319 Comments
March 26, 2023
Elizabeth Iskander M.D. says:
At 70y/o got 1 cm lobular ca. Mom died of same ca after 5 years in 1975. I joined FROST (Freezing without Resection of Small Tumers) study. My Cancer was frozen in office procedure & went home. Easy. No node biopsy, chemo, radiation. I’m in Glendale CA. There are FROST trials in many USA states. Tried Arimidex but joint pain and mental fog. Started Tamoxifen 20mg. Uterus became painful & endometrial lining kept growing to 16mm. Had D & C. No cancer. Later I cut it to 10mg, then 5 and now 2.5 mg. Feeling better.
Read about freezing breast cancer. Having that dead tissue remain in your breast acts like an immunization. In animal studies it occasionally reversed advanced cancers.
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April 27, 2023
Maddie says:
Hi All:
I am so happy I found this site as I am really concerned about starting this tamoxifen. I literally have the prescription to pick up and I just don’t think I can do it! I was diagnosed in Nov/22 and had DCIS ER/PR +. I’m 61 and post menopausal ( surgical) It was a large area and somewhat spread out. Had a lumpectomy with oncoplasty reduction surgery. Margins were clear and 5+. I had 20 sessions of radiation as a test I had done showed I had a high possible rate of recurrence. That was the DecisonRT test. Lastly is tamoxifen and I just gave this gnawing feeling not to take it, but my breast surgeon said, I would just hate for you to have a recurrence somewhere down the road and say to yourself, I wish I would’ve tried the tamoxifen. And now I can’t get that out of my head. But I have a gut feeling that just says DON’T DO IT!!
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July 19, 2023
Ashli Presley says:
Hi! I want to share my experience with Tamoxifen. First I must say that my mother was on Tamoxifen for 10 years and she never had a reoccurrence of her breast cancer. I wasn’t concerned about starting Tamoxifen b/c I witnessed how well my mother did on it. I was thrown for a loop when I experienced loss of energy and severe depression with a side of anxiety. It’s unclear if this was really due to the Tamoxifen or if I was having a late reaction to the stress of a cancer diagnosis and a double mastectomy. I was advised to stop the tamoxifen while I loaded on an antidepressant and also started taking a very low dose anxiety medication daily. After about 6 weeks I started Tamoxifen back and it has been going pretty good for 3.5 years. The hot flashes are annoying but have gotten much less frequent and I assume that is something I would have to go through as a woman anyway. I’m so grateful I had doctors that listened to me and took action! I get a lot of comfort knowing that I’m doing something everyday to prevent cancer from returning.
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June 15, 2024
HD says:
Do you know which brand of tamoxifen your mum took ?
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August 15, 2024
Naheed says:
Hi can you share please which brand of tamoxifen your mother took
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April 10, 2024
Marica says:
I’m glad you’re doing well. I was caught completely off guard with the depression since starting on tamoxifen. And the anti-depressant I was taking is contraindicated, so I had to drop that. Have started on something new today.
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April 29, 2024
Linda fitzpatrick says:
I started tamoxifen 20mg 4 weeks ago after a right breast mastectomy, I did not need Chemo or radiation treatment as my risk of it returning are low, today I was told by my oncology nurse to stop taking it as I an still having some side effects that they say should have passed by now, headaches, stomach cramps, nausea and loss of appetite, not sure where I will go from here but will just have to wait until I hear from my oncologist on Wednesday, feeling very deflated at this stage of my recovery.
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May 9, 2024
Yogisha Bhimjiani says:
Hey .. Get well soon ...I just had a mastectomy on 23 April 2024 and my doctor has prescribed tamoxifen ... I will have to take it ..the tumor I had was about half a centimeter in size ... I don't have a choice but to take it ... are the side effects that bad ?
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May 27, 2024
Mary Kate says:
I'm 49 and have lobular cancer, stage 1 grade 1, opted for a double mastectomy and was put on 20mg of Tamoxifen. Been taking it daily for 8 months now. My side effects are insomnia (I wake up throughout the night several times), pretty bad hot flashes, severe fatigue, and my emotions are all over the place. (I tend to cry easier than before). BUT...Tamoxifen throws you into menopause and all these symptoms are ALSO menopause symptoms. So is it really the pills or menopause? NOT taking this raises the cancer recurrence by 60%, and I've also known people personally who took themselves off it and the cancer returned. So I'm going to try to just manage these symptoms. I'd have to go through this anyway as I age, so I might as well get it over with.
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June 24, 2024
Tamatha Sain Lowman says:
It is a stage called medicated menopause. I took Tamoxifen for 18 months when my numbers read I was in that state. I was then switched to Anastrozole. I took that medication for 3 months and my body rejected that medication and my menstrual cycle began. It had thrown me out of the medication menopause state I was in previously. My estrogen level was at a normal range and sex was amazing again. I knew I couldn't have the estrogen and something had to be done. I was put back on Tamoxifen but my body wouldn't go back into medicated menopause and my estrogen levels were not coming down. I had to have a total and complete hysterectomy that December (18 months ago). I was put back on Anastrozole and now 18 months after taking Anastrozole I am suffering from stiff, swollen and painful joints. ( hands, elbow and heal of my right foot). I have been taken off for 30 days. Oncologist said may have to go back on Tamoxifen. I don't want to the hot flashes were horrible, vaginal dryness, and no sex drive. I have just now got my groove back after the hysterectomy. I think I am going to ask if I have to take it for a low dose. I did have a double mastectomy in November 2020, after early detection of bilateral breast cancer stage 0 in left (lobular) and stage 1 in right (ductal). No treatments or radiation were required because I chose the mastectomy over lumpectomies. I hope this some.
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August 2, 2024
marcia piccione says:
It's doubtful you will get hot flashes from tamoxifen after having a hysterectomy. I was pushed into menopause from chemo and so far have had 0 hot flashes from tamoxifen. I had more from taking DIM and indole-carbinol-3 supplements.
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September 18, 2024
Sasha says:
Aside from having fry skin and sun making me itchy and sensitive. Yes the joint pain is pretty bad. But I know it going to be ok in the long run. I just walk slower and have learned to live with it. If I stay sitting for long periods it's real bad. The stiffness is awful. But once I start moving it goes away!
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April 26, 2024
Charlotte Faulkenberry says:
Thank you so much for posting your experience with tamiciphen. I just started taking it and it has hit me hard. I slept half of the afternoon and I am still so tired that I don’t know how I am going to manage dinner for my husband who is an invalid and how to eat something healthy for me. I am new at this so I hope I can be more positive and figure out a way to keep my little household going. Your message gave me hope that even with issues there are women out there that are making it through a very difficult time.
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October 24, 2023
Sherri Kosches says:
Your site is fascinating. I wish I’d of found it sooner.I had a VERY small tumor removed from left breast 4mo ago; 5 days of radiation 2mo later, and 8 wks after, I began 20mg of Tamoxifen. The surgical scar was healing beautifully and the radiation left no trace. 6 days after beginning Tamoxifen not only the surgical area, but half my breast blew up with a horrible rash.. by the second day it had begun to crust and peel. According to my internet research it an “extremely rare” side effect known as “Radiation Recall” brought on by Tamoxifen. I wonder how rare it is or just ignored by dr’s. I would be interested to know if anyone else has experienced this.
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March 23, 2024
Annah says:
Hi Jodie,
I didn’t have to go through radiation after my surgery, though I had a localised rash on my surgery area. My oncologist and oncologist thought that was very “rare.”
I thought it was quite “dismissive.”
I was told to stop tamoxifen for a week from memory and resume taking it again.
I had other side effects, joint pain, lower back pain, cataract on both eyes etc…
Only took tamoxifen for 8 month but I really think, damage to other parts of my body have been done.
All the best in your healing
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November 15, 2023
Joy Bird says:
Has your skin healed yet?
After a lumpectomy I have had a small non-healing wound on my incision site for about 7 months and all the providers that I have seen so far are scratching their heads and don't seem to know why it won't heal. It looked like a small pimple before radiation and while I pointed it out to the surgeon and the radiation oncologist before radiation, I was encouraged/pressured to proceed. After radiation it really blew up. It tries to scab, then opens up every 5 or so days. I started taking tamoxifen 20 mg about 4 weeks after radiation and I'm wondering if there is any connection to the impaired wound healing or if it's simply the radiated breast tissue that is the main complication. Has anyone heard of this happening? I can find no information or resources on what I'm experiencing.
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February 28, 2024
Carole says:
I've had a lumpectomy but after not having clear margins had to have a mastectomy. After the surgery the would was slow to heal but seemed to be doing ok. After a few months a small pimple appeared which looked like a hair follicle that was inflamed. It started to weep and scabbed over and same as you periodically every 3-5 days the scabs cones off and it weeps clear looks like lymph fluid. They havn't so far been able to clear up why. I stopped taking aromatase inhibitors and that's made no difference - you are the first person I've come across with the same symptoms of not healing as me...
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April 27, 2024
Ruth Chasse says:
Could it be an oil cyst? I got a couple of those after my surgery. They didn’t surface but soon went away before the next ultrasound.
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May 15, 2024
Joy Bird says:
Here’s my follow-up post! Almost a year to the day my wound is healed.
Unfortunately my original surgeon wouldn’t see me back because she no longer accepted my insurance. This is where everything fell apart because she was the original architect and was the best person to treat the complications I was having. But instead I saw provider after provider who were looking for a dissolvable stitch when in fact it was a permanent suture that was infected!! I finally figured it out when at my wit's end, I obtained my op notes and discovered that there was a permanent suture in there!! This was right before the wound care doc was going to put me in the hyperbaric chamber. I requested to be referred to a plastic surgeon and he diagnosed it as an infected permanent suture and removed it. Healed up within 2 weeks. I can’t tell you how traumatizing this past year has been. I am beyond disappointed with the medical care I have received but super grateful to have a healed boob, finally. Mine is a cautionary tale.
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December 31, 2023
LCK says:
Maybe a suture granuloma!! Please have your surgeon look very closely at this- easily treated by removing suture poking up.
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March 19, 2024
Linda Stoneham says:
I had this same thing happen in two places. No healing until the suture knots came out.
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April 27, 2024
Elizabeth says:
i was just going to say this! It can be a piece of the stitch! Also apparently after Covid, they quit making certain types of dissolvable stitches completely. An orthopedic surgeon told me he had to change the way he closes his surgeries b/c of that.
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March 25, 2024
Robin Kahus says:
I had the same experience. Mine turned out to be necrosis. I spent a month in a hyperbaric chamber.
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April 27, 2024
Ruth Chasse says:
You should be aware that Melanoma can look like a pimple. If you have a sore that won’t heal, oozes or crusts see a dermatologist.
Melanoma can get very bad quickly, my nephew had Melanoma start like a pimple on his ear. It was already stage 3B when he got it removed. They had to remove a portion of his ear.
I recommend you see a dermatologist right away.
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April 27, 2024
Ruth Chasse says:
You might also inquire with the doctor if it could be an oil cyst. I had an oil cyst after surgery. It did not surface and was gone before the next ultrasound.
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July 13, 2024
Michela says:
MRSA?
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December 26, 2023
Chris says:
I had a severe all over body rash from Tamoxifen
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May 26, 2024
Mila Reyes says:
Hi! I have been on tamoxifen for two and a half years. I had a severe reaction to tamoxifen last year and I ended up in the emergency room. My body completely shot down, I could not go to the bathroom and pee, and I had a rash in my face and a very swollen face. The doctors took me off the medication for two weeks and started me on aromatase, but my body rejected the meds too. They put me back on tamoxifen and after a year I started to have a severe rash on my face again. My eyes are swollen, as well as my whole face. My eyes are hurting and I have a thick rash around my mouth and red cheeks. My face hurts. I am still trying to find a response from the doctors about what you do. It's been 4 days seems I stopped taking the pills and I am already feeling better the rash is disappearing. I hope I get help fast. I am starting the meds again as I am worried about recurrence. I am scared to start again the treatment.
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May 26, 2024
Mila Reyes says:
Hi! I have been on tamoxifen for two and a half years. I had a severe reaction to tamoxifen last year and I ended up in the emergency room. My body completely shot down, I could not go to the bathroom and pee, and I had a rash in my face and a very swollen face. The doctors took me off the medication for two weeks and started me on aromatase, but my body rejected the meds too. They put me back on tamoxifen and after a year I started to have a severe rash on my face again. My eyes are swollen, as well as my whole face. My eyes are hurting and I have a thick rash around my mouth and red cheeks. My face hurts. I am still trying to find a response from the doctors about what you do. It's been 4 days seems I stopped taking the pills and I am already feeling better the rash is disappearing. I hope I get help fast. I am starting the meds again as I am worried about recurrence. I am scared to start again the treatment.
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April 2, 2024
Denise says:
Yes, I experienced the radiation recall. Radiologist suggested pulling off Tamoxifen for the weeks of radiation and two weeks before. 4 weeks/20 appointments. So off of the Tamoxifen for about 8 weeks (an additional 2 because of the burn). Tamoxifen she said causes worse side effects with radiation treatment. I was okay until the last week which was a boost. Skin painful and red. Two weeks after finishing radiation blisters and burning. The Tamoxifen for months after radiation still makes my skin red exactly in the same spot at the radiation therapy. I am 4 months out. At first it hurt for two months now it’s just red. I’m curious to see how long it continues.
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August 29, 2024
Christine Sable says:
Hi ! Same as you I am going through radiation recall from tamoxifen I believe . I ended 3 weeks ago from 5 treatments of radiation and started tamoxifen 20mg 2 weeks ago . At first I thought it was my pores being clogged from the Aquaphor or Mederma I was applying multiple times a day . Then I thought it was later onset radiation side effects . I now believe it is tamoxifen induced . The only cream that has given me some relief is the Benadryl anti itch cream relief . I got the generic equate brand at Walmart but only thing that has brought down the irritation 50%. If it doesn’t go away or isn’t manageable I will definitely talk to my oncologist about this at my appt in 3 weeks . It cannot be that uncommon if 2 of us are experiencing it . I know I have very sensitive skin but still … no fun .
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October 29, 2023
Amanda says:
I am in a similar situation and have decided not to take the medication
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February 28, 2024
George says:
Hi I've been talking tamoxifen for nearly 10 years I'm done it's making my life hell I do understand why people come off it ..I had it in my mind I should be grateful and its keeping me alive it's affected my mental health and lost my job ..should I stick it out don't know what to do
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March 15, 2024
Dawn says:
Omg I am so pleased I have just stumbled across all of you, I had grade 2 DCIS last February had lumpectomy and 5 days of radiotherapy and tamoxifen I have to have for ten years, so I am just one year down the line on it and it’s a rollercoaster I can have couple weeks of feeling like I did before the cancer load energy etc then bang feel ill nausea dreadful fatigue anxiety cannot sleep I am 50 but since being on tamoxifen I’ve aged loads , does anyone feel spaced out or just weird on tamoxifen at times at all . All I do is worry is this side effects or is it something else . You are all warriors out there and it’s reassuring to see others having similar side effects
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July 31, 2024
Christina Bruder says:
Yep it's T .
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April 26, 2024
Charlotte Faulkenberry says:
I have only taken tamoxifen a few days. It is already having some very bad effects. I have had been sipping coffee all day long just so I can stay awake. I think if we try to move around and do small things we might be better off. All I have to do is sit down and I go to sleep, my husband is an invalid so he has a difficult time helping me. I am trying very hard to be positive to beat this stuff —- so many people have fought and won so I keep thinking about that. I hope we all can find a way to beat this. One thing that is already helping me is to have you guys that share your challenges and your victories!!! You are the best—— I know I am no longer fighting this alone!!!!!
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April 28, 2024
Samantha Collins says:
Hi yes i do only been 4 weeks and i have changed,im angry i snap at everyone, i feel spaced out not in control of myself, ive aged gained weight feel so drepressed
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October 25, 2024
Dede A Henderson says:
I started Tamoxifen in November. I had hot flashes, loss of energy, and was so stiff I could barely get dressed in the morning. I just saw a rheumatologist because my oncologist thought it was an autoimmune disease. The rheumatologist did testing but was pretty sure it was the Tamoxifen. I went off it for a month to confirm and felt so much better. I restarted it again this last week and am back to all my previous symptoms. It's very frustrating.
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October 27, 2024
Anya Longwell says:
Hi, sorry you’re feeling bad. Same here, I had lobular 1.2 cc stage 1 and came back as low in percentage for recurrence. Margins were clear, lymph was clear. I chose to take tamoxifen over aromatase inhibitors because I have familial high cholesterol… (ai’s cause it to go up) anyway, 7-8 months in, all of a sudden I felt like I had been hit by a truck. Sore muscles, achy joints, severe nausea, fatigue, dizziness, memory issues. Omg! Couldn’t function. I stopped it after suffering for 3 weeks straight,(thinking it was the flu, but had no fever) It’s been 7 days since I’ve stopped. Feeling better each day. But still icky. I’m afraid to try a new drug. Also, I had similar symptoms twice when they tried me on statins for cholesterol.
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August 14, 2024
Carrie y says:
I ve had the same side effects after taking for 8 months. I have decided to stop taking it. It aged me so fast and unable to do the things I once loved, so I guess i am taking the risk. I am 48
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April 2, 2024
Lynne says:
Hi
I’ve been taking tamoxifen for 5 years now. Had double mastectomy, chemo. Had asked my oncologist if I could stop as they originally said 5 years. Now I find out there is a test called Breast Cancer Index where they test the original cancer (I guess it’s frozen and saved somewhere) to see if further hormone therapy is needed. If I hadn’t stirred the pot, this wouldn’t be taking place. That gets me mad. Just shows you have to be your own advocate! I stopped taking it and I feel lowsy. I’m hoping these are detox side effects. I’ve been taking a lot of supplements. One in particular is apricot seeds. Contains laetrile, Which is vitamin B17. Am reading a great book called World Without Cancer. You should check it out.
I hope my BCI test comes out so I could remain off the pill. There’s a lot of info out there to research about cancer the doctors don’t want you to know about. You must do your own research. I drink soursop tea too. Has anti cancer properties. Get the book. You’ll be very surprised what and how info is kept from us!!!!!
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April 12, 2024
Adele C says:
I’ve been on Tamoxifen for 10 years, in the early years the side effects were brutal, but I’ve learnt to cope, I still get hot flushes. Wondering what life will be like when I come off them.
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April 13, 2024
Amie says:
Hi
My 10yrs of Tamoxifen is up in September this year, however following an oncology review yesterday I have decided to stop it.
The hot flushes, thinning hair & joint pain had become so much part of my life that I think I just got used to them.
Looking forwards I’m hoping for a reduction in these awful side effects & hopefully they’ll all go eventually
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August 21, 2024
C Wilson says:
I am so sick and tired of being sick and tired. I have anxiety and I was blaming the Covid vacs. I had two and will not have any more but the worse part is the muscle and joint pain. My hair thinned and my skin changed. Bumpy and rougher. I have been on Tamoxifin for almost 3 years. I want to get off it so,hopefully, I can be my old happy self again. Seize the day has been missing and I want that feeling back. I appreciate all of your stories.
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August 8, 2024
Jill Cartella says:
My doctor is taking me off of it I have had joint pain for 15 years and my doctor did not tell me this is a huge side affect plus this has also affected me mentally so bad that I don't feel happiness only sorrow. Now Since FDA has stepped in my doctor want to take me off my meds .Right now that's not the solution.
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July 1, 2023
Peggy says:
Just stopped taking Tamoxifen after 4 1/2 years of the 3 drugs available. First two caused joint pain, Tamoxifen had many side effects. I was tested to see if 5 more years of it would affect my chances of recurrence, and that came back negative. Therefore, I stopped taking it about a month ago. The hot flashes are still really bad, but might take a while to disappear. However, I would recommend you try it for a month or so. You may be one of the people without side effects!
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December 31, 2023
FP says:
Did you experience any other side effects - positive or negative - after stopping tamoxifen?
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January 28, 2024
Susan says:
Hi, Peggy! How was your test to see if it was worth it taking tamox for 5 years more??
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February 5, 2024
Mignone says:
I am so glad that I happened upon this thread! I was diagnosed in Feb. 2020 at the age of 57. I had not just a tumor but a cluster of pinpoint tumors: dcis, hormone positive, and triple negative. I had 8 rounds of chemo, double mastectomy, 19 rounds of radiation and reconstruction. Overall, I have said that if you can have a blessed cancer journey then I had one. I tolerated everything really well,all things considered. I have been on tamoxifen for 3 and a half years. I have had some side effects such as leg cramps, hip pain, and fatigue. I was always very active and now all I want to do is come home from work and take a nap. I have not really changed my eating habits and continue to try and eat in a healthy manner but I feel like if I look at food I’m going to gain 2 or 3 pounds. I am up about 17 pounds and I hate the way I look. I never had a belly before and I feel that my face and skin have also aged a lot in the past 4 years. After reading the comments made here I believe I’m going to try reducing from 20 to 10 and see if that has any effect. Thanks for sharing your journeys. Stay strong my sisters!
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February 8, 2024
Georgia Woolery says:
I was diagnosed with stage 1 Lobular estrogen pos breast cancer. Lumpectomy, 6wks of radiation.. I was post menopausal and placed on Anastrole. Horrible hip/joint pain, increased hot flashes. Changed to another med. been taking 2 yrs. Side effects have all improved. But now dealing with horrible weight gain! About 15 lbs
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February 21, 2024
Denise says:
Have you changed your eating habits since you been on the blocker or does it just happen? I am dreading taking it! Let me know. Thanks
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May 5, 2024
Bonnie says:
For me, Tamoxifen increases my appetite. I want to munch continually. I have been on it for about 8 months and gained 15 lbs.
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May 11, 2024
Jolie says:
Did you lower the dose of Tamoxifen. I am thinking of taking it every other day because of side effects but my oncologist is not in agreement with that. She says it’s not protocol. My cancer is invasive ductal carcinoma stage 1. I tried all three of the Aromatase Inhibitors and they were all horrible. Hard choices. How are you doing?
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August 4, 2024
Margo says:
I have been on Tamoxifen for 2 years. I tried Anastrasole and Examestane first and could not concentrate. I felt horrible. I was started on Effexor to help with the hot flashes. Lately my anxiety has been so high nausea, headache. Absolutely no sex drive. Don’t know what to do.
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December 21, 2023
Aisha Tayub says:
What was the test you took to see if you should take tamoxifen in case there is a recurrence?
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March 18, 2024
Lindsay Ballard says:
The test to determine the benefit of taking Tamoxifen past the 5 year mark is Breast Cancer Index- there may be others but this was the company/test for mine
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February 6, 2024
Murphy says:
Hi…I had estrogen positive breast cancer in 2006. Had lumpectomy, radiation and then heavy chemo..followed by 10 years of a mix of femara, arimedex and tamoxifen . I finally stopped when I started to bleed. All three had varying side effects. I got breast cancer in the other breast 16 years later. Stage 1a. The tumor was the size of a grain of rice…only radiation this time. I was put on arimedex, the joint pain was truly painful…taken off and put on tamoxifen…now I have vertigo and nausea and leg cramps!! It’s a tough call…and the cancer returned any way! Not sure what to do…not a gun way to exist!
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May 4, 2024
A S says:
it’s called breast cancer index test, I read above but did’t have it done yet
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November 24, 2023
Maddie says:
Hello: I did take tamoxifen for just a little over 5 months. Two weeks ago my oncology’s said to stop due to the way I was feeling. After two weeks I have terrible joint and bone pain, fatigue and awful insomnia. Did you experience any symptoms after you stopped? Hoping this goes away soon! Thank you
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March 23, 2024
Annah says:
Hello, I was diagnosed with breast cancer in April 2020 and had surgery in May 2020, I was 47 yrs old then. I started taking Tamoxifen shortly after surgery but had to stop immediately as I had a reaction to it. I had localised rash in my right chest where I had nipple sparing mastectomy. My oncologist and oncologist nurse said that’s the first time they’ve ever encountered a reaction like mine. On top of this, hot flushes also started and joint pain and stiffness. In my hands/fingers, elbow, knees and lower back. I cannot bend and pick up things comfortably on the floor. I felt like I was a very frail elderly lady. My eyesight was also affected and had cataract surgery for both eyes in 2023. From my eye check up in 2020, prior to surgery, there are no signs of cataract in my eyes. I’ve consulted with another neurosurgeon for chronic lower back pain which became evident post surgery. I also sustained right shoulder bursitis after surgery and still going through physiotherapy.
From memory, I resumed taking tamoxifen in August 2020. I only took tamoxifen for about 8 months as it was seriously affecting my quality of life. I didn’t want to go on like how I was feeling so oncologist decided to stop the drug as they said I had a low risk for breast cancer recurrence. I was meant to take tamoxifen for 5 years at 20mg per day.
I hope there’s more studies presented out there about side effects of tamoxifen so that future patients can have a more informed decision before taking the drug.
i was open to taking a lesser dose of tamoxifen at 10mg but oncologist said there’s no known benefit/evidence that supports it.
I asked if my lifespan would be affected by not taking the drug, there’s no reply to that question. I’m now nearly 52 years old this year.
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April 27, 2024
Elizabeth says:
I’m surprised your doc didn’t mention that they DO have studies with lower doses of tamoxifen! https://www.nature.com/articles/s41416-023-02293-z
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February 7, 2024
Becky says:
I had double mastectomy in July 2022, no chemo or radiation but was put on Anastrozole and then another hormone inhibitor stated with EX. (Can’t remember) they both caused bones to hurt, blurred vision, confusion, hip was weak, ankles and Achilles tendon hurt to where I was unable to wear most shoes. I decided to take myself off about 3 months ago and my body is feeling much better. I am suppose to take it for 5 years but do not believe I can. I’m 56 but felt 80. I do have an occasional hot flash daily but I can deal with that. It’s such a tough call but do what makes you happy!! Best of luck!
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June 23, 2024
Susane says:
Hi there, I am 65, lob carcinoma in L breast, atypical hyperplasia in R. Had a double mastectomy just 3 1/2 weeks ago. Tumor was 5 cm. Onco type was 22. No chemo or radiation and like everyone here oncologist wants to put me on a hormone blocker. I tried to find research that shows how women who are already post menopausal with a very low recurrence rate did without the treatment compared to those who take it. I am 65! Do I want my remaining years to be miserable? Does anyone know of any studies? TY
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April 9, 2024
Marcele says:
I started taking tamoxifen in August 2022. I feel like I have aged 20 years. I’m 65 and my body aches to the point it is difficult to move. I was active prior to cancer and now I have to force myself to do anything. I hate it.
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January 5, 2024
Sharon says:
I'm 75 and had a double mastectomy just over 1 year ago. Doctor put me on Letrazole which caused extreme dry flaking skin on my face, arms and legs. I also had overall joint pain which was debilitating as well as constant fatigue and hair loss. I complained to my doctor for 6 months and was basically ignored until I told him I'd rather choke than deal with this the next 4 years! I'm now on Tomoxifen (2 month), slight joint pain, some fatigue. Still am not feeling good and thinking about going off Rx either completely or taking every other day! Just don't think I can do 4 more years! Please help, welcome all comments!
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April 24, 2024
Christine says:
Hi, I was diagosed with invasive ductal carcinoma January 9, 2020 and had a lumpectomy (stage 1) on the left breast March 3, 2020. During the COVID shutdown I had 5 rounds of full dose radiation followed by an Rx for letrazole a few months later. Within 30 days of taking letrazole, I was a bumbling idiot! I couldn't perform the simplest tasks without forgetting what I was doing. I was constantly tired and slept for long days day and night. After 3 months, I went off the letrazole. Once I tapored off of it, I started on exmestane (not sure of the spelling). Althought I felt somewhat better, I still had great difficulty functioning at work. I was a high school math teacher who had nearly a photographic memory before cancer. At that point, my retired husband went to work with me each day so that he could help me function. I could remember the math, but all of the novel things I was doing in the classroom, including the technology issues were overwhelming. After a total year of letrazole and exmestane, I told my oncologist, no more meds! I'd rather die than live half a life. It has taken time, but I'm doing much better. I have worked to have a better diet, get plenty of rest, and have done alternative treatments with counterstraining, and have a new job. Life hasn't been this good for some time. Blessings to you all.
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June 23, 2024
Susane says:
Hi there, thank you for sharing your story. Taking this crappy meds scare me to death. I am leaning towards not taking them at all. I want to enjoy my life moving ahead. May I ask what alternative therapies you are doing?
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February 17, 2024
Lynda says:
I had exactly the same effect from Letrozone, only stayed on it a month, certainly wasn't putting up with that for 5 years. Stayed off meds over Xmas period as had family visiting, needed to feel as good as possible.
Now prescribed Tamoxifen 20mgs, was ok then started having problems with one of my eyes, tried over the counter drops, then thought could it be the tamoxifen, what a shock to read it can effect your eye sight.
I'm now at a loss what to do, my quality of life is important, would a lower dosage of Tamoxifen be better??
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August 2, 2024
marcia piccione says:
You can only do what you can do. It's your choice. Your life. The doctors are just going by statistics and guidelines which is the best we have for cancer. No one has any absolute guarantee these drugs are the answer to you as an individual, just that they provide a better statistical outcome. I just started tamoxifen and so far I just feel weirdly tired. If it becomes debliitating and I don't get used to it, I'm done because it's not worth it to me if I just want to sleep all the time. I exercise every day, eat great, so I'm not sure what else I can do to ease fatigue, if anything.
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May 4, 2024
A S says:
hi Sharon, everyone is different but I would ask about the percentage of risk / benefit if you do and then if you don’t take the tamoxifen… in my case it was 10% risk of recurrence and down to 6% if I take tamoxifen… so I am debating… I want to ask about the breast index test to see if tamoxifen would benefit me, you could do the same? just like my oncotype test for chemo came back very low so my oncologist didn’t recommend it… I am also seeing an integrative health Dr who is fantastic so if you have that ability you can seek out ways of lifestyle, diet and exercise change which can give you back your life… for example exercise and muscle building is detrimental for women and it’s never too late to start, but muscle building reduces chances of cancer to survive in the body’s healthy environment on a micro cellular level… maybe my wording is not perfect in trying to explain it all in short but essentially this is what I am finding in all my reading… check out the book “outlive” by Dr Attia who was conventionally educated & also integrative clinics who work with the conventional oncology treatments… so there would be NO side effects, from things like “european mistletoe” use along whatever onco treatment you decide to go with, or none… it’s just an extra measure to help alleviate any side effects and also possibly reduce recurrence. Mistletoe therapy has already been approved in Europe and is used in conventional oncology as part of the treatment alongside chemo, radiation, hormone or tamoxifen type therapy… self advocate! research and ask questions, change your Dr if he or she is not addressing your questions. It’s your life. Good luck
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June 9, 2024
Susan B says:
I tried all of the aromatase inhibitors and could not tolerate any of them. Also tried tamoxifen, but then got depression and anxiety. Fast forward to getting good antidepressants and tried tamoxifen again with a lower dose. I made it about 5 months and had major depression, anxiety, and fatigue.
Finally stopped and then came the tamoxifen withdrawals. I never expected the joint pain, fatigue, muscle weakness, nausea, and blood sugar ping pong. Hoping it goes away soon, but if the online forums are right, it's going to be an ugly 2-3 more months. Ugh!
And my oncologist refused to acknowledge withdrawals or try to help. I start with a new oncologist next month.
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April 17, 2024
CJ says:
Hi can I ask how you were tested to see if you could come
Off of tamoxifen and what your score was? Thank you
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October 16, 2023
Gail says:
What is the test called you took to find out if continuing to take Tamoxifen would help prevent recurrence? I had a left lumpectomy in 2019 and this year had a right mastectomy. HR+, HER2-. Doctors said I must take Anastrazole; after 5 wks my eyesight was very blurry, ophthalmologist was startled at exam, and oncologist said stop for 2 wks then take Tamoxifen 20mg. I understand Tamoxifen also can damage vision. It may be permanent.
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July 16, 2024
Suzy says:
Hi, I’ve been taking tamoxifen for 7 1/2 years , I’ve suffered terrible with hot sweats. They do get slightly bearable at times, but terrible at the moment. Wanted to come off them as impacting my life . What test did you have to find out if your b/c was negative in reoccurrence. I would be interesting in having done if available.
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October 26, 2024
Paula Cronan says:
I would like to know the name of the test that you take to find out if it reduces your chances of recurrence. I have had DCIS twice and lobal carcinoma once (2000). They occurred years apart, 2000, 2015, 2023. I have taken follow up hormones (femara, tamoxifen) for a total of 11 years. This time it is making my life uncomfortable...swelling of benign cysts, joints, and I am afraid of uterine lining cancer since I have a family history and know tamoxifen has this side effect sometimes. So...what is the name of the test? Thanks to all of you.
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October 9, 2023
Rachelle Atkins says:
My oncologist said the same thing. I took it for a week, then quit, then restarted and quit again. I just don’t want the risks or the side effects.
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October 15, 2023
Maddie says:
Hi all! So I’m back. My last post was in April/2023 and I did in fact take the tamoxifen and am still on it. However, I’m on a lower dose of 5 mg. I found there have been studies done showing 5 mg is sufficient for DCIS ER/PR+ and for 3 years instead of 5. It’s call the Baby Tam trial and it was done in Italy over 10 years. I discussed with my oncologist and she knew of it and agreed to let me try it at 5 mg. I do have terrible headaches recently and I get the hot flushes and sometimes cramps in my legs. But the more and more I did my research and talked to others I feel if we can stick it out we might be better for it ..at least in the way of reoccurrence. Who knows..at the end of the day we have to do what’s right for ourselves and that may be different for all of us. Wishing all of you the best!! :)
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November 23, 2023
Mina says:
This has been an incouraging post, thank you for sharing. Im 66 yo and on tamoxifen for the past 7 months (20mg) for ER+ bc (very reluctantly). Ive also had a full hysterectomy in 2020 which included the removal of my ovaries, but continue with gaenycological check ups on a yearly basis. My biggest concern is the potential blood clotting with Tamoxifen, however my oncologist advises that the % is very smal, but still a concern. I will discuss decreasing the dosage with her on my next visit. God Bless
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July 7, 2024
Kate says:
I was diagnosed with estrogen plus breast cancer and had a double mastectomy. I'm brca2 positive so they recommend ovary removal. I'm 41. The tamoxifen 20 mg caused severe depression. I reduced to 10 mg and will try to work my way up. I'm wondering if the effects I felt from tamoxifen (depression and lose of personality) is what ovary removal will feel like. Do you still experience side effects from the ovary removal?
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April 22, 2024
Nenette Hoffman says:
So glad I stumbled upon this site. I had an estrogen positive breast cancer. Had lumpectomy and radiation. Was put on Anastrozole but had to stop due to debilitating side effects. Exemestane was no different, plus I gained so much weight. With these 2 meds, I felt like a sick old lady (I am only 66). I will be on letrozole this week but as I read about it- the side effects are the same with the first 2 meds I took. I will try letrozole and see what happens.
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November 7, 2023
Soraya says:
Thank you for the information.
My doctor gave me a 20 mg dosage and I'm hesitant to take it and I need to know why such a high dosage if my tumor was 5 millimeters in diameter, negative lymphonodes and 21 sessions of radiation.. BRCA test negative.
I will search for an answer this week and then publish it.
Thabj you again.
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February 5, 2024
Angela Prytyka says:
Hi are you still taking Tamoxifen 20 mg? Did you do the research ?
Thanks
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February 17, 2024
Lynda says:
I had exactly the same effect from Letrozone, only stayed on it a month, certainly wasn't putting up with that for 5 years. Stayed off meds over Xmas period as had family visiting, needed to feel as good as possible.
Now prescribed Tamoxifen 20mgs, was ok then started having problems with one of my eyes, tried over the counter drops, then thought could it be the tamoxifen, what a shock to read it can effect your eye sight.
I'm now at a loss what to do, my quality of life is important, would a lower dosage of Tamoxifen be better??
Reply
March 23, 2024
Annah says:
Hi Linda,
I’m sorry to hear that you too experienced side effects affecting your eyes. I noticed the change in my eyesight just a few months after taking tamoxifen. I was diagnosed breast cancer in April 2020 (47 years old). May 2020 I had surgery. A few months after taking tamoxifen I developed cataract in my right eye. I didn’t have this prior year. I only took tamoxifen for about 8 months and stopped as it was affecting my joints and overall quality of life.
Drs advised bi annual check up from 2020-2021. In 2023, I ended up having cataract surgery on both eyes.
I asked for a lesser dose of tamoxifen then but told by oncologist there are no studies to support this. Reading earlier comments, apparently there was a trial 10
Years ago in Italy and that 5mg seemed to be sufficient.
I’m glad to have found this thread/forum as I feel now I am not alone.
Hopefully the medical field can do more studies on this and ACTUALLY LISTEN to the concerns of women taking tamoxifen.
All the best
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November 10, 2023
Ali says:
Mine situation is similar w/ the exception I am 66 yrs old. Lesion was only 4 mm, only 2.2 mm at time of lumpectomy b/c they had scooped so much of it out at the time of biopsy. Lymph node negative, 15 rounds of whole breast radiation. Started on T (20 mg) Oct 1, and had such bad vertigo and nausea, I contacted my MO on day 13. Was advised to go off until Nov 1st, and then start back on 5 mg of T for 2 weeks, then move up to 10 mg for 2 weeks…then to 20 mg. I can tolerate the 5 mg mostly, but I still have had some bad days since restarting. Don’t think I’ll move up to the 10 until I feel comfortable on the 5 mg. Sometimes we have to consider quality of life - don’t know what any of you were told, but I was given the following percentages of recurrence:
2% w/ whole breast radiation & taking tamoxifen
4-5% w/ whole breast radiation & no pill.
If I can take T at a lesser dosage, I feel like I’m doing something.
Was told I should be on T for 10 years since the chemical breakdown of the lesion was 100% estrogen, 5% progesterone invasive ductal carcinoma, type 1A.
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November 11, 2023
Rachel S says:
Hi. I had a mastectomy in 2020, not clear margins, as too close to the skin and microscopic traces in the sentinel node. I had radiotherapy following on from chemotherapy which put me into a chemical menopause (I was 49). I started Tamoxifen after my radiation therapy had finished in 2021 and I have to say I have had no problem with it at all. I don’t post this to boast ! There is so much negative material about it out there. For my part, I take great comfort in taking something every day which reduces the chance of a recurrence. My hormone levels are now so low that I am about to transfer onto letrozole, which I am terrified about, but will do nonetheless. I take loads of supplements and have had great success with B vitamins. Starflower, oil, magnesium and one my oncologist recommends which is sage. Sage is one of the few menopause vitamins that those with hormone respondent breast cancer can take.
Hope this helps! Oh and walking helps me enormously too.
Good luck everyone. Rachel x
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December 15, 2023
Celia Graham says:
I just started 2 weeks ago and feel tired and sore, and sometimes winded. I really want this to work for me. Really sad and discouraged.
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July 3, 2024
Ruth says:
Did anyone reply to your question?
Do you have anything else to add?
Thank you
Yours is my “question of the day”
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January 22, 2024
Joanne says:
I am 61 had stage 1 mass removed last week. I had a hysterectomy cancer in 2013. I do not want to take Tamoxifen. Or any medication! Am l wrong to be so concerned about the side effects?
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May 3, 2024
Christine says:
Hello all, so good to hear all your experiences. I too had a lipectomy of 3 lumps, at stage 2, estrogen positive cancer on right breast, followed by 3-4 weeks of radiation therapy, as a precaution had Sentgle node plus four lymph nodes removed at surgery too, all clear then 3 weeks later started Letrozole. What a nightmare, insomnia, blurred vision, dizziness, vague, nausea, diarrhea , sore gums and teeth, Tinitus ringing in ear increased, absent minded, poor balance and the worst joint pain ever, that I did not have prior to surgery, I was hobbling to the toilet at night like an old women, hot flushes all night, exhausted, fat accumulating on stomach and hips, put on 7lbs. I was not myself, didn’t want to go anywhere or do anything. I persisted for 5 months, then family was coming for Xmas and I went shopping several times and nearly had 2 car accidents, I fell over 3 times in the house and smashed my head twice getting out of the car and once on the fridge freezer. On xmas day I sliced my finger preparing food and spent 3 hrs in hospital . 3 days after Xmas got Covid, my GP told me to stop taking Letrozole as not to take it with anti viral medication for covid. Well after only 2 days I felt great! No joint pain at all, and all the symptoms kept vanishing. I forgot what it was to feel like my self again. After 4 weeks off, I called my oncologist and said I can not go back on this medication.
She has given me a script for Tomaxifen , it’s been 5 months now and I keep looking at it and can not commit to it in fear of side effects. I’m 65 years old, feeling good with a fast step and yesterday was my 1 year anniversary from my surgery and had tests done and saw my surgeon and I’m all clear but he wants me to talk to my oncologist and try Tamaxifen . What do I do?
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May 8, 2024
Amber says:
I am 37 and have the same issues you have but I’m in Tamoxifen. I feel like I am missing out on life with my family. I’ve been on it for 4 years now. The first maybe 2.5/3 years were fine. Very mild side effects. Then bam… I can’t vacuum my house without absolutely pouring sweat, I can’t sleep at night, I’ve gained a ton of weight, I’m exhausted every day, my anxiety and depression have gotten worse, I have no sex drive, the list goes on. I just don’t feel like it’s worth this. I am missing out on some of the best years of my life. My son is 15 so I won’t have many more years of him living at home. I’d rather LIVE a happy life and enjoy my family than to continue taking it and miss all of it.
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March 25, 2024
Christine Tiley says:
Hi Joanne, I’m 77 years old, had a Grade 2 hormone positive tumour removed from my right breast on 19 December 2023 - lymph nodes negative - followed by 20 sessions of radiation. I’ve been given the all clear but my oncologist wants me to take Tamoxifen but I’m really resisting it. I still get hot flashes despite my age, and still have uterus and ovaries intact so the research I’ve done into Tamoxifen side effects don’t fill me with delight. I travel overseas a lot (live in Australia) and worry about the stories of blood clots in the legs. I’m considering not taking Tamoxifen and taking my chances.
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July 26, 2024
Ann Geyer says:
Hi Christine, did you start on the Tamoxifen? I'm facing the decision to start or not?
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July 7, 2023
Casie Helms says:
Hey Peggy, I was diagnosed with the same thing as you. DCIS and I had a medium sized tumor about the size of a grape. I was also E & P+. I was 34 when I was diagnosed and first had a lumpectomy. Margins were 80% filled with DCIS so they took both breast in radical double mastectomy. No Chemo or radiation. I have been on Tamoxifen now for 9 years. I still have 2 to go since I was so young when I was diagnosed, I have to be on it for a little longer than usual. I have not done great on the Tamoxifen, but I was told that I needed to continue since I was high risk. It does cause a slew of side effects, I feel nauseated constantly, I have pains all in my legs and the abdominal cramping and headaches are with me every day. I also am extremely sensitive in the sun and will burn very easy and also pass out from heat exhaustion. I really want to stop taking it, but I am scared that the cancer will come back so I don't. I don't want to tell you not to take it because it may save your life, but I will tell you that it is not fun being on this drug. Some days I just feel like I can't deal with it. Hope this helps. Feel free to email me if you have any questions.
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September 20, 2023
Carmen says:
Hi I had dcis no chemo and I did do radiation. I'm currently taking tamoxifen for 5 yrs. The pain is horrible in my legs. Amy advise on what I can do to help the pain?
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November 24, 2023
Katharine Willis says:
For leg cramps I have found drinking tonic water (has quinine) helps.immensely. I take gabapentin and grape seed extract for hot flashes. I have also done accupuncture for hot flashes and it was so helpful in the beginning but seemed to not work as well later on. I will complete 5 years of tamoxifen in May 2024.
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October 13, 2023
Carolyn says:
Tamoxifen is not pleasant but better than the alternatives. For leg pain and cramps, I take Magnesium every evening. I sometimes also use Magnesium cream for cramps, rubbed onto my calves and feet before bedtime. Additionally, I was recently recommended to take electrolytes (Hydralyte) to replace the salts lost from excessive sweating in hot flashes. I found this helped to improve my stamina; I wish I’d started the electrolytes 4 years ago when I began Tamoxifen!
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February 15, 2024
Estella says:
I took tamoxifen and I stopped 2 months ago. I still don’t feel better. I have bad memory loss, depression, aches and pain and bad headaches
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March 31, 2024
Kim says:
I stopped tamoxifen 6days ago after being on it for 5months I was on letrozole for 2.5 yrs but the joint pain became to much .when I first started Tamoxifen I got a bit of anxiety and loss of appetite about 4 weeks into taking then it settled then a week ago the anxiety and nausea became unbearable so I stopped I have oncologist appointment in 2 weeks so will discuss either reduced dose or a different AI
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July 12, 2023
Sandy B says:
Hi I’m Sandy. I was diagnosed with atypical ductal hyperplasia in 2021 at 29 years old. I was told I had a 44 percent increased risk of this turning into breast cancer. Have been taking tamoxifen for the past year and a couple of months ago I did stop taking it for about a week. The side effects have been very taxing on my body, very difficult for me to work, get things done around my house and take care of my family (4 kids). I do have the help of my husband, but I don’t think he truly understands the depths of the side effects of this medication. In addition to these side effects, my oncologist had not scheduled me a follow up appointment to do bloodwork so I don’t know how long my blood counts have been abnormal for. So, since May of this year I started doing labs to check my blood levels and we have done them two additional times to see if they were improving. My white blood counts has been lower each time. From 3.95 in May to 2.18 now. So PET scan has been ordered to check for any possible lesions, I have been told that they don’t expect to find anything but just being cautious. I have been feeling like a healthy diet, exercise daily, self care and limited stress might be the best alternative to this medication.. I have tried all of this in combination with the medication and it does not work because I never feel rested and I cannot focus, foggy brain all the time. This has definitely been a trying time. So after the scans I’m considering getting off of this and maybe trying holistic path.
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August 21, 2023
Stacie says:
Try taking the tamoxifen at night I started sleeping way better you got this!!
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April 16, 2024
Dorothy says:
I too am reluctant to take tamoxifen the doctors allow me one month to let my breast heal before taking this medicine, but I don’t want to take it because of a terrible side effects and I could get uterine cancer. I might start it, but if the side effects are bad. I will go off of it and just keep watch and see what happens. I am 62 past menopause
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April 27, 2024
Elizabeth says:
What medicine are you being put on? Tamoxifen? You should be on an Aromotase inhibitor since you’re past menopause. Also ask them to test your tumor and see if you truly have a high risk of reoccurrence or not
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April 27, 2024
Elizabeth says:
What medicine are you being put on? Tamoxifen? You should be on an Aromotase inhibitor since you’re past menopause. Also ask them to test your tumor and see if you truly have a high risk of reoccurrence or not
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June 30, 2023
Michelle says:
I’m 42 and been taking Tamoxifen for a year. I too was scared to take it initially however I think it’s definitely worth giving it a try as you won’t know how it affects you until you try it. If the side effects are too problematic you can stop it again. I’m struggling with exhaustion and fatigue most days and speaking to my oncologist today I’m going to try a 6 week break to see if things improve and then go from there. I do have some brain fog and other menopausal symptoms such as mild vaginal dryness (there are creams that help so that’s not a problem) some hot sweats at the beginning but nothing too drastic! Good luck in whatever you decide ladies ❤️
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April 10, 2024
Sharon Brooks says:
I was put on letrozole first after a lumpectomy and 15 sessions of radiotherapy. This drug was diabolical! It was so bad I couldn't get out of bed everything hurt. After a short break I was then put on Tamoxifen. Within two weeks I had to come out in a horrendous rash on my neck chest and shoulders. This rash had a life of its own! it was sore, it was itchy it felt like I had thistles down my clothing, at night it felt like freezing cold water was running down my neck and would wake me up!
I didn't realise at first it was the Tamoxifen and I spoke to the cancer nurse but nobody knew anything about the rash. I saw immunologists and dermatologists. After hours of research, I came to the conclusion that it was UV rays that had permanently affected my skin. Tamoxifen apparently is a known light inducing drug and affects some people more than others. This was in 2018 and I am only safe from UV during November to January. Not long. Once February comes I then have to cover up in Protective UV clothing, and wear 100% suncream, Uv hat & UV scarf. Every single year this happens, six years on! What people don't realise is that UV comes through windows is reflected off the ground, grass snow et cetera. It's only when the UV level is number one that I can cope. I have a special app which tells me what the UV level is. For example April, it is now 3 to 4. I only took this drug for a month at the most and my poor skin is damaged. What is very disconcerting is nobody knows enough about this drug. You were left on your own.
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June 27, 2023
Michele says:
I am in the same boat! I have had the tamoxifen for over 2 weeks and I’m scared to take it. Idk what to do.
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January 15, 2024
Debra Owen says:
I also was on Letrozole and the side effects were horrible. Have a prescription for Tamoxifen 10mg and am terrified to start it. I decided to take 1pill every other day for 2 weeks and then 1 pill a day. Hopefully there won’t be any severe side effects
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February 20, 2024
Mary says:
I took Letrozole for 2 years. There were many side effects affecting what my doctor called quality of life so she switched me to tamoxifen. I have been on it two months. The hot flashes are horrible (even though I take Gabapentin). At night I have one an hour. Many during the day. I had to stop taking it because my quality of life took a serious dive. So now I go back to Letrozole which I dread. It is the lesser of two evils. I would like to quit all of it but when I tried to explain this to the oncologist she told me no. I just don’t know how much longer I can go on with joint soreness, weight gain, hair loss.
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March 17, 2024
ClaireL says:
Hi there. I am one year out from my BC diagnosis, lumpectomy, chemo and radiation (which I have dubbed--cut, poison, burn. My OncotypeDX score was high, so chemo was recommended. Subsequently I tried Anastrasole, then letrozole, and now Tamoxifen. I have been militant about my QOL (Quality of Life) expectations as a previously 67 y/o, very fit and active woman. The big issue has been joint pain--arthralgia is the medical term. Let's face it, estrogen is our female body superpower, and not having any (which these drugs do) is terribly difficult for some of us. I finally asked for the statistics. There is a 1% difference in my survivability in 20 years from taking an AI drug. 1% ladies. I have decided not being able to live my remaining life in the way I want to is worth the additional risk, so I'm going off all these hormone suppressants. I would probably make a different choice were I 47, not 67. I also found a new drug called Veozah that has really helped me manage the hot flashes. It is quite expensive if not covered by insurance but it works super well. Best of luck making your decisions. I believe we all have the right to call the shots--the doctors make their recommendations but they don't live our lives.
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April 12, 2024
Mary says:
Thank you for your honesty! I am learning so much as I try to determine if I will take hormone blockers. I had a bilateral mastectomy with clear lymph nodes and no radiation or chemo. I am not interested in debilitating side affects as I'm 60 and working.
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July 11, 2023
Laura says:
I took tamoxifen for 10 years I stopped taking it two days ago what will happen will I have side effects from not taking it
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August 11, 2023
Lynn fortune says:
This is hard to read. So many women trying to figure out the best options. Especially because one size does not fit all. And the studies and science are constantly changing. I read as much info about my stage 2 lobular cancer as I felt warranted. I had a mastectomy, chemo, radiation and reconstructive surgery. I took Arimidex, brand name for 10 yrs based on the info I read. The first 3 to 5 months I had some brain fog. But I was use to it as a working Mom. I eventually didn't notice any side effects. My personal opinion is try and hang in there. I think it can be a benefit from keeping the cancer at bay. It's been 13 yrs and I am 69 yrs old. Best wishes to all who have to deal with this disease. I did not feel any difference when I stopped taking the drug.
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March 25, 2024
Christine Tiley says:
Hi Michelle, I’m in the same boat. The Tamoxifen is sitting in my cupboard like a time bomb. The lumpectomy and radiation was bad enough that I just want to get on with my life without the side effects of this drug.
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May 5, 2024
Bonnie says:
Give it a try! Don’t be afraid. You could have much better results than many of the ladies posting here but you’ll never know until you try.
I have been on T for 7 months now. The side effects are annoying but honestly, I live with a husband who has mental illness and because of that, stress and depression were part of my life anyway. You learn to deal with the hand God dealt you. Wishing you all the best.
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June 27, 2023
Michele says:
Hi Madi I’m in the exact situation that you are. I’m confused and scared and don’t know what to do.
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June 30, 2023
Michelle says:
Hey gang! I'm so glad i found this! I had double mastectomies and chemo for a DCIS that escaped the duct (dense breasts didn't show cancer at my annual for YEARS). Anyway, my oncotype was 29 so they put me on Arimidex. NO. Joint pain, muscle spasms, severe depression (I've never been depressed, I go more towards worried anxious crazy lady), and mental/dementia-like fog. I stopped and refused to get on anything else for 6 months. My gut tells me to treat it naturally b/c that's who I am. Then doc convinced me to try Tamoxifen. It sat on my counter for weeks then I tried it. 2 days in, I had horrible headaches and insomnia. Btw I'm already in menopause b/c of chemo at 45 so the hot flashes were already there. Anywhoo, after doing my research, I read that 5mg works the same as 20 for DCIS patients. I know mine was invasive but who care it's either 5mg or nothing. So far, the 5mg is much better. Still some sleep stuff and frequent urination, but SO much better. How is there not a better way to prevent by now? This stuff is so toxic!! Love to all of you and man what a journey.
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August 22, 2023
Mellany says:
Hi , I feel so sorry for all of us going through this , I wa diagnosed with Stage ) Non invasive DCIS , But after fir Lumpectomy , I had positive Margin and I became stage 1 invasive DCIS , Had a second surgery , Nod Biopsy , All came negative , 20 sessions of Radiation , Now I have to start Tamoxifen and I am scared , I cant stop thinking about all the serious side effects that come with it , I am 49 years and my doctor told me that I need to take it maybe a bit more that 10 years , I know by heart this is wrong , With Tamoxifen you prevent one disease , Then you invite other cancers and diseases to your body , I do want to have quality life , I just dont want to be alive . So I decided to cut my 20mg to 10 to see how that goes , If I have to I will take that 10 mg very the day to make sure that I won't be taking more than 5mg , I have been reading and studying for a long time regarding Tamoxifen , And there is not much difference between 5m and 20mg , But since The protocol approves 20mg , All doctors stick to it .
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June 3, 2023
Barbara says:
Have you considered tamoxifen 5mg everyday or 10mg every other day.(babytam). The side effects are very minimal if at all and is shown to be just as effective in DCIS patients. https://www.oncnursingnews.com/view/low-dose-tamoxifen-shows-continued-efficacy-in-adjuvant-setting-at-10-year-follow-up
Ask your doctor if this is an option. Wishing you all the best.
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September 2, 2024
Vonda Miller says:
I have been on Tamoxifen for 3 months at a dose of 5 mg/day. I take a 10 mg pill every other day. My legs started aching to where sleep wasn't easy, and my thighs felt very lumpy from swollen lymph nodes. I've cut it back by half, and my symptoms have greatly improved.
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June 10, 2023
teressa says:
Im almost to 10 years of Tamoxifen!! Its doable .. Im not sure what I will be like off of it.. I cant tell what side effects are from Tamox or getting older.. lol
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July 2, 2023
Julie says:
Did you find that tamoxifen made your skin age at accelerated rate?
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November 19, 2023
Sherry says:
Tamoxifen within a week of taking it every other day has dried my skin out horribly.My vision went blurry and dry eyes.I don’t want to get breast cancer back but I’m absolutely miserable on these pills.I haven’t had one in two days and I feel so much better
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February 10, 2024
Sharon says:
Hi all,
Boy have I been struggling with Anastrozole. Some days I can hardly stand. The common factor that I’m seeing from this forum is SIDE EFFECTS. I’m so tired of hearing myself saying, IM TIRED, dog tired.
Sick of complaining, getting scared to death by doctors saying you will put yourself at risk by not taking medication. I had Hert 2 + BC but man oh man, quality of life sucks!
I’m trying a Naturopath this week. There has to be an alternative
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October 5, 2023
Silvi says:
I’m up to 8 years on Tamoxifen, wanting to know if anyone else is getting heartburn from long term use?
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February 13, 2024
Jacqueline L Cole says:
Yes for the last few days I have had that problem. I have been on tamoxifen for 2 years. It just appeared out of nowhere. Hope you get to feeling better just another side effect to deal with
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April 27, 2024
Elizabeth says:
Have you tried a lower dose of Tamoxifen? They are finding success with MUCH lower doses of tamoxifen that has almost no side effects
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June 12, 2024
Vickey says:
I started tamoxife and two days later I had triple hot flashes not able to sleep very tired but finally about two weeks I started sleeping better but Hot Flashes is pure evil my clothes stay wet from the top of my head to the bottom of my feet and thinning hair
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June 4, 2024
Vivien Billington says:
I am 76. I have exactly the same feelings about not taking Tamoxifen. I’ve had a lumpectomy & excision, margins are clear, just waiting for radiotherapy. My gut feeling is not to risk any of the side effects as I am normally healthy & do not take any medication, definitely leaning towards taking my chances without Tamoxifen.
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June 4, 2024
William says:
My wife, Catherine, is lying in the hosp. This is her 24th surgery over 12 years. She worked in oncology, but after having brest cancer and doing very well with chemo, was put on tamoxifen for 5 years. Within 2 years her joints begin disintegrating starting at her ankles. The doctor and his colleagues at the Specialists Hospital that performs her surgeries has concluded that this has to be the cause of her condition. Since then, we have met 2 other young ladies in their mid thirties that have had breast cancer and have used this drug, and both have had to have ankle surgery
Sincerely
WD
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May 13, 2023
AMYWORKMAN says:
Im 52 i was 51 when they found a dinkey breast lump they took it out and did radiation i cant ake tmoxafin i got hit by a car 22 years ago and i have a hard time walking any way but it mad my legs ceze up on me i have a home that has stairs i cant go with out walking up stairs so im not taki im going to ask my doctor for some thing else my pup has to be taken care of to
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June 17, 2023
DONNA JONES says:
My legs seized up too. It was extremely painful. I had to take Pregabalin, Tegretol, and Baclofen the whole time. It worked once we figured out the dosage that worked best for me.
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April 2, 2023
Sally says:
I've been on tamoxifen for nearly six years now. Diagnosed in 2017 at 57. Lots of side effects, fatigue, night sweats, hot flashes, the works, emotions all over the place. Managed two years pretty consistently, then menopause so they tried me on AI's which were way worse. Compliance has been hard and I've taken lots of breaks without telling the doctors sometimes. Then wanted to get back a year ago and the doctor approved 5mg at four years in, no side effects, lots of trials at lower doses. I've just upped to 10mg to see how I tolerate that as that is a more effective dose. Anyone who's thinking just stopping, try a lower dose and tell your doctors or don't if they disapprove but I'm going to bet they will reduce the standard dose to 10mg in a few years time. They need to do better on helping with compliance, this stuff is hard but taking something is better than nothing if you can do it.
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May 1, 2023
Maddie says:
Sally:
you are so right!! i just read about a completed study in the Journal of Clinical Oncology about taking 5 mg of tamoxifen.. they call it Baby Tam. Click on ascopubs.org and enter "low dose tamoxifen study". I found this thru a Dr. Eleonora Teplinsky on Tik Tok. Very interesting and I will be talking to my oncologist. She wanted to initially start me on 20 mg. I just keep staring at the bottle. Needless to say this is what got me researching. We have to be our own health advocates I guess and I"m ok with that...just want to do the best that I can. I always say, two steps forward, one step back, always a step ahead. All the best to all!
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May 23, 2023
sally says:
There are a bunch of studies from Italy on low dose tamoxifen for women with in situ ductal and the results were equal to 20mg, they were taking 5mg. Northwestern just started a large trial for 10mg for invasive BC, I can't go on it because I've already been on it for many years. I don't love it but I can tolerate 10mg, huge difference, and if I couldn't tolerate 10mg then I would try 5mg given the results of these new studies. It's all better than staring at the bottle which I have also done :)
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June 3, 2023
Jessica says:
I too was prescribed a low dose of tamoxifen-starting at 5mg as preventative, and cant stop staring at the bottle. I had my surgery to remove LCIS on April 26th and am really concerned about taking something that cause me to become more anxious or depressed. I know I need to take it though. All very confusing!
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May 12, 2023
Kathy says:
Hi all, so nice to find this group! I was diagnosed with er/pr + her2-, stage 1A, grade 2, in May of 2019. I had a bilateral mastectomy and 32 days of radiation. I tried two of the aromatase inhibitors but could not tolerate either of them, so stopped. In April of 2022, I had a local recurrence in the same breast. Stage 2, grade 3 with Lymphovascular invasion. I had a lumpectomy without clear margins, 4 months of AC/T chemo, then 30 more rounds of radiation. I tried the 3rd aromatase inhibitor for 3 months, but I could not tolerate it due to brain fog, fatigue, and severe joint pain. Then 3 weeks ago, I started 10mg of Tamoxifen. Although my doc gave me 20 mg pills, I cut them in half. I stopped it 3 days ago due to nausea, severe brain fog, weight gain, fatigue, severe hot flashes... I now don't know what to do. My oncologist told me these are my only drugs for defense. I have decided to get the Signatera breast cancer test, which will tell me if my tumor's DNA is still circulating in my body. If so, I'll probably go back on one of those nasty drugs.
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August 11, 2023
Anne says:
HI Everyone!! Anyone who had trouble with a fibroid during Tamoxifen treatment and what did u do?????????
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August 21, 2023
Cat says:
Yes! I had a large and growing fibroid after 4 years on tamoxifen. Ended up having a full hysterectomy at 46, brought on menopause but actually symptoms were no worse than being on the tamoxifen anyways. Didn't last long and now feel fine, pleased not to have a fibroid that swelled my uterus to the size of a 5 month pregnancy!!
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April 26, 2024
Heather says:
Hearing this terrifies me. I am only 42 and just had a lumpectomy to remove high risk masses. They say I'm at an 85% risk of getting breast cancer and want to lower that to 42% if I take this for 5 years. I keep researching the side effects and I just don't know if I want to start. I am extremely active with sand volleyball and weight lifting and I can't imagine my quality of life if I experience everything being spoken about here. I was honestly on the fence and then found this site and now think it's becoming a hard no for me and maybe to take my chances?? Does that sound stupid? I don't know what to do
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May 27, 2024
Dawn M. says:
I would highly recommend you look instead at a double mastectomy with nipple and skin sparing and reconstruction. It can potentially reduce your risks to the single digits. However, review all the possibilities with this procedure ans discuss with your oncologist. Good luck and God bless
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August 4, 2023
Tami S. says:
I’m so thankful to have found this site! I’m 60 yrs. I am 8 mos. Post opt.from my big surgery. Here is my story, hoping that someone can relate and give me their feedback
I had Stage 1-A, invasive ductal carcinoma, grade 2, 1.5 cm. 0 lymph nodes
Estrogen driven, 0 family history, 0 BRACA, 0 HER, 0 Genetic markers, ONCO score 11.
I had 16 yr old implants so my course of action after much thought and consultation with a specialized plastic surgeon, was to kill to birds with 1 stone ( so to speak) after learning that if I just did lumpectomy and radiation, 1. I, might not be able to tolerate the 6 weeks of radiation, 2. The existing implant might not tolerate the radiation and I would end up needing the big surgery anyway. And cancer is sneaky.
I had Double Mastectomy's with tissue, nipple sparing reconstructive surgery all at the same time , 7 hour surgery on Nov 7th 2022, , I was back to work at 6 weeks. I’m in good physical shape and thin my nature.
I had a full hysterectomy 2017, non-cancer related.
Oncologist recommended Tamoxifen 20mg. And I started taking Jan 2023. From there it’s been downhill, I never knew what hot flashes and night sweats were, OMG! And the list has grown from there, everything that’s listed in the above thread. The body aches, and fatigue, brain fog, legs cramps, loss of appetite, sweats & chills And then to combat those symptoms, Dr.;Puts me on blood pressure medicine & anxiety medicine for sleeping . Then lowered my dosage to 10mg. In June, fast forward. Same issues and now I’m struggling with keeping weight on. So I have as on 3 days ago, cut my 10 mg. In 1/2 , now taking 5mg. And I can tell a difference as of today, my aches are not nearly as bad, and I did not have any daytime flashes yesterday or today. I see my oncologist in 2 weeks.
I’m on Tamoxifen as a preventative measure, but honestly thinking about stopping. Quality of life is important, and I work and it’s interfering with my ability to function.
I’m going to step out on faith ( I’m a religious person) and get back to living.
So after all of this, has anyone else decided to stop with my similar experience.
To everyone on this thread, God Bless you, we are survivors!!
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December 19, 2023
Laura McCandliss says:
I can't help but relate to all of you. I was on Tamoxifen in 2014 after a single mastectomy (left side) with stage 0 breast cancer ER/PR positive. I took it for 6 months, at that time, depression and brain fog, as I was told, was not a side effect. Horrible side effects! I wrote a blues song about it. It's on YouTube. I got a 2nd opinion and they said they don't give hormone therapy for non-invasive cancer. I threw it out but had horrible side effects.
Look up the song.... Tamoxifen blues
https://youtu.be/bF8USyABUyM?si=ISCxmgYQLx28wJPs
I am not giving medical advice, just spreading awareness!
9 years later still cancer free after not taking it. I'm thinking the 2nd opinion was right!
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June 22, 2024
Judi F. says:
Tammy I was diagnosed with the same thing in April 2024 and I am conflicted about even doing radiation. No mastectomy for me as margins were clear after lumpectomy. Thinking of no meds. My mom is 94 and taking Letrozole. She’s miserable. I would rather live a shorter, active and happy life than be miserable longer.
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October 10, 2023
Genex Pharmaceuticals says:
The decision to stop taking Tamoxifen, a medication often prescribed for breast cancer treatment, is deeply personal and can be influenced by various factors. While it can be effective in reducing the risk of cancer recurrence, its side effects, such as hot flashes, mood swings, and fatigue, can be challenging to tolerate. Additionally, the recommended duration of treatment can be quite long, which may lead some individuals to reassess its benefits versus side effects. It's crucial for patients to have open communication with their healthcare providers to make informed decisions about their treatment plan, taking into account their individual health and circumstances.
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February 10, 2023
Amy says:
I was prescribed Tamoxifen for BC risk reduction last November. At first no side effects apart from a big hot flash on Day 1. Then the SEs seemed to rotate around: a few bouts of mood issues in December; forgetfulness; a week of hellacious anxiety in January, followed by weeks of depressed mood; lots of hot flashes in January. I had slightly elevated blood pressure in January (above my lifelong low/normal BP), but this month, my blood pressure has shot up to 155/80! I'd been feeling crappy, not sleeping well, and having foot swelling, but didn't even think to check my blood pressure. And it was my dental hygienist that found the high BP--the doctor prescribing Tamoxifen never mentioned anything about monitoring that. So I'm frustrated that in order to *maybe* not get BC by taking T, I'd have to give up a thus-far reliably healthy part of my system. Which at age 47 I am not willing to do.
Fortunately, my oncologist is willing to try me on a reduced dose of 10mg. Hopefully that will work out.
But it really does feel like the doctors are just dropping us into the ocean and seeing if we can swim or not.
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July 12, 2023
Alyce Williams says:
I was diagnosed in 2019 stage 0 yep 0. Had a left mastectomy due not be able to get my margins clear. I have been on tamoxifen for 3 years. Over the past couple of months I have noticed my feet swelling, weight gain and my blood pressure has been very high. Checked it yesterday afternoon and it was 149/100. I have made the decision to stop taking it as of today. I just stopped having periods over the last six months but my blood pressure is to high to continue doing this. My regular BP is 117/76 or so. I’m active work out 6 days a week and eat healthy. I just don’t want to have to take something for my blood pressure and tamoxifen as well. My doctor never told me to watch my blood pressure it for swelling either.
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May 30, 2023
Michele says:
Hey everyone. Good to read everyone's messages. It's so comforting to relate to everyone.
Yesterday my oncologist finally agreed that I could stop taking Tamoxifen. I have somehow managed 4 years and 4 months. Can't believe it to be honest as it's been awful. I hated it so much. But I lost a dear friend to cancer (not breast) during those years. She lost her life in 9 short months at age 42. And it motivated me to keep going. But honestly ladies, the aches, the brain fog, the sleepless nights, hot sweats...it was terrible. Now at 50 with kids still in the house and a crazy busy career, I honestly am at my wits end. And no libido either. I want to say poor husband, but poor ME too. lol. Anyway I can't wait to see it leave my system but I have to say I am really worried that I will never feel like my old self again. I have got everything crossed for everyone else that on this board and suffering too. Look after yourselves.
Oh and PS. I also felt that I was just told to sux it up. :(
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June 23, 2023
Victoria Leonardo says:
I was diagnosed with insitu breast cancer in 2019. Recommended lumpectomy, 21 treatments of radiation, & 20mg. of tamoxifen daily…That tamoxifen was horrible for me…Ok, hot flashes, yeah. Brain fog, yeah…. But the weirdest body pains I’ve ever experienced…You know the feeling of walking up a flight of stairs made of metal, & then bumping your shin on one of those stairs??? Well I had that sensation ALL of the time 24/7!!! Up & down both legs!!! Then swelling of my left leg with pain envolved there too!!! 3 months ago I asked my Dr. if I might be removed from this medication…He was a bit dismayed, saying that unfortunately there is a 50 to 70% chance of cancer returning…I’m hoping not…This cure for me was worse than the disease…
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October 30, 2024
Bj says:
2022 diagnosed breast cancer stage 2
, Her 2 positive. 16 weeks chemo, lympectomy surgery , 12 weeks radiation and 2023 started nyrlex which caused problems in walking, painful skin rash, brain fog, throat swelling ,dental issues, hair thininng so we tried anaztrozal , and even tho not as severe it was Harsh as well. Tamoxifen has been tolerable but n
Symptoms are the same just not as harsh. Everyday is a new day so i exersize,and
Make better good -healthy choices. The therapy medicines are brutal but I am a survivor.
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September 5, 2024
Pam Rothe says:
I was diagnosed with Stage 1 invasive ductal carcinoma in 2016, at the age of 40. My tumor was a little over a centimeter. My genetic tests were negative, but both my grandma and aunt (mom's mom and sister) had also had breast cancer prior to this time. I had 6 rounds of chemo, a year of herceptin, bilateral mastectomy, and reconstruction. I was then put on tamoxifen in 2017. My aunt had been on it when it was still a new drug and didn't give any indication that it gave her any problems, so I had no problem going on it too. I immediately gained about 25 pounds fairly quickly and initially had hot flashes for maybe 2-3 months. After that I didn't really seem to have any bothersome side effects. However, after about 18 months on it, I started having horrific periods. My OBGYN did a hysterscopy with D&C with good results. Then again about 5 years later the periods got really bad again. Ultrasound showed the endometrium at 17 mm, so I had another hysteroscopy with D&C and then talked with my oncologist about not taking the tamoxifen anymore since it was suspected that was the cause of the period issues. My last dose was on September 3rd and I'm looking forward to finding out if some of the other annoying, but not particularly bothersome issues I've had will go away or get better.
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February 28, 2024
George says:
Hi I've been talking tamoxifen for nearly 10 years I'm done it's making my life hell I do understand why people come off it ..I had it in my mind I should be grateful and its keeping me alive it's affected my mental health and lost my job ..should I stick it out don't know what to do
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October 14, 2024
Marta says:
Dx IBC - inflammatory breast cancer, stage 3.
chemo 5 months, right breast mastectomy, 10 lymph nodes removed with 9 positive, cancer found in tissue removed at surgery.
3 weeks after surgery:
I went on Tamoxifen for 2 days, had left eye occlusion. Oncology stopped Tamoxifen until eye specialist clears me. I have follow up with oncologist in November.
I have anxiety about not being on oral “chemo” pill. I have been thinking of removing ovaries…15 years ago I had partial hysterectomy due to hemorrhage. Not sure how that would help or hurt the recurrence.
-m
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March 25, 2024
Teri Stute says:
Oh that wonderful drug tamoxifen. And I'm being sarcastic. 2 weeks after I started taking it I found a difference in myself. After antidepressants, anxiety meds, weight gain, uncontrollable emotional outbursts, ending with me wanting to jump off the roof of my house I stopped taking it after my foot doctor looked at me and blew his stack because I looked so horrible. It took me 3 years to scratch my way back up to being normal and I'm still not there yet but very close. I wouldn't take this shit if I knew I was going to die because of my quality of life was so low and so horrible that I couldn't even drive a car
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September 10, 2023
Julianne says:
Hello! DCIS/Atypical ductal hyperplasia/hormone receptive 0 stage right breast. Had lumpectomy in January 2023 followed by 25 rounds of radiation. Taking 20 mg of Tamoxifen nightly and I’m MISERABLE! Brain fog, fatigue, sweating to the point I have to take a shower midday, nausea, I could go on and on…I want to stop taking the meds. I feel like daily quality of life (which I don’t have right now) is more important than the small percentage of recurrence. Am I stupid? No idea what to do. My oncologist basically told me I have no choice and suck it up. Help!
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September 19, 2023
Manja says:
I was taking Tamoxifen before going to sleep and was miserable until I change the taming. I take it at 8:30am every day and I feel much better. It is tolerable now.
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October 21, 2023
Midori says:
Your body your choice. Very easy for these doctors to say you have to do something. I wonder if they would say that if they were going through what you are.
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December 22, 2023
Ruth says:
Your question makes complete sense to me. If a drug takes 3 years of quality time out of the rest of your life to add 3 months to your life expectancy, that's too expensive. My numbers may be wildly off, but the question is a valid one. Has anyone read studies on the effectiveness of accomplishing the same aromatase inhibition with dietary changes instead, for the post menopausal among us? Switching to anastrozole increased my discomfort instead of relieving it.
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February 7, 2024
Liz Page says:
Age 66.6. Diagnosed 12/23 Her2+ aggressive, lumpectomy, second surgery to clear margins, none in lymph nodes. Low ONCA, no chemo advised though had no peace regarding radiation. Was given the option of Deborah Trials. Regarding this my thought was if radiation is the gold standard why are they even running these? Did one round of radiation and stopped. I tried the gambit of medications - Tamoxifen, AI's (left me addled brained) circled back to Tamoxifen (out of fear) currently take 5 mg.- oncologist would prefer 20 Mg. Despite this low dose, I have thinning hair, vision blurred overnight, horrible night sweats (worse than menopause), under boob sweats often results in horrible stinging rashes, (have tried a number of bras - so long underwire) trying to find one that doesn't chafe and wicks moisture, mouth sores, trigger finger, leg cramps, hip pain, facial rash/acne, dry skin, vaginal dryness, periodic breast tenderness, and itchy nipples. Other than the guaranteed afternoon under boob sweats I have found no consistency or pattern to any of these symptoms. I strongly consider quitting T altogether. When I re read my list of symptoms I think I need to listen to what my body is telling me. I adopted a plant based diet and follow Chris Beats Cancer which has been empowering and a game changer. Also, I refused to take a raft of other medications to off set side effects of T. Prior to the C I was normal body weight, no familial history, tho under a lot of stress which I believe was a huge contributor to the emergence of this condition - the medical profession does not inquire about this. From all of the posts I have comfort that I am not alone in this. I agree each person needs to listen to their own body and find a path of personal peace.
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June 17, 2023
Cammie N says:
Hi all! I was so happy to find this article and the comments. I was diagnosed last August with invasive DCIS er/pr+. I had multiple tumors. Lumpectomy and reconstruction. I had clear margins and also clear lymph nodes. I did 20 rounds of radiation. Also should be noted I was doing topical hormone creams for about 3 years prior to being diagnosed. I am no longer doing them. Overall feel very lucky with my outcome. I also was told to take tamoxifen for 5 years. I started it and felt awful very quickly. My Dr. said to give it 3 months and that symptoms would get better. They did get slightly better but overall I had the same complaints as most, body aches, mentally not myself almost depressed and foggy, hair loss etc. I dropped my dose to 10mg and felt guilty doing so but I felt slightly better. I then went to see my oncologist and told him how I felt and that I was not going to do this for 5 years. I asked him about Raloxifene (in then same family of meds as Tamoxifen) because my OB had told me some of her patients switched to this. He said he would rather have me on Raloxifene (at the full dose) instead of 10mg of Tamoxifen. I have been on this for 2 weeks now and I do feel more like myself. I know this is not the standard drug used for breast cancer but if it works and I am feeling better, its worth it. Curious if anyone else has tried this. I am also signing up for Signatera which someone else mentioned here (Thank you!). Seems promising for early detection!
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March 29, 2023
Bibi says:
Hi everyone. I'm 35 and was diagnosed with breast cancer 9 months ago. I had a lumpectomy and I am currently taking Tamoxifin. I also take an injection in my tummy every 3 months called Zoladex. 9 months ago I was fine, perfect, happy go lucky. Now I'm just miserable, depressed and I don't want to do this any more. I have 2 kids aged 8 and 6. I don't even know when last I played with them without feeling exhausted or irritable. I am moody all the time, if not crying or just want to be alone. I feel like running away from my own body. My oncologist doesn't seem to understand because when I explain my situation, he says "No it's fine". Like really? How many times I almost wanted to tell him that he has no idea what I'm going through. I am on the verge of leaving Tamoxifin because I cannot be this way. 6 months of misery and I still have 4 and a half years left? No no no. I think I'm done. I know I sound crazy but I'm still young and I'm living a horrible life.
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September 29, 2023
Amanda Kärrstedt says:
Hi everyone.
Im so happy that Im mot alone in this and also sad to read that so many suffer. I was diagnosen with Her2 positive breastcancer nov 2019 and was surgery first, then taking out eggs(IVF) and then started chemo and then radiation in 2020. Ive been on tamoxifen meditation (once a day) and Zoladex injections (once a month) since Jan 2020 and july 2020.
Its been really horrible with hot flashes, sleepless nights, anger, irritation, sadness, anxiety, depression, panic attacks, weight gain, hard to concentrate etc.
And I also feel that after i was treated I was working and studing and was stressig alot. And now it Feels like It just hut my again, The tiredness, The fatigue, brainfog.
But it Feels like people around me think im crazy and dont understand.
My energy is so low.
Ive been thinking if I will be able to make it 5-10 years with these medications. I was thinking of aiming towqrds 5 years. But The weight gain is making me frustrated. But im trying to love and accept this version of me roght now, trying to find a Spiritual path in all of this, doing alot of meditation and yoga to still my mind and it is helping.
If there is anyone that wants to talk more about this I would be happy to do that, to be able to help eachother.
Please send to my email:
Amandakaerrstedt@gmail.com
Big hug to you all.
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August 5, 2023
Lisa says:
I feel the same way as so many of you. I don't know what to do. I was a healthy, active person 1 year ago. Then diagnosed with BC, lumpectomy and radiation then tamoxifen. No one seems to understand that I no longer feel like myself. Endless aches and pains that have kept me from exercising, brain fog that is scary. I can tolerate the night sweats, but the musculoskeletal stuff is basically destroying my life. I am depressed. The doctors just seem to think this is what you just deal with to increase your chances of staying alive (apparently in my case with Tamoxifen about a 15% chance of recurrence and without a 30% chance. I feel as though there is no support system and I don't know what to do. Now I just drink more wine -- only way I could take the tamoxifen was to chug it down with wine. I am sure that is not what the doctors prescribed!
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September 6, 2023
Jen says:
Hi Lisa,
I'm in your same clinical position. My lumpectomy was a week ago, and I will start radiation soon. I really DO NOT want to take tamoxifen, and I am trying to learn all I can about recurrence. How were your percentages (30% without T and 15% with T) determined?
I hope you are doing well. I would love an update on your progress. Take care!
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September 7, 2023
Kara says:
Hi!
I too would love to hear about how your percentages were determined. I received different answers at my initial consult appointments yesterday.
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May 31, 2023
Barb Rockenbach says:
My story is almost identical other than I have one more child! I keep starting and stopping six months in but it’s making me miserable
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June 14, 2023
Jane says:
Hi My story is almost identical to yours, I am also 35, I was diagnosed at 32 with Invasive Ductal carcinoma and Colloid Carcinoma. I also had a lumpectomy in April of 2020 followed by chemotherapy, Radiation, Hormone Therapy, I started with the monthly injection and anastrolezole It was absolute torture, not to mention too expensive. I switched to Tamoxifen thinking that it would be a better option but honestly it has been torture as well. I have felt alone as it seems like people think I'm crazy when I tell them the side effects I am having like the bone pain, brain fog , hot flashes, extreme exhaustion, most recently chest pain with horrible headaches, off and on pelvic pain seems the list can go on and on. I am at the point that I don't want to take this crap anymore. I have had severe cognitive changes and have a hard time focusing at work and haven't been able to catch on to everything as I normally would have and think its to the point my employers are thinking of letting me go. I know the job and do it well just have a hard time keeping up. I love my job as a Dialysis patient care technician. Not sure if that is something anyone on here has dealt with but any advice you have is welcome. Sorry for rambling I literally have NO ONE to talk to that is my age and is going through the same situation. Thanks for listening I truly appreciate you all.
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April 7, 2023
Andrea says:
I have just the same problem! 6 months of Nolvadex and I'm thinking about to quit. You can e mail me? My bones hurts me, two weeks of depression, nights sweats, brain fog and leukopenia.
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June 8, 2023
Terri says:
I’m 68 and had a DMX Nov ‘22. Tiny tumor w/o lymph node involvement. After 2 months of research, I finally went to my Oncologist to discuss lab results from my surgery, and to hear his recommendations. I said that quality of life is more important to me than quantity, so I was opting out of taking Tamoxifen. He said that it would only decrease my chances for recurrence by 2-5%, so he agreed with me.
This is my body, my choice, and I will not have regrets about my decision…regardless of a recurrence. That’s that.
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October 21, 2023
Midori says:
Yes!! Totally agree. There is a point where quality of life must be considered. Thank you for your post!!
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August 2, 2023
Carol Kazee says:
I was diagnosed four years ago with DCI ass stage one clear margins. I had 30 rounds of radiation no chemo. They put me on tamoxifen I am mediately started getting severe leg cramps, bone aches, nausea trouble sleeping I actually couldn’t walk. I took it for 18 months and then quit. I’ve been off of it two years now two years ago right when I went off of it I was getting a lot of UTIs vagina dryness was back-and-forth to the doctor. I went in and they did a biopsy. I have thickening of the cervix which is the number one cause of cancer by tamoxifen I don’t have cervical cancer but I’m going in for another biopsy and I’m gonna ask for a hysterectomy, this drug is poison and they do not listen to us women they just say take it. Your symptoms will go away it’ll get better. I’m really angry I have never had the issues I have been dealing with before that drug. Severe joint pain, getting injections in my knees, having my wrist hurt my elbows hurt. Hands hurt fingers swell.
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December 6, 2023
Annie says:
Hi I had chemo , then a right masectomy +radio . Started tamoxifen november +It’s deff not a nice drug - ‘Many Night sweats / chills , fatigue , poor moods +insomnia also. Just wanted to say how long after you came off tamoxifen did you feel better ? As your doc said quality of life more important +I want to try get bk to work in new year - at present thats not really feasible being on Tamoxifen . Thanks for reading/listening x
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July 22, 2023
Jean says:
I am almost 77 and I figure I don’t have much time left. I’m not going to spend five years of it feeling like this. I did the pro & con list, talked to my family. I will call my doctor this week to tell him. I got through three lumpectomy, mastectomy and a reconstructive surgery with no problems and felt great when everything was finally over. Than the pill!!!
I am sorry for you younger women with so much going on in your lives.
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December 27, 2023
Brenda Christian says:
Hi Jean , I’m 72. Healthy & active . I still work part time . I was diagnosed in Oct. It was Found on a routine mammogram. A small tumor, non invasive. I Had Surg 11-3-23. A partial mastectomy . All margins clear . No lymph node involvement . no family history. I have my appointment tomorrow morning for the CT, and will begin radiation. The oncologist said , start tamoxifen. I have been reading and researching . I have 98% decided , not to start this . I’m in the later season of my life . I’m not sure what’s ahead of me , but I believe for me it’s. quality versus quantity. I don’t want to be sick for the remainder of my life. I have been so overwhelmed by this (. I did take topical hormone replacement therapy for many years) I asked the doctor if that was a culprit, and they said probably not .. I’m sorry for all of us that have to go through this. If I was younger, I might try it, if my cancer was more invasive, I would try it but at this point I think I want to live my life for today. I hope someday I don’t look back with regret. Btw, I’m a registered nurse for 42 years. My specialty is ICU Ccu. Not Oncology . this is an arena I know nothing about. I wish each and everyone of you all the best
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August 11, 2023
Rosa says:
I agree with you, I will be 80 next month, went through a lumpectomy 13 years ago and opted out of one of those cancer pils. Now 13 years later my cancer came back in the same breast and 1.8cm size and clear markings,, I had single mastectomy and also opting out of the tamoxifen my oncology prescribed for me. I want quality of life for my years to come. Thank you for your post, and bless you.
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March 25, 2024
Christine Tiley says:
Hi Jean, I’m 77 and have had the same experience as you in December 2023 and made the decision not to take Tamoxifen after reading of others’ side effects. My quality of life is more important than quantity. My mother is almost 101 and if she outlives me so be it. Kind regards, Chris
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June 1, 2024
Jeanne Urbanek says:
I am so glad to have read all of these stories. I am 79, discovered a breast lump which was stage 1, clear lymph nodes, estrogen positive. I had a double mastectomy in April, 2024 figuring that should take care of the cancer. Now the oncologist wants me to take tamoxifen. The research I did before the mastectomy had convinced me I would not take any drugs. After reading all of the experiences on this site, I know I do not want to take this drug. Thank you everyone for sharing.
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July 15, 2023
Bren says:
I am having to make the same decision, I am not sure the extra 2% is worth the risks and side effects. Such a tough decision!
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October 26, 2023
Penelope says:
I was diagnosed in February breast cancer hormone driven in milk ducts 2023 had surgery and got good margins which is good then I had a month of radiation. After that they wanted me to go on to one of these drugs as soon as I finish radiation they said I had 6% chance of it coming back and it would reduce it to 3% I didn’t TAKE IT as I wanted to see my family after getting cancer and having not seen 2019. So I sad I wait till I got back… I’ve been putting it off slowly dealing with all the radiation side effects. I was supposed to go on the first pill for 5 years and I read that is really bad for people have who have low bone density in my bone density is very low. I’ve got arthritis also so I said I didn’t think that was gonna be good for me so now they’ve offered me to tamoxifen … since radiation I’ve been having problems with one of my eyes. I haven’t had anything diagnosed hopefully in the next few days I see what’s up, then I’m reading that this drug can cause cataracts . And it also causes bone problems and possible cancer I just don’t know is it worth it to possibly reduce my risk by 3% to take this drug for five years and possibly ruin my quality of life I’m 57 I have really bad arthritis and anxiety and insomnia already. I can’t imagine making that worse. I don’t see how I would really even survive five years of hardly any sleep and more mood swings again. I just don’t know is it really worth it? I’m just so freaked out I’m supposed to take it tomorrow. I don’t think I will ……already didn’t take the other one. Now I’m looking at this one. I just can’t see it helping.
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September 20, 2024
Marilyn McCourt says:
Thank you so much for sharing. I am 69 years old and have very similar diagnosis. I opt out of the Tamoxifen. Had a lumpectomy and radiation. My chance of a recurrence with radiation 5% with Tamoxifen 3%.
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August 14, 2023
Crystal says:
I am a 30 year old (freshly) who was diagnosed with L breast IDC Clinical stage 1, Grade 2, in May 2023 at 29. The believe I have had it a year prior to diagnosis. I did not 'find a lump', I had to work very hard to get checked because they said I was 'too young' to have breast cancer. BRAC negative.
Had a double in June, path came back with micrometasitis in 1/8 lymph nodes on L side. Additionally, there were small tumors surrounding my 1.8mm original tumor that were not picked up on the MRI. Concluding me in a stage 2.
ONCOTYPE testing was a 12, so barely missed chemo. Thank you God.
R side was benign.
Was referred to radiology, he of course believes I need many rounds 'given my age', however, the long list of other cancers I would potentially be fighting off on top of BC did not seem appealing so I made a very personal decision and said No Thanks.
My onc wants to suppress my ovaries and put my on tamoxifen for 10 years..putting me into my 40s..stating 'you'll likely go into early menopause once we take you off'.
Just a small rant here: Why WHY WHY WHY do they not have any answers for younger women with this diagnosis. Why must they make our reproductive system old in order to deal with us.
Anyway, has anyone my age found something to be helpful? Has anyone done one and not the other, or both? Or nothing at all? I am doing alternative treatments with a Dr. in Spain and am healthy aside from cancer. It seems like all I have in my head is "do this and wait to see if it comes back, or DONT do this, wait and see if it comes back, there really is no cure. Either way, you may or may not have a reoccurrence " How do I come to a point in accepting this treatment while I am grieving my breasts, my ovaries, my child barring years, and the fact that you cannot poison your body back to health. S.O.S.
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December 27, 2023
Brenda C says:
I’m so sorry you have had to deal with this at such a young age . You sound very educated and you have been learning about your issue . I don’t have an answer for you . I’m sorry . I just wanted to stop in and say hi
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February 8, 2024
Nicolette Barry says:
Oh my word reading all this comments and how we all go through the same bad ordeal because nothing good is happening except for the cancer not to come back. I don't like the tamoxifen. I'm 45 almost 2 years in remission.The side effects drives me insane.I'm not my old self anymore.More depressed,anxiety,mood swings, aching body,early menopause,day and night hot flashes which gets the best of me
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June 1, 2022
ROXANNE JORDAN says:
My cancer was grade 2, and I had my left breast removed (tissue saving surgery). My lymph nodes were clear, but they still had me taking Tamoxifen because I was hormone receptor positive. I'm 78, have always been very active, but now I have increased joint and muscle pain. When I E-mailed my oncologist that I was discontinuing the meds, she said "Thank-you for the update. Hope you feel better soon and please let us know if anything changes." I'll see her late this month and will question her answer. In the meantime, I am searching just how long it takes Tamoxifen to leave the system. I want to return to running and weight lifting without all of this pain. Any advice would be appreciated.
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July 2, 2023
pat Ashby says:
Hi I was diagnosed with stage 2 hormone receptor type breast cancer. I was put onn tamoxifen and it ruined my life. The just recently I was diagnosed with a blood clot in my leg, due to taking tamoxifen. My oncologist told me to stop the tamoxifen immediately. I was put on aromasin but have had a four week break. Aromasin does not cause clots but makes you at risk of osteoporosis. I am already on acrete which is a prescription Vitamin D and my last bone density was normal. I am going to ask my GP for higher dose Vitamin D as this has proven to help joint pain. I am not going to take any nasty drugs such as bosphos, there is no way I want bone coming out of my jaw or tooth loss or other serios complications. So starting the aromasin, getting a good diet, starting exercising including Pilates and seeing if GP will help with joint pain. I get really angry about how much we have to put up with as women and where is the research community in helping us. Best wishes to you Patricia
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March 25, 2024
Linda Smith says:
Hi—I’m 75, had a recurrence after 20 years. Tried all 3 Ai’s and felt awful. Now have Tamoxefin, but haven’t started it yet. I’m praying as to if I should take it. God Bless
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May 2, 2023
Samantha says:
Study in New Zealand with promising results for older women.
https://www.hoafredericksburg.com/some-older-breast-cancer-patients-may-not-need-adjuvant-therapy/
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October 28, 2023
Carol Vincent says:
Thank you for citing this! I’ve been agonizing over the decision to take tamoxifen but I think the Danish study (and this entire thread) has made up my mind.
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September 30, 2023
Catherine Metz says:
Thank you for this link. I am 76 (DCIS Class 1a - clear margins and no lymph). With a lumpectomy and radiation therapy.
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April 7, 2024
Irene Smith says:
Catherine, same for me except I am 77. Surgery was March 6, my oncologist went over possible side effects of the pills, but even she said that since they would exacerbate issues I already had...she recommended radiation instead. How do we determine percentage of reoccurence, do you know? Wishing ALL OF US good luck going forward!
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October 30, 2022
Misty says:
I have read that it could take 3 or 4 months to leave your system. I see that it's been that long since your comment, so I hope you are doing well!
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February 15, 2024
Julia says:
Hi been on Tamoxifen for 6 weeks. Other than very sore leg and hip bone pain I get feverish. Mostly cold, but at night will get hot flashes. Am worried about getting on long-haul flight (11 hours) due to blood clot risk too. Should I stop taking it until I can see my oncologist? I flying in 2 days' time. It's an annual trip to see my elderly parents so cannot postpone.
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May 15, 2024
Penny Jackson says:
Had a needle biopsy last December 2023 that showed possible Situ. Had a lumpectomy in January 18th 2024 that showed no cancer. But they are still treating me like I have had cancer and saying my reoccurance rate is 40%. Wanting me to have a MRI and Mammogram every 6 months and now saying to take Tamoxifen for 5 years. Reading everyone's stories I'm just wondering if I should or not. I'm 52 years old with no family history of breast cancer. I fought Post partum depression with my daughter, and know I deal with some depression at times hoping this won't make it worse. Depression runs in my family and my grandmother took her life before I was born. I've already had a hysterectomy but do have one ovary, the hysterectomy was when I was 35. I'm really wondering about starting this medication now. I took my first pill last night. I also have had in the past where medication made my liver enzymes shoot through the roof, and reading this has increase in liver enzymes really makes me nervous.
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May 27, 2024
Dawn M. says:
Definitely get a second opinion. Not sure why you would be put on tamoxifen if you have no family history and had no cancer.
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October 20, 2023
Ann Marie Saccente says:
Recent diagnosis of state 2 invasive lobular, lumpectomy in Aug 2023, 6 days of radiation and now they want me to take arimidex. I have severe arthritis, right, shoulder, hip and knee total replacements in 10 years. Need the other shoulder replacement next year. Im totally against estrogen completely being depleted from my body. I'm already suffering my joint pain, had horribel flashes during menopause. Im 72 yrs of age.
I'm so anxious about this pill, i've had it for a month and can't even look at the bottle. Reading your stories, mine cancer and treatment is nothing.... And I know the quality of my life will change the day I swallow this pill. Not feeling positive .... Ann Marie.
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September 6, 2023
Denise says:
At 68 I was diagnosed with DCIS e+ stage 0 in left breast, no family history of cancer. Had lumpectomy, then second surgery to get clean margins. Had a total hysterectomy at 32 and was on HRT until May this year. Scheduled for 19 doses of radiation due to begin in Oct. Dr. has suggested Tamoxifen for 5 years. Each Dr visit began with "You could have a radical mastectomy" Since stopping HRT cold turkey I have severe hot flashes up to 20 a day often followed by chills and nausea. I have determined to not take Tamoxifen due to having had a stroke 6 years ago and fear of blood clots and bone loss, risk/benefit doesn't seem acceptable . Dr. has agreed to six month mammograms to monitor for further cancer.
I have had thoughts of going back for mastectomy but have fears of lymphedema.
Lack of HRT has given me hot flashes, weakened bladder control, and lack of libido. Having no ovaries and no drugs do I really have a high risk of reoccurrence?
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September 7, 2023
Hello says:
Have you tried vaginal estradiol cream for incontinence? It works! My Alloy has it and is where I found it. It’s wonderful and helps I’m glad you didn’t have a mastectomy! No need for that
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January 9, 2024
Jen says:
Hello, I would like to discuss my experience with taking tamoxifen and explain why I decided to stop. I was diagnosed with stage 1B breast cancer, with no lymph node involvement, but ER-positive, PR-positive, and HER2-negative. When I raised concerns about side effects and suggested changing my diet to my doctor, they didn't listen and even laughed at me.
I experienced severe side effects, including hot flashes, night sweats, and edema issues that made walking difficult. Concentration became challenging, significantly impacting my quality of life and diminishing joy in activities like working out and teaching fitness classes. I couldn't even move comfortably, so I adopted a puppy to encourage more walking, but that too was a struggle.
After deciding to stop taking tamoxifen, it took about four months for the side effects to subside. I now feel like myself again. I've shifted to a high-fiber diet, incorporated broccoli extract and glutamine, and plan to consult with a naturopath for additional steps to maintain my health and prevent reoccurrence. Thank you for this article; it has been very helpful.
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January 28, 2024
Dianne Timmons says:
Hello all - I am 64 years old, had lumpectomy in 10/21 for Stage 1B, Grade 2 invasive lobular CA, clean margins, no lymph node involvement. I underwent 15 rounds of radiation which ended exactly two years ago today on January 28, 2022. I started on 20mg of Tamoxifen on February 14, 2022. Tamoxifen was recommended due to the fact that a DEXA showed Osteopenia and some Osteoporosis Almost immediately after starting on the Tamoxifen, I became extremely depressed - it was as if all vitality had been drained from my body. I could barely function. My Onc referred me to a psychiatrist, who prescribed an antidepressant. However, that only made me sleepy. My Onc agreed to reduce my Tamoxifen dosage to 10 mg. I have been on that dosage since May of 2022 and have been tolerating it ok EXCEPT . . . in May of last year, I suddenly developed severe pain in my right side and lower back. It came after a bout of coughing. I was told by Urgent Care it was just muscle strain and that it would get better so I did not follow up. The pain did improve, but it never went away entirely. Therefore, a few weeks ago, I consulted with an orthopedist who did X-rays. It showed a spinal compression fracture at T12. A second DEXA also showed Osteoporosis in my lumbar spine. I have been prescribed Fosamax, a drug that promotes bone growth. My Endocrinologist commented that bone fractures are frequently seen in women on estrogen-lowering drugs. At this point, I'm wondering . . . . do I want to die from a recurrence of cancer (Oncotype score was 25, so risk of recurrence is 12.5% with Tamox, 25% without) or do I want to become crippled? I am considering quitting the Tamoxifen, will talk to my Onc about it in February. Thanks for listening.
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January 6, 2024
Cindy says:
I was taking Tamoxifen at a 10 mg dose for seven months after my stage 1 lobular diagnosis. The depression and anxiety side effects were unbearable; I couldn’t sleep, and every day was a mental challenge. My oncologist took me off of it, and is starting me on something different.
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July 5, 2023
Sien Zhang says:
Oh, mine! Glad to find this site. I am ER+,PR+,HER2-, stage II IDC. Did 2 surgeries, tumor is small, took 3 nodes out, 2 lymph nodes were positive. Did radiation after the 2 surgeries. Puked once during radiation, other then that everything was fine. I was on Chinese herbs to help my recovery.
Started Tamoxifen 20 mg, right after radiation and lost my hearing. One week after stopping Tamoxifen, hearing coming back slowly.
Took a 3 month break from it and tried again. This time gave me tummy pain, tolerable but my period is not longer smooth. I am currently 47.
I have heard that the week estrogen in soy actually is good for you since it took up the space the cancer cell would take.
Well, my 2 lymph nodes were swelling 3 years before I found that I had cancer. Those 3 years I was on a diet that has lots of soy. I was an experiment by accident now look back. My tumor is small could because I was taking a lot of soy. Anyway, the doc ask me to avoid soy now. I am avoiding it since this is very easy to do.
However, Tamoxifen is not so pleasant. I did stopped it since end of last year. Everything is fine until recently, I got really sore for my right side (my cancer was on my right breast) body before my period. Of course being a cancer survivor, you have more concerns.
I started to research about Tamoxifen again since I am seeing my oncologist tomorrow. Really do not want the side effects.
I do use Chinese medicine for fighting for the side effects and preventives. This is something you can consider.
Thanks and sending love to every sisters here. Hope you find your peace and have a wonderful day!
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December 14, 2023
Ann says:
I thank God for this timely informative group. I have just been diagnosed with ductal carcinoma this November 2023. I am yet to get any treatment as far as it's concerned. I am so informed by the members in this group as far as my treatment is concerned. I am digging out any information and advices in order to make informed decisions on my treatment.
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December 28, 2023
koshikaa says:
Appreciation for featuring the significance of progress screenings. Your blog is a useful tool for spreading health awareness.
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December 27, 2023
Genex Pharmaceuticals says:
Thank you for addressing this important topic. It's disheartening to see many people discontinuing Tamoxifen, and your article sheds light on the reasons behind it. Understanding these challenges is crucial for both patients and healthcare providers. Let's hope for more open conversations and solutions to support those facing difficulties with this medication. Appreciate your insights!
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June 30, 2023
Elena says:
Hello. I’m 69 years old and was diagnosed with invasive lobular breast cancer stage 1 grade 2. Margins clean and no cancer in lymph nodes.. Underwent lumpectomy and 5 days of radiation. I was started on Tamoxifen 20 mg a day in May 2023. Began experiencing symptoms immediately nausea, upset stomach, leg cramps and finger cramps, extremely fatigued. . A week ago developed a severe lower back muscle ache. All attributed to the Tamoxifen. Oncologist states cannot reduce the 20 mg daily dosage because studies have been limited and small . It appears Tamoxifen and the Aromatase Inhibitors present the same side effects. Strongly considering quitting. Oncologist recommended changing medication to an Aromatase inhibitor. I don’t think this will help either. Tamoxifen and Aromatase inhibitors carry same side effects.
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October 7, 2022
Rita says:
I started taking tamoxifen but brain fog, empty mind and irritable stomach plus tiredness are really worrying… I wish doctors would give us individual risk assessment instead of just prescribing it to everyone. I don’t have a medical team. In my country it’s just check up appointments with oncologist every six months…
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November 17, 2022
Key says:
I started taking tamoxifen last year. My symptoms are getting worse. It's not even the sweating for Me. My muscles are starting to ache all over, unwanted hair growth. I can't sleep for over two hours to the point where it may become hazardous to drive. When I complain it like the doctors just brush it off.
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December 8, 2022
La says:
Hi
I don't have an answer for you, but I'm going through some of the same symptoms with joint and muscle pain. I'm a therapist and personal trainer and it is very disappointing I had so much pain. I stopped taking it for now also because tamoxifen stimulates fibroids of which I now have multi-fibroids. I'm 51 diagnosed with stage 1 BC in 21'...had double mastectomy and replacement...I felt great until about 6 m in with the joint pain sweats some sleeping issue. I am having sure for a hysterectomy in February. My doc gave alternatives but the other meds are worse on the muscles and joints. I don't want to be difficult but the pain became debilitating. Cancer is worse of course but I can't deal with the symptoms. Seeking natural means now that im cancer free since the surgery...you're not alone...we will get through this. Jesus is my healer and solution for my life.
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June 29, 2023
Sharon says:
AMEN!!!
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June 30, 2023
Michelle says:
LOVE
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October 13, 2023
Carolyn says:
I have been taking Tamoxifen for over 4 years. Awful, but better than the alternatives?
I take Magnesium before bedtime for aches and cramps. Also Magnesium cream rubbed onto my calves and feet. Only recently I was also advised to take electrolytes to replace salts lost in sweating - why didn’t someone tell me that 4 years ago? It has really helped to improve stamina and overcome fatigue. I hope this is useful.
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June 29, 2023
Raima says:
It sounds a very similar story to mine. I was feeling fine after the surgery, but since I have started taking Tamoxifen, I became anxious, not myself and tired. I didn't know Tamoxifen stimulates fibroids which I have. God help us to know what to do.
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July 23, 2022
Brenda says:
I’ve been taking tamoxifen 3 years since bilateral Mastectomy. This was for estrogen receptive +, non-hereditary cancer in right breast. Previous cancer 26 years ago in same location (had lumpectomy followed by chemo and radiation)
I am now 62 and absolutely hate being on this drug. Seriously considering stopping it short of the next 2 years. Hot flashes, hair loss, brain fog etc.
I’m having a hard time finding legitimate/compelling reasons to continue. Anyone in a similar position???
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October 12, 2022
Maggie says:
Yes! I tested being off of it for 1 week, 2 times this summer and had immediate results. So fast forward to this week October, I haven't taken it for 3 days and already feel better. My brain fog is lifting and so is my mood My joints don't hurt as badly and am looking forward to no more muscle cramps. I am working on my mental part as far as fear, guilt, etc...so will see how this goes! So grateful to have found like minded ladies!
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March 5, 2023
Tina Helms says:
I have been on Tamoxifen for 5 days. So far nothing too bad however it's early. Muscle cramps aching stomach and a couple hot flashes. I DO NOT want to take it but I'm fearful not to. I had DCIS noninvasive bc state 0. Er positive. I really wonder if Tamoxifen is necessary given my diagnosis. If I start to gain weight I'm done!
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August 29, 2023
Maggie Sprouse says:
Hi, I’m on the same boat. Diagnosed stage 0 and already have lumpectomy two weeks ago. My doctor prescribed tamoxifen 20mg. I didn’t pick up the medication yet. Since I did a lot of research on this med and study all these side effects. I don’t know if I want to go through all these hard time most the lady did. I have many friends who is on it, hate it so much.
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September 16, 2023
Heather Shields says:
I have had 4 surgeries on right breast and 2 on the left. All margins are now clear. DCIS. no lymph node involvement. Now waiting to see oncologist to discuss any further treatment. I really do not want radium or hormone therapy. I am very stressed as to what I should do. At my age 78 I am thinking i will take the risk of not going through the treatment. Quality of life is the go I think. Goodluck ladies. You are not alone .
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January 16, 2024
Miriam goerk says:
I had double mastectomy sept 20 after a surgery in 2020 to remove small lump barely a pimple size at 71 did not take the tamoxifen, they found another very small nodule in my other breast,in 2023,After an mri,I have very dense breasts. Who knows how long it was partying in there. I decided to have a double mastectomy as many of you,My oncologist subscribing the tamoxifen it is sitting on my bathroom counter. I filled the prescription but decided not to take it again because they told me I should’ve taken it when I had the first small lump taken out. But again because of the density of my breast I think the cancer was In there. But since they didn’t take an MRI it wasn’t found until 2023 when I got the double mastectomy I have decided to change my diet totally, exercise,,I ordered a couple herbal estrogen blockers, nettle root,estrohalt,turmeric,But the common thread here is the fear of taking tamoxifen and 74 but I am not going to go through all that if it cuts my life by five years so be it,I’m not going to go through all that,to hold the cancer at bay,when. and I’m already,old.After reading some of these comments no wonder it’s sitting on my bathroom counter,If I had spent as much money on researching herbal alternatives instead of drugs maybe this blog would look a lot different
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September 15, 2022
Jenny Eleni says:
When I read what you wrote I felt as if I was “looking in the mirror.” I detest Tamoxifen. Despite counting calories, consulting with a dietitian, hiring a personal trainer, I have gained 40 pounds! I grow a Tamoxifen beard every day and use tweezers. Hot flashes, stinky breath, brain fog, mood swings. I’m frustrated! December will be 3 years and I’m tempted to not even take Tamoxifen in the morning. I don’t see how anyone stays on the medication for 5 years. I’m considering to stop taking it but I’m terrified the cancer will return.
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June 3, 2023
Barbara says:
Please look into Babytam - I too had DCIS stage zero - estrogen positive. I take 10 mgs every other day. Or you can do 5mg daily. I am on my 5th year. No side effects until this year and they are manageable - hot flashes. 5lb weight gain (but that is most likely my fault). I’ll be off it in December. Looking forward to that but the journey on the low dose Tamoxifen has been fine. Please ask your doctor. Wishing you all the best.
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July 26, 2023
Lisa Farrell says:
Hi, I wanted to ask if you are pre or post menopausal. Because I too had DCIS last Fall, surgery only, clean margins taken, but my year after follow up, they found another microcalcification, and no cancer this time, but LCIS with AHL. So hormone therapy is recommended. I am worried stiff, for taking it and not to. I have diabetes and Afib, so I am afraid of the types of meds, and I am afraid of Tamoxifen as well. I also have a history of uterine fibroids so I worry! But I am considering 5 mg. I want a bilateral mastectomy but my oncologist thinks the risks in my case are too high for surgery.
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November 12, 2022
Maryellen Thomas says:
After my estrogen positive breast cancer Diagnosis, radiation & partial mastectomy I began tamoxifen and it was like living in hell! My hot flashes were off the charts, all day and night. I couldn’t take it anymore so my Dr finally took me off them after 3 years. That was 16 years ago. So far, do good..
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December 8, 2022
La says:
Thank you for this...I know everyone is different but this is hopeful
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January 19, 2023
Stacey says:
I lasted 8 months on tamoxifen. It was the worst 8 months of my life. I have Stage 1 Grade 2 multi focal malignant lobular BC. no lymph involvement. Had 2 surgeries (lumpectomies) and radiation. Then was prescribed tamoxifen even though I’m 65 and post meno. By the end I was, without exaggeration, suicidal. I had every single symptom. Fatigue, brain fog, mood swings, nausea, leg and foot cramps, insomnia, metal taste in my mouth, food aversions and so much more. I literally had to reset my body and Mind to get better. 4 weeks since my last does and I am a new person. Not worth it for me. I’m done with all classes of these drugs. I applaud you if you can take them!
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October 5, 2022
Denise says:
I did stop taking the medication, last Wednesday. I feel like my old self again and even lost 5 pounds without trying. The side effects were too much for me. I do worry like you about the cancer returning. I have only taken it for 3 months and it was the worst 3 months. I’m happy again.
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October 18, 2022
Julia Del Vecchio says:
I was diagnosed with hormone positive breast cancer 2 years ago at age 49 to the right breast. I had the recommended lumpectomy with negative lymph nodes. Chemo and radiation was not recommended as beneficial considering the very slow growing and otherwise non aggressive behavior of my cancer. I was starting on Tamoxifen and sadly my life has been a constant struggle for the 2 years I have been taking it. The very poor sleep alone was impacting every aspect of my quality of life. The constant bone and joint pain made exercising more challenging. I have always been very thin and now I have stubborn fat all over especially around my belly. I have abdominal bloating and discomfort. I have brain fog and find it hard to concentrate at work. I have fatigue and lack of ambition due to all the above. My oncologist insists I need to continue taking tamoxifen despite all these symptoms and prescribed a drug to help me sleep. I tried it and it did absolutely nothing for me. I want to live a long life as much as the next person but not if it means suffering for 3 more years of this. I am athletic and do hot yoga regularly eat healthy bla-bla-bla my efforts have not overcome the side effects of tamoxifen. Next my oncologist suggested another drug for depression…really…even though I’m going through all this I am still a joyful person. I’ve always have been optimistic and happy. I just want a good nights sleep. Tamoxifen is such a cheap drug there aren’t any incentives for drug companies to fund studies on the most therapeutic dose for women whilst minimizing side effects. The recent one out of Italy was promising but specifically for hormone receptor positive stage 0 ductal carcinoma in situ. Millions of women are on tamoxifen. We deserve more research on this drug and better ways to minimize the awful side effects. I believe it could mean decreasing the dose for some women depending on the behavior of their unique breast cancer because all cancers behavior is different for every person. I can’t believe we still rely on slashing, burning and using poisons to try and kill the cancer. Chemo of course being the worst. I am very sympathetic to my fellow sisters that have undergone chemotherapy or radiation. I understand that I am fortunate to have caught my cancer early. I am very grateful for this. But when considering quality of life; I have chosen to take my chances and live out the rest of my years without suffering the nasty side effects of tamoxifen. I didn’t even mention the darn hot flashes.. I am leaving out the rest of the other side effects because those are distressing but not directly impacting my health. I have hopes that perhaps if not our generation but the next will not suffer the horrific treatments of today. Better yet not get cancer in the first place. Prevention is key.
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May 10, 2023
Lori Copes says:
Thank you for your strong words! I am within weeks of the Oncologist doing final evaluation to take Tamoxifen. My cancer is very close to yours. I feel very fortunate, but in some ways guilty if i just choose to not take this drug. I have read everything i can find and come to same conclusion, this is not my path. But have so much guilt from others saying you think you know more than Oncologist. I have to be strong and remember i know myself, they dont at all-15 minutes in a room.
Thank you for your wise words!
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December 8, 2022
La says:
Thank you...you said what most are feeling and even made me laugh a little...and like you ..It was caught early..1 week after my 50th bday..stage 1 her2 positive ..I opted for double mastectomy with replacement....but the side effects of the tamoxifen was .horrible joint pain etc...I have great doctors, but stopped taking the tamoxifen....the alternative was a med with worse symptoms when I'm post menopausal...cancer is worse I know but day to day we have to have function and a quality of life that counts...I'm seeking natural nutrition and treatment...I don't want the cancer to come back but the tam was debilitating...wishing you all the best
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May 12, 2023
Ravi says:
Tamoxifen is the worst. I went through chemo, had a lumpectomy on my left breast and radiation. Started tamoxifen on March 8 so I am two months in now and I have all of the horrible side effects described here. Hot flashes, night sweats, foggy brain, extreme weakness, depression, moodiness. The side effects started immediately. I plan on stopping this drug I would rather go through chemo, surgery and radiation again. That was a picnic compared to this. My oncologist started me on 20 and did tell me to take half of it for a couple of weeks to see if it helped didn’t really change too much. It still wasn’t tolerable at half now I’m back up to the full 20 again.
I will be calling my oncologist to let her know that I am stopping this drug. I am 50 years old and I feel like I’ve lost all quality of life in these past two months. I’ve always been a trooper and follow the rules. This is the first time that I’m actually making a decision based on how I feel and what I want, not what I’m supposed to do. Good luck to everyone else suffering from the same horrific side effects. This drug is terrible.
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April 26, 2023
Star says:
Hi...So last time didn't you take tamoxifen?
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December 9, 2022
Angie says:
Yes I’m the same I was on anastzole for 2 years I got a new oncologist and had complained all the time about the side effects is the medication to my old dr whom just brushed off and said better than the alternative so I took it now I’m on tamoxifen for 1yesr snd I’m seriously quitting it but I fear cancer but even though it may keep me from getting breast cancer it could cause me to get other cancers so looks like you have to choose your evils.
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March 27, 2024
Dana Camerio says:
Just had double mastectomy fid 1cm stage 1 tumor , no pos nodes , 17 oncotype score . Want me to take estrogen blockers! Gave me a 5percent chance of recurrence with this drug and 10 percent recurrence statistic if I dont take ? Was wanting advice on if the side effects are worth this risk? Thanks!!
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May 11, 2024
VICTORIAJLEAGUE says:
My daughter quit taking her tamoxifen it was supposed to be takin for 10 yerars. She said her quality of life was 0 Is this gonna be bad she had triple pos thanks
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April 8, 2024
Bety says:
I had my left Brest removed Feb 29,2024 Had Breast cancer the first time in 1988. did radiation and chemo. my lump was a third of inch and no out side invasiveness. I was also prescribe tamoxifen 20mg. I just have real concerns about the type of life I will have if I take this, Yes, we are all afraid it will return. But there has to be a better solution for this dreaded cancer. Not living or living. I haven't taken it yet, But In my heart it not for me.
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December 16, 2023
Emily Candler says:
Wow, I stopped taking tamoxifen 12 days ago and I feel like a new woman - or rather like the me I used to know. The oncologist said I could take a 5 week break because the fatigue and brain fog were so debilitating. I wasn’t expecting it to make a difference so quickly. Side effects I’d got used to - joint pain, anxiety - have also disappeared. Now I have to make a tough decision about whether to go back on it and put up with the side effects to reduce risk of recurrence. A tough one.
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November 7, 2023
Nicole Bazanac says:
After taking only 16 single tablet doses of Tamoxifen, I had a severe allergic reaction. I was hospitalized for 3 days and was given steroids for 3 -4 months. My face became distorted like Will Smith in HITCH.
9 years later I have now been diagnosed with a metastatic recurrance.
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October 5, 2023
Debra says:
I was diagnosed with invasive ductal carcinoma no lymph nodes involvement December 22, 2000. At that time I has a lumpectomy done on my left breast then chemo and radiation. After treatments my oncologist didn’t follow through and give me tamoxifen because he said I was premenopausal and asked me if I wanted to burn my ovaries up! Who cares I had just turned 41 in October of 2000 and was not having anymore children. About 8 years ago I found that I have the BRACA2 gene as does my sister, 1st cousin and my daughter. My sister had breast cancer like myself everyone else has had no cancer thank God. SO I now had to have my ovaries removed and then a mastectomy to increase my chances of survival. It’s been 23 years this past September since I had my last cancer treatment and all has been clear….what I have to ask now is WHY wasn’t the entire treatment plan followed. The doctor that first treated me didn’t follow through and since I moved out of state and have had this other doctor now over 16 years he didn’t prescribe the drug to me and I believe he didn’t even read my medical history that I had provided to him when I first started seeing him. All of this has come to my attention in the last couple of months as I was looking over my medical history again. So ladies here some of us are now after 2 decades wondering if and when cancer will raise its ugly head again, I turn 65 October 16th. And I do plan on changing doctors or better yet interviewing doctors and choosing the one that is professional enough to go over a new patients full cancer treatment history. We all have to take charge of our life’s and our cancer medical history. Don’t ever be intimidated or afraid to speak up remember you and I among hundreds more pay their salaries.
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October 14, 2023
Tama-lisa Johnson says:
Age 53, pre-meno.
I'm so glad to have found this page! Had DCIS, Estrogen and Pre + in Mar of this year (2023). Had a lumpectomy and 22 rounds of radiation. Started the tamoxifin with very little understanding of the side effects. I had a partial hysterectomy in 2012 so wasn't worried about my uterus. I just quit taking it on my own. The side effects for me were not sustainable. My feet had such pain they felt broken, the hot flashes were close to unbearable.
After reading this article I recognize the mental fog and because I am a sedentary woman overweight (I've lost 25lbs and am taking my diet and exercise seriously) in my 50s I felt the risk for blood clots or stroke was too high.
I haven't taken for 3 days now and I already feel better.
Everyone in my life is against me not taking it but I really feel it's best for me.
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May 9, 2023
Lisa says:
I have been researching Tamoxifen reviews and alternatives for weeks now and have not yet seen any cases similar to mine. I an 61 years old. April 2022 was diagnosed with Stage 2 IDC in left breast. I had a lumpectomy, margins were clear and no lymph node involvement. Surgeon made the comment that I would not need chemo but only radiation. My Onco DX Report showed a score of 40 (high)! Oncologist recommended chemo which I did but I had a bad reaction to it during the first round. She broke the final three rounds up into nine 'smaller' rounds so that I could handle it better. She ended up cancelling the last two of the nine because I was not handling it well. I was working and active as always but one month after my final treatment, side effects kicked in and I ended up in the hospital twice because of the pain and shock of what was happening to my body. Neuropathy literally took my legs out and I could not walk without a walker for weeks. Had to leave my job (this was in November 2022) and have been unable to return to work. I made it through 30 radiation treatments that I completed in January 2023. My Oncologist wanted to start me on Tamoxifen but I was resistant. My body has been through too much! I should also mention that while in the hospital, staff overdosed me on Morphine. My pain doctor confirmed this when I told her and she reviewed my records. I made up my mind then that I was going to take charge of what is prescribed for me. I told trust medications anymore. Anyway, my Oncologist wanted to start me on 20 mg. but, because of my resistance, started me on 10 mg. I have been taking it since the end of March and am experiencing some side effects. I am scared to death to continue on this medication and she is pushing me to increase to 20 mg. Of course, at 61 years old now, I am post-menopausal. This search that I am on for information and reading so many reviews is consuming me because I feel in my heart and my head that I just don't want to take it. I feel that it's a toss up. Risk the effects or risk a recurrence. I am scared and lost.
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May 24, 2023
Nontsikelelo Xulu says:
Hi Bibi, I'm 36, I was just recently diagnosed with stage 2 breast cancer.. Its my 2nd month on tamoxifen and I'm miserable. I actually thought I was the only one feeling like this. But thanks to everyone here... I know thats not true. I also sometimes wanna stop this medication because of the night sweats which started immediately after starting tamoxifen. I'm also taking moringa powder which is more natural.
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May 22, 2023
Gigifiji says:
Hi ladies, I’m waving my white surrender flag also. Diagnosed at 36 with stage 2b dcis and idc with lymph node involvement. Did traditional treatments (chemo, surgery radiation, full hysterectomy)and I’m 2 years in to taking Aromasin/exemestane for post menopausal ER positive. The side effects of the meds seem to be cumulative and have gotten progressively worse for me, I hurt alll the time now and was previously was a very fit and active young woman. I reason with myself many of days saying “well, do you want cancer or dry skin, cancer or bone pain, cancer or thin brittle hair” and while everything in me says that having cancer is worse, my body disagrees. My knees, hands, arms, toes all ache, insomnia and hot flashes all day and all night, mood swings, constant uti’s, desert dry skin and my face has aged 10 years in a matter of 2 years, the fatigue is so bad I had to stop working and I feel dumbed down and struggle holding an intelligent conversation, my words are just not there anymore. I’m miserable. I’ve decided to quit and pursue some natural supplements and life changes along with my Faith in Christ. I can’t imagine doing another 8 years like this. My brain would be chocolate pudding in 8 more years on this med and I’ll probably end up needing a whole body replacement instead of just a knee or hip.
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March 28, 2023
Cathy says:
I had stage 1 breast cancer. I took tamoxifen for 4 years. I asked my oncologist If I could stop taking this drug. I was a full time primary teacher when taking this and the side affects I tried to manage. I would take it early in the morning arrive at work tried to calm myself down. The anxiety I had in the morning was very strange. Luckily with the brain fog I used anchor charts to help with my lessons . I hid in my classroom in the morning . I felt it affected my communication with coworkers. I would convince myself in the afternoon I felt better and would try somehow to find joy in my day. No intimacy with my wonderful, kind, supportive husband . We both missed our connection but celebrated that the cancer has not returned. After not taking tamoxifen I was more myself. I had energy , slept better, and no more brain fog. I think in life we need to remind ourselves to try our best to have a positive mindset. Today is the first day of spring. I am so grateful that this treatment has allowed me to continue to love my husband. Now as retired teacher I can celebrate every second of life with him and our grandchildren. What I have learned from taking tamoxifen the best advice I can give is connect with others who are taking the treatment for support because doubting yourself and wondering if your symptoms are REAL or just your fear that the cancer will return. A shout out to cancer survivors who are on this treatment . Congratulations you are carving out a beautiful future for yourself and family.
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March 27, 2023
LNV says:
Hi, 34 years old. Last year, at 33, I found a small lump in my right breast. I had stage 1, grade 3, invasive carcinoma, N-0; I found it very early, it was small 1.7. I did a nipple sparing unilateral mastectomy, with direct implant. No radiation was required, and chemo was optional because my score was in the middle; chemo only was 1.2% beneficial for me, because of young age, so FOR ME, the side effects of chemo would have been worst than my cancer treatment per se. Anyways, I started tamoxifen prior my surgery last year, and have been in tamoxifen over a year. Because I'm in my fertility years, the docs told me I had to stay without trying to have babies, and with my tamoxifen at least the first two years (until 03/2024), then I have to clean my system , have a baby, and continue my remaining 5 year treatment with tamoxifen. I don't know which side effects are normal and due to tamoxifen, and which symptoms are related to the psychological effects of having/surviving breast cancer. Our bodies definitely change, so is human that we feel some how depress. But godddddddddd, I'm definitely more emotional with this pill. And the mood swings are a real thing. Obviously the night sweats are too, but for me, their not the worst side effects. The emotional rollercoaster, the fatigue and the depression is. Also, thinning of hair and loss of lashes. Thank god my libido is intact though.
I told my oncologist those symptoms, the response was so unsatisfying... " therapy will help, and doing at least 4 days of exercise to alleviate the side effects of the pill". No shit, I told him...hahah . I do exercise, but I have fatigue so its not helping, and obviously the therapy will heal the emotional factors, but then again, I don't want to still talk about the C word. No everyone understands what we have gone through, and every cancer is different. So I don't want a stranger telling me how I'm supposed to feel about something that maybe she/he doesn't have idea.
Anyways... just wishing that I can deal with the side effect for one more year. And stop, and be able to have a baby. Anyone here that have stop the tamoxifen to have babies?
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November 18, 2023
Shawna says:
To LNV: Yes, I have 2 children after tamoxifen use! My oncologist recommended similar usage, however I only took for close to a year and then 3 month clean out. I conceived about 6 mos later, then miscarried. 8 mos later I had a successful pregnancy resulting in my first daughter. I remained off tamoxifen to try for another child and had my second daughter 2 years after my first. My breast cancer was diagnosed and treated in 2013/14, I was 33. I had my children at ages 37 & 39.
I’ve been back on tamoxifen for nearly 3 years and debating quitting, which brought me to this forum. I’m pre-menopausal, but with tamoxifen therapy in a pseudo-menopausal state. My cycles are regular yet a little long, I feel that every month my body is mounting a hormonal battle over the tamoxifen resulting in a wider range between the peaks and valleys of the normal hormonal cycle. This does not seem healthy. Of note, when I came off tamoxifen to have children there were side-effects: I had wild mood swings that tracked with my cycle up to 3 months out. Best wishes!
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April 17, 2023
Dlp says:
Just found this site when looking for how long it takes for Tamoxifen to leave the body. I had a lumpectomy 1.5 years ago. I have been taking Tamoxifen for a year. I am so miserable being on this drug. My oncologist suggested going off for a month. It has only been a week. The muscle and joint pain are awful. Also have brain fog, trouble concentrating, bleeding gums, dry skin. I could go on. I just turned 69 and get very sad thinking that this is my life for the next 5 years. I don't want to go back on it.
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May 4, 2021
Deinya Mautz says:
My mother was a 34 year survivor, diagnosed in 1955. When the opportunity to participate in the initial tamoxifen study there was no question of what to do. My participation was completed without difficulty with the exception of increased hot flashes. While they may be uncomfortable at times, hot flashes are NOT a terminal disease! Having this approach and hoping that if my participation could help even one woman, continuation was not a question. Yes, several years later I, like my sister, was diagnosed with breast cancer. Given the family history the general consensus was that perhaps the tamoxifen delayed onset for 10 or more years. When later genetic testing showed positive for Bracha 2, I decided to have a complete hysterectomy as a preventative measure. Yes, I have had cataract surgery but given my age at the time, the occurrence was considered age-related and not attributed to either tamoxifen or the 4 doses of chemo following surgery. I would do it all over again.
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March 6, 2023
DIXIE says:
Here's a comment that comes with my love for all who've trod this path. I had a lumpectomy in 2011 (no lymph involvement) followed by 30 doses of radiation and was prescribed Tamoxifen. Sounds to me, from these comments, that cruel drug hasn't improved since then. I opted to stop it after eight days/nights of misery and go on an aromatase-inhibiting diet (so easy and yummy) to which I still adhere. At the time I was organising a major community event - and continued doing so for some years, with my normal energy and enthusiasm instead of the half-dead misery that dragged around on Tamoxifen.
Please look into Aromatase Inhibiting Diet (so simple, easy and practical). Just don't ever hope cancer professionals will be interested in your progress from the day you tell them. PS: I am 83, still swimming and organising, drug free and cancer-free.
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May 24, 2023
Doris E Schichtle says:
Hi Dixie.
I just went through a lumpectomy and now in the process of visiting a Radiation Therapist and have an upcoming appointment with the Oncologist for the hormone blockage therapy, which I do not want to do after reading all the comments and side effects listed.
I have stage 0 breast cancer, right breast, Lumpectomy. My Radiation Therapist told me I do not need Radiation Therapy but I have to do the Hormone Therapy. Or I need to do the Radiation soon. I'm so confused seeing all the side effects listed. I don't think I even want to start. I already get feet and leg cramps if I don't drink enough water during the day, which I usually do but if I'm always nauseous how will I handle that?
BTW, I'm turning 79 in early July, so is all this worth having a miserable life in my last years. What would be my chances if I just did not do any treatments on getting cancer again? Would I just go through what I've already gone through and then can decide on treatments also? I do not want to be miserable in my last years. Quality of life is important to me. I'm normally active and always busy (but not lately because of neck issues from a botched job from my pain management Dr. Getting over that but slowly, but I am.
So now what? Risk or suffer through all this mess called side effects??
Opinions welcomed!
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April 15, 2023
Louuse says:
Hi Dixie can you please share which aromatase-inhibiting diet you used I so do not want to take tamoxifen. It sounds like a nightmare. I have the bottle sitting on my counter for a week now. tormenting me. If I take it. And tormenting me if I don’t.
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June 14, 2023
Nj says:
From NIH: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074486/
From "Foods for breast cancer
https://foodforbreastcancer.com/articles/foods-that-act-as-aromatase-inhibitors
(This is the site with the list of foods)
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December 27, 2023
Brenda C says:
Thank you for sharing the Webb site . I am interested as well !
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March 19, 2023
Bonnie says:
I looked all over the internet and can find foods that inhibit aromatase, but not an Aromatase inhibiting Diet. Could you please post it? Going to go off my tamoxifen at 4 years. the manufacturer i use (Mylan) is no longer making it and i am not willing to go through all the bad side effects again to find another manufacturer that works for me.
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June 11, 2023
Victoria deMara says:
Dixie, like others who have posted here, I would love to find the Aromatase Inhibiting Diet . . . which country are you in? And could you provide a direct link?
Thank you for sharing this vital informati
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December 9, 2023
Roxy says:
I don’t know what to do , am scare without am very find , healthy, active ,I have it haven’t take it , I have no health problem at all , but I don’t want an recurrent, reading most comments nobody has said I have take it an am free , alll has said am scared, best of luck, don’t take it, the side affects and more thing in their bodies have pop up ,
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March 13, 2023
Angela says:
I started taking tamoxifen in June 2020 and stopped taking it in December 2022. By the time I stopped it I could not complete basic needs or complete a sentence. It’s been three months I still have tremors, cold flashes, fatigue, brain fog and muscle weakness. I am trying to exercise to build muscle. The doctors want me to try letrozole but I am going to pass and take my chances.. The side effects are just as bad. Did anyone have luck with the tremors stopping? Or with building muscle? Or with the fatigue?
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April 19, 2023
Trudy J says:
I was researching what to expect after stopping tamoxifen and just found this thread. I had a lumpectomy and radiation for left breast, stage 1 DCIS. I was 51 when diagnosed and premenopausal. Yesterday I completed 5 years on tamoxifen, taking 20 and 40 mg on alternating days. Today is my first day of not taking it. My oncologist had suggested during my pervious appointment that I could do 5 more years on an aromatase inhibitor. My husband and I had already decided that I wouldn’t take the AI. I have been feeling worse and worse over these last 5 years and didn’t realize until seeing some of the posts here that I am probably having tamoxifen side affects. I could handle the hot flashes and night sweats, but the joint pain is nearly unbearable. My hips and knees make me feel like I’m 100 years old. I have cramping in my hands and feet. I’ve gained 35 pounds and now have a belly. The constant aches and pain trigger anxiety and raise my blood pressure. I am hoping that I will feel normal again soon. Thanks to everyone who has shared their journey.
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April 19, 2023
Rebecca says:
Thank you all for sharing your experiences. I have stage 1 invasive ductile carcinoma in my left breast. Scheduled to get a Lumpectomy in a few weeks. Then radiation, the Tamoxifen. Very reluctant to take this drug. But my main question is, how does Tamoxifen compare to standard menopause? All of the symptoms you are all describing are the same symptoms as traditional menopause. Hot flashes, weight gain, moodiness, fatigue, etc. So is Tamoxifen worse than menopause? Does it have more severe side effects? I'm sure a lot of women in menopause would like to stop their symptoms as well. The reason I ask is because I'm considering removing my uterus, ovaries, etc. in lieu of Tamoxifen. Yet all of the side effects are the same. So it will feel like I'm on Tamoxifen because I will enter menopause and the symptoms are the same. Has anyone gone through menopause naturally and also taken Tamo? Are they the same side effects?
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May 12, 2023
Ravi says:
Tamoxifen is not the same as regular menopause. As my oncologist described it with menopause, at least your estrogen tapers off at a normal level. Tamoxifen it’s like you’re slammed into a wall immediately. You are not producing any estrogen.
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May 12, 2023
Valerie Elliott says:
I went through menopause many years ago. My only problem wax hot flashes - no other symptoms. I started Tamoxifen a little over two months ago and do not like the way I feel. Extreme hot flashes, body aches, depression, nausea and headaches. I will try to continue on the Tamoxifen but dont think I will do it much longer if all of these side effects persist. Menopause was never like this!
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January 29, 2023
Michelle Cherrington says:
My Mum has severe hot flushes on this but her specialist is really unhelpful and doesn't offer an alternative despite mentioning at every review.
Mum had her right breast removed and 4 years later it came back on her back which they say was linked.
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September 7, 2021
Clover says:
Thank you for sharing your experience. I had been only recently past menopause when diagnosed with early stage breast cancer, and prescribed Arimidex. It’s similar to Tamoxifen, but supposed to be for post menopause. I lasted less than 2 months on it. Couldn’t get out of bed, cried a lot, joints all hurt quite a bit (and I walk daily and do yoga, so couldn’t have that happening!) I’m glad that you found alternatives to that awful drug, and hope you are doing well!
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January 11, 2023
Debra S Gurnack says:
I am currently taking tamoxifen as a preventative medication. I have put on 20lbs constant hot flashes and night sweats along with legs cramps and edema chin hairs and thinning hair. My doctor recommended tamoxifen to reduce my possibility of getting breast cancer since my great grandmother, grandmother and mother all had breast cancer after turning 80. I am not according to my DNA have the receptors for breast cancer. I am tired of my hair falling out the leg and toe cramps the constant hot flashes. I am thinking of quitting this
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March 4, 2023
Niovis Mesa says:
Please
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January 10, 2023
Safaa says:
my sister had terrible side effects after taking Tamoxifenand the Dr. could not think of any other medicine. Is there any medicine name that I could discuss with the doctor
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January 29, 2023
Michelle Cherrington says:
I would be very interested to know this as well.
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March 31, 2023
Tenboerb says:
I took femara for one month after lumpectomy. Wild mood swings, paranoia. Went to Tamoxifine, some bone pain, hot flashes but broke out in hives head to toe. Went to Raloxofene, WAY better! But now Im allergic to it as well.
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October 13, 2021
Sherry Hayes says:
I had DCIS 14 years ago and left breast I had 37 radiation treatment I decline to take tamoxifen at that time now I'm having a little blood come out of my right nipple when it is squeezed Mamo and Mr I was negative doctor wants me to go on tamoxifen for five years I really don't want to start this would like to know more about side effects I have had a complete hysterectomy when I was 23 I am now 65 thanks for any information
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August 15, 2022
Karen Admire says:
I am 58 and was diagnosed with early stage hormone receptive breast cancer right breast in 2019. I decided to have double mastectomy due to my wanting reconstruction (later discovered Precancerous cells in the other breast) I can’t remember my exact score for chance of reoccurrence, but it was definitely extremely low. The dr put me on tamoxifen for five years. I have since gone through menopause and have had minimal side effects. The one side effect I am having is so bad that I am considering stopping the tamoxifen. I’ve gained 30 pounds on this medicine and majority of it is belly and bloating. I believe this is due to the cortisol in tamoxifen. I am going to discuss further with my oncologist before I stop taking it
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April 26, 2022
Irmarie says:
The side effects are worth my health. I did it for my daughter. It’s not easy. Now I am at 20 days left of the 5 years in 20mg tamoxifen. Can’t wait to feel like myself again. With no night sweats until my real menopause comes along!
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September 27, 2022
Ioanna Exadaktylou says:
Irmarie will you stop the pill after 5 years.? Here in Greece they insist on me taking it for 5 more.i want to stop it.i m up to my limits
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November 3, 2022
Nicole says:
Ioanna, I am from the US. I didn’t want to take tamoxifen 10 years so I asked if there was a test that would evaluate the differences between 5 and 10 years. There was , it was a fairly new test, one of those index tests. My oncologist had the tissue from my tumor so I was able to take it last year, 4 years after my lumpectomy . At first my insurance didn’t cover it, but later they did. I had to ask about this test, no one offered information about it before. Maybe you can ask about this test too. It is the reason I could confidently go off Tamoxifen after 5 years.
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January 22, 2023
Rosa Corey says:
Wow, never knew there was a test. Going to ask Sloan if they are able to do this. I have been on and off tamoxifen for the past 5 years and the side affects are awful. My oncologist wants me to continue but I really don't think I can.
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January 27, 2024
Kit says:
The test is called the Breast Cancer Index. If your tumor was sent for an Onca score after surgery, they save it for 10 years. After 5, you can request the test. I did 17 months of Letrozole and felt awful, so switched to tamoxifen 9 months ago and still am a shell of my formerly energetic self. After reading this for hours last night, just decided I’m done, at least for a while. Quality of life is suffering, and I want to move forward. Maybe I’ll go back on it at the 5 year mark if the BCI indicates it’s necessary, but I want to at least TRY to get my personality back.
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October 27, 2021
Christine J Breen says:
I am 70....complete hysterectomy at 22...own my own life coach practice. Still work 3 days a week. Had estrogen driven breast cancer....not brcc type, not hereditary....(no cancer either side.)
Had lumpectomy. My test result was a 2....on the test that had to stay below 26 to avoid chemo. All test results were great.
Am on Tamoxifin now, 6 weeks.....Constant brain fog, I can't concentrate to work, write, all the things I enjoy. Bloated and abdominal pain all the time. All the side effects seem so risky. Longevity in my family is well into the 90s. I have a positive attitude, am a spiritual person, love art, writing, walking, .....just feel non plus about everything....thick headed and sit far more than I used to.
Do we know accurate stats on reoccurrence of cancer without Tamoxifin?
Thank you. This is not how I want to live my life out, but I do want to live my life out❤️. Christine
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April 13, 2022
Liz Adams says:
You raise an excellent point, Christine. I am 53 and live in New York. Not one of my Oncologists can give an answer regarding accurate stats on reoccurrence without Tamoxifen.
I stopped taking a month ago and feel more like myself. Debilitating joint pain, mental confusion and general feeling of being unwell are all gone.
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December 8, 2022
La says:
I'm in NY too diagnosed w HER2 estrogen positive stage 1..at 50 in 2021.... I decided on a double mastectomy... took tamoxifen 1year post surg... horrible joint pain muscles... I'm a personal trainer.. it was debilitating... alternatives were a med post menopausal..with worse symptoms.... i heard tamoxifen stimulates fibroids and uterine cancer...they found multi fibroids now... having a hysterectomy in two months....I know cancer is worse... I have faith in Christ AND am doing the work to find healthier ways to stay cancer free... praying all the best for everyone!
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August 11, 2022
Karen Maisy says:
Liz,
I went off tamoxifen a week ago after taking it for 2 1/2 years, wondering how long before it is out of my system totally. Diagnosed July 2019, widespread DCIS no lymph node involvement. Left side mastectomy with 2 failed reconstruction attempts. Implant failed due to the blue dye used to determine margins destroyed an area of skin (DCIS was very close to the skin). DIEP flap surgery failed 9 months later due to poor blood flow. That alone has left me a mental wreck. The tamoxifen has let me with brain fog, very emotional, and unable to lose the 20 lbs I put on after the last failed surgery. I was told the only reason to take tamoxifen is to reduce the remaining breast. No history of breast cancer in my family and at 65 I don't want to live like this anymore.
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September 20, 2024
Marilyn McCourt says:
My oncologist put my cancer information through Predict computer program. It shows the risk of cancer coming back in 10 years.
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September 2, 2022
Tara says:
Christine, you indicate your oncotype score was 2. That seems to me like your chance for recurrence while taking tamoxifen would be something like two or three percent? So it would seem to me that if tamoxifen reduces the chance by 40% of a reoccurrence that it lessens your chance of a recurrence by around 2% tops? I in no way want to tell you what to do but you should really ask your doctor to try and pinpoint about what percentage you are at risk for reoccurrence without tamoxifen. It would seem to me the difference would be very small.
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May 20, 2023
Judy says:
I came here because I am quite confused and want to know if the tamoxifen to just not feed any cancer cells that might appear. I had lumpectomy almost 5 years ago. Onco score of 2 which meant 4% chance of cancer recurrence while taking tamoxifen. I read if you don’t take tamoxifen that the percentage goes up 50%~50% of 4% is 6%. I was in tamoxifen for 2 months and the side affects were too much for me. Sadly almost 5 years out cancer has returned. Now just trying to figure it all out again. Thinking it would’ve come back with or without the tamoxifen. I was pre menopausal then and now am menopausal- thinking I will try the other meds, hoping the side effects won’t be horrible- also hoping to see if half dose will be good.
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February 24, 2023
Rosie says:
I was prescribed tamoxifen as a preventative almost a year ago but have been too afraid to start. I’m 40yo. Is it even possible to feel fine on this drug?
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July 31, 2023
Natasha Swinford says:
I started tamoxifen at 42. As much as I did not want to take it, I don't think my side effects have been too bad. For the first ocuple years, they were minimal. It's really hard to know what would have naturally occurred at my age and what was from the medicine. I did start getting hot flashes and over the years, I have gained 5-7 pounds. For me, that is devastating. I'm a fitness instructor and even have a growing YouTube channel. I've always taken care of my body and hate to see a soft belly where there never was one. I also have no sex drive at all. I just made it to 4 and a half years after the doctor testing my tumor and said 5 years was sufficient for me. I stopped taking the pill this month and hope that extra half of a year won't make a difference. I just want to go into menopause naturally and not from the drug and I made it this far. My periods are irregular now and I'm sure I'm in peri menopause. I just turn 47 this month. Since stopping tamoxifen, I find the hot flashes a bit worse but hoping that will ease up, and that I will be able to lose the extra weight. I would say definitely give it a try. You might not have bad side effects.
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May 1, 2023
Cathy says:
Rosie, I am in the same boat. My lifetime risk is 32% and I am considering going on tamoxifen as a preventative measure. Are there any readers who have had an ok experience with the drug?
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December 11, 2022
Sheri says:
I was dx'd in 2014 at 53yo but didn't have positive BRCA. I thought I'd add my two cents though in that tamoxifen can be terrible! As a scientist I needed my brain and it was destroyed within 3 months of taking tamoxifen along with night sweats. I went off. The doctor recommended another drug but I didn't do it either. I prided myself in my work and already had lost ground. I am now 7 years post drugs and no recurrence. I too would love it if they would collect statistics on those of us who defy orders. Everyone should use all of the information they have though to make an informed decision
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April 4, 2023
Krystyna says:
Your comment about having no ca recurrence despite doctors recommending you to take Tamoxifen really made my day. Have been contemplating what to do since I really hate these debilitating side effects of Tamoxifen. It gives me hope that perhaps I can adhere to an aromatase inhibiting diet and not have the cancer come back and all without the burden of taking this terrible medication.
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January 31, 2023
Andrea Berman Brenner says:
I was diagnosed at age 47 with IDC stage 2A with one positive lymph node in 2017. After a left mastectomy and 4 weeks of radiation, I started on tamoxifen. I stopped taking it after about 4 months due to chronic nausea and joint pains. I wasn’t too worried as my risk of recurrence was pretty low. Less than 3 years later, my cancer returned in same breast as localized in the skin. Thank goodness it was grade one and treatable with radiation again. After this recurrence, I decided that I should give tamoxifen a second chance. It’s been about one month and so far, so good. I keep thinking to myself that if I had only stayed the course with Tamoxifen, the cancer may not have recurred.
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April 23, 2023
Elizabeth says:
I am 82 and starting my third week of 5mg, daily dose of Tamoxifen. I had a lumpectomy six years ago and was not put on any medications. My surgeon wants me to take Tamoxifen for a month before doing the second lumpectomy and then to continue with the drug for three to five years. I think I'll be able to continue until the lumpectomy, but it's really a horrible, horrible medication. I'm on a very low dose compared to so many others yet I wake up each morning with a sense of dread -- along with headache, nausea, cramping and diarrhea. And then the anxiety kicks in, including a coupe of spells of uncontrollable weeping. I have been trying to discover information as to the survival rates for those of us in our 80s who opt for surgery alone versus those who have surgery and Tamoxifen. So far - no luck. Anyone have any information about this? So grateful to have discovered this truly helpful group.
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July 1, 2023
Sally says:
I would like to know statistics on 80 plus year olds Diagnosed with breast CA I was diagnosed in Jan 2023 Partial mastectomy in Feb Started Tamoxifen 20mg day in March been on it 3 months dose was decreased to 10mg a day
Sent my Oncologist a message was
Going to stop drug Total exhaustion hot flashes interrupted sleep, weakness unbelievable frequent urination and joint pain naps in chair I was diagnosed at 80 I turned 81 in April this year
He replied to my message he didn’t think my joint pain was from the drug but to see how I felt after being off medication for 2 weeks and If I felt a lot better would look for an alternative. Makes me wonder if I hadn’t had the annual mammogram at 80 years old possibly lived the rest of my like never knowing or needing surgery and treatment for breast cancer with an ancient drug Invasive ductal carcinoma margins clear MRI showed Neg lymph nodes
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May 4, 2024
LaVonne Wontorek says:
I had breast cancer in 2019 on one breast Had stage 2 hormone induced and no lymph nodes involved.Also had 20 radiation treatments.
Also had already had hysterectomy and ovaries removed years earlier due to Brac I.
5 years now with taking tamoxifen 20 mg
And my oncologist recommends 2 more years of taking at age 85.
I still have hot flashes daily and back aches.
I exercise daily and eat healthy.
My question is could I lower dose to 10 MG a day.
Also had cancer index test and it came back at 12 percent which is high.
At my age is it necessary to continue 20 mg daily?
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September 4, 2024
Vivien says:
I’m 76, had lumpectomy, excision & 5 radiotherapy sessions this year. I was prescribed Tamoxifen, but decided not to take it as I am normally fit & healthy & do not want to tolerate any side effects that would spoil my quality of life. They don’t seem to have statistics for over 70’s, it’s probably considered you’re likely to die from something anyway. I’m terrified of getting a secondary cancer that isn’t curable, but have decided I can’t spend the rest of my life worrying about what might happen & have decided to enjoy as many healthy years as I am able & face a recurrence if it happens.
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December 9, 2022
Gwen Kearney says:
I was diagnosed with a pappilary carcinoma in my right breast, an MRI showed something in my left breast as well. Biopsy concluded the left breast had an estrogen fed cancer. I underwent a bilateral mastectomy (when tested all margins were clear) and lymph nodes from both sides were clear of any sign of cancer. My oncologist immediately put me on Tamoxifen, I can't tell you how many times I asked why. Honestly he scared the bejesus out of me because he kept saying Tamoxifen would search out and destroy the estrogen cells floating in my blood stream. And Tamoxifen would improve my degenerative osteoprosis in my hips!! I wasn't convinced but started the medication along with an intense search about Tamoxifen. Within 3 days I had mouth ulcers, a week later everything that went into my mouth felt like broken glass. Then one morning I awoke with a face so red and hot I was afraid to look in the mirror. It took 4 days to get a message through to my oncologist. After much frustration and help from my surgeon we finally connected. He did not seem a bit concerned and even denyed any knowledge that either side effect were Tamoxifen related. I did my research,I knew. My question again to him, I have no uterus, ovaries, fallopian tubes and now no breasts were is the estrogen going to go? And IF it mutates, Tamoxifen isn't going to kill it. No answers, no assurance, no offers to help with the side effects. Long story short....after discussion with my husband I quit Tamoxifen. My surgeon helped with a prescription mouth wash and advised on a cream to start using on my face. All I wanted was facts! I'm 72 and without organs dependent on estrogen what study proves I need to take Tamoxifen? Meanwhile I am getting assistance from our hospitals cancer care coordinator to find a new oncologist to provide necessary blood screening evaluations.
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November 14, 2022
Trudy Madere says:
I have major regret! Started it at 49 years old. It was a gradual thing for me. After 3 years, noticed extreme fatigue, brain fog, body aches/pain, belly fat. I am now almost 57. So have been feeling this way for almost 5 years. Feels like I’m dying, had no idea-it was menopausal symptoms. I hate feeling like this 24/7. I try to do all the right things-exercise, eat right, balanced life.
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March 23, 2023
Audrey says:
I want to thank all the women who shared there story. On 2/6/23 I had a mastectomy of my left breast. Ductal carcinoma, clean lymph nodes, clean margins, stage 1, grade2. Oncologist wants to start me on Arimidex. After researching all the side effects, I am leaning on NOT starting. I have been in prayer about this, asking God for confirmation that I am doing the right decision according to His will. After coming across this blog, I am convinced my quality of life is more important. I pray for health and healing over all of you!
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December 14, 2023
Jill says:
I appreciate not wanting to take Arimidex. Diagnosed Stage 0, Grade II DCIS; partial mastectomy with reexcision in Feb/March 2023; 21 rad treatments. I'm 46 and am post-menopausal, so they started me on Arimidex/Anastrozole. 3 weeks in and I had to stop. Vision problems, brain fog, nausea, dizziness (couldn't drive), painful joints (hands STILL hurt in Dec 2023), insomnia, and severe abdominal pain. I thought I had a UTI or something, but that was neg. Then had abnormal bleeding, followed by an vaginal utlrasound that showed thickening of my endometrial lining. Just had a biopsy last week and it came back "clear," but GYN is concerned as my onc wants to start me on Tamoxifen next week, and it can cause EC— I'm terrified. I get ALL the side effects, as a rule.
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September 6, 2023
Jen says:
Hi Audrey,
I just read your post. I am in your same clinical position, and my lumpectomy was a week ago. Did you stick with your decision about tamoxifen? I would love an update on your progress.
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September 29, 2022
Angie says:
I started tamoxifen February 2022. I have struggled. I can deal with the hot flashes and night sweats but the bone pain, can’t get out of bed, extreme mood swings, no sex life and I’m only 42. I stopped for a week. But I’m also worried if I should stop even though I feel better. I lost motivation and gained weight on the meds too. I was stage 2 IDC er+. My score was 19 so 6% chance return if I take the tamoxifen. Thoughts?
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September 19, 2022
Kim says:
I was dx with dcis stage 0 a year ago. Had lumpectomy (which then showed a 1/3rd of 1mm micro invasive cancer stage 1) Had 20 rounds of radiation. Started on arimidex after that and stopped cause of vaginal dryness (painful). Now on tamoxifen. My onc put me on 10mg per day, but has since cut me down to 5mg because of a new study out of Europe that showed success with that dosage and for 3 years, not 5. He said he’s comfortable with doing the 5mg but not the 3 years because of something with the study being inconclusive on that? I also am debating whether to continue with this or not.... An insert that came on my last refill had results from a study on it. Study was women with dcis taking tamoxifen for 5 years. Out of every 1000 who took the placebo, 17 got bc. Out of every 1000 who took tamoxifen, 10 got bc. Study showed on avg, women w/dcis who took tamoxifen,lowered their chances of getting invasive cancer by 43%, from 17 in 1000, to 10 in 1000.
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February 23, 2023
Sandra Willis says:
I too had DCIS stage 0, Grade 3 with a family history but genetic testing found nothing. My radiologist wants to do 24 treatments, 16 full breast and 8 targeted. I thought that sounded like a little too much and I am going for a second opinion. Your experience and thoughts would be appreciated.
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November 12, 2023
Maureen Storch says:
Hi Sandra,
I am very similar to you, DCIS stage 0, grade 3 noninvasive with clear margins Er/Pr negative , genetic cancer screen negative but family history that put me at 24% lifetime risk before DCIS diagnosis. Oncology offered either tamoxifen or AI as preventative based on my FH. Radiation oncology recommends 16-18 treatments with a boost on the last week of treatments. What did you end up doing? I’m so worried about medication side effects! Thank you
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January 5, 2023
Trish says:
I can’t stop crying after reading about all my “sisters” I never knew I had! Of course, tears come so easily when you feel like we do. Thank you all for sharing. I’m not a medical doctor, but a PhD scientist with access to medical journals & will try to get more answers.
I was diagnosed with Stage 1b IDC in 2016. Started on tamoxifen before lumpectomy + lots of radiation (my memory is horrible). After 5 years, my onco had the tumor tested & said there was “no question” that I needed to stay on the tamoxifen for 5 more years
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March 8, 2022
Virginia Rolley says:
I had stage 2 breast cancer along with it it invaded my lymph nodes on my left side. I could not take the side affects of tamoxifen and stopped. How risky is this for reoccurrence? I’m very confused.
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April 11, 2022
HEATHER MIXON says:
Small lump found in mammogram. Never knew it was there. Size of a staple, also found a microscopic place in one lymph node. I've had both removed and 6 weeks of radiation. It's been a year now. I've been struggling with so many side effects with the tamoxifen. I'm 49 as of March 5th. The discomfort in my vaginal area I can't take. I've been a good sport about the hot flashes and night sweat, depression, lack sleep but this vaginal stuff is a whole new level. I've reached out to different doctors on my team and I honestly get no relief. I feel like I'm just not sick enough for anyone to really hear me. As of today I've not been on the tamoxifen 8 days.and I feel much better. This week will be my 5th time to stop. This time I stopped it on my own do to the vaginal discomfort. I just feel like I'm young to take it and feel so bad and I'm to take my chances. I do have a since of peace about it. Sending the power of understanding to your family members and doctors along with mine. God Bless
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May 27, 2024
Dawn M. says:
I would say in your case it is probably quite risky but you need to ask this question of your oncologist. They have the numbers / percentages and there are tests you were either already given or others you can take to find out. Good luck and God bless
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April 13, 2022
Wish I had taken it says:
I decided to risk it and didn't take tamoxifen for years. I was unlucky and had a reoccurrence. It's scary. I'm on arimedix and Ibrance now.
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April 17, 2023
Diane says:
Sorry to hear that. Hope you are feeling ok. Can I ask what size and grade your tumour was first time around? I am 60 and was recently diagnosed with bc, grade 1 and 11mm in size. Had lumpectomy and radiotherapy. Meant to go on Tamoxifen for 5 years but don’t want to after reading all about it, so would like to know if anyone else had a reoccurrence of a stage 1 grade 1 cancer
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April 26, 2023
Alex says:
Read the book Chris Beat Cancer.
I was diagnosed with DCIS, stage zero 7mm tumor after a routine mammogram. I am BRAC negative. One doctor recommended I have a double mastectomy with breast reconstruction. Another told me I only needed a lumpectomy. The difference of opinions is shocking. I had the lumpectomy and now the doctor is recommending radiation and tamoxifen. Thank you for your comments. If you read the book, it will enlighten you.
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June 7, 2023
Jennifer says:
Alex,
I was also diagnosed with DCIS in 2019. I am also BRAC negative. When it was found, I went for two consultations for opinions as this was new to me. I'll never forget that my doctor said it was the "best worst news" I'd ever get. I was given the same choices. But they were just that, choices. Both breast surgeons gave me the option of elective surgery with reconstruction or a lumpectomy followed by radiation and Tamoxifen. I opted for the lumpectomy also because I was not ready for such a drastic surgery such as a mastectomy. I had my lumpectomy and my sentinel lymph node removed. I did 25 rounds of radiation and I have now been on tamoxifen for 3 years. (2 more to go) I looked at it this way...Anything that will reduce my risk of reoccurrence was something I was/am willing to do. I began with 20 mg of tamoxifen, then went to 10mg. I'm now on 5 mg. I will admit that the radiation will leave you exhausted and burnt to a crisp, but you can do it. I napped every single day because I had to. The biggest issues I have with tamoxifen are the mood swings and the fatigue. I had hot flashes and night sweats in the beginning years, but they have gotten better. We are all different so we will all tolerate the meds differently. What I think of as no big deal may be a "hell no" for you. My point: give it all a shot. You can always say it's not for you but just try. Any prevention that we can give ourselves is another day we sleep easier. (unless you have night sweats!) : ) I just wanted to know for myself that I did all I could for myself. Something is better than nothing, I say.
The rest is up to the fates. Good luck with everything!
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April 2, 2024
Lynne says:
Hi
It’s incredible and saddening what these doctors put us through.
I’ve got a book for you that’s truly enlightening, World Without Cancer.
It’s about Vitamin B 17- Laetrile.
After double mastectomy in 2018, 8 rounds of chemo, yadayadayada, I read everything I can get my hands on. This book is a total eye opener!
Written by G Edward Griffin. I got it from Amazon, where else. Give it a shot. And look up soursop tea!
I use all kinds of supplements to try and alleviate the effects of tamoxifen. I’m having a Breast Cancer Index test done and I pray I can stay off this crap. I feel like an 89 year old woman. I’m only 66.
Let me know if this info helps you.
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October 25, 2023
Mel says:
Hi, I'm 44 and have been on Tamoxifen (20mg) for just over a year, following surgery and radiation for DCIS. Thankfully, I never developed hot flashes - my pharmacist recommended Evening Primrose Oil to combat this and I guess it worked. I have had almost debilitating fatigue, nausea, digestive issues, migraines, and hair loss. Like many, I just told myself to suck it up and live with it. Unfortunately, I developed a sizable uterine fibroid and lesions on my ovaries, which I've never had before, and now my doctors are recommending a hysterectomy. They also told me to stop Tamoxifen immediately and I couldn't be happier about this. I was honestly feeling that 2-4 more years would be impossible. I'm not sure how my mom managed 7 years of Tamoxifen after her breast cancer at 55, but I guess our symptoms were totally different.
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November 12, 2023
Sarah says:
Subject: Anyone with Osteopenia take Tamoxifen? Hello! The comments have been very helpful as I navigate my next steps. I’m 59 post menopausal and had been on HRT for 6 years until last week when I was Dx’d w/ Stage 1A IDC 8mm grade 2 tumor. ERPR +, HER2-. Planning on Lumpectomy and Sentinel Nodes next month, then radiation followed by Tamoxifen. I’m not worried about anything EXCEPT for the Tamoxifen. I already have osteopenia and I’ve heard tamoxifen can be very hard on bone mineral density. I’ll discuss lower dose of tamoxifen when the time comes, as well as effect on BMD. I’d love to hear of any personal experiences with low BMD and tamoxifen.
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June 1, 2024
Annette says:
I am 71 and a breast cancer survivor. I was offered a trial of 10 years of tamoxifen. It was a new drug. At the age of 48. Lumpectomy and radiation. Left side.
There is absolutely no doubt that the side effects can be a challenge.
I worked all through the treatment .. and the biggest issue I had was brain fog and weight gain. My consultant at the time recommended me for the trail. I was monitored for the 10 years and I can still pop in if concerns arise…. Nothing related has!!!.
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April 28, 2024
Claudia says:
I absolutely LOVE Tamoxifen and am very grateful it exists. I'd do anything to prevent cancer from coming back. Yes, I do get hot flushes at 43, which isn't great, and have some more aches and pains that usual and brain fog, but I frankly don't care. I have always had a very positive attitude towards it, which may help me tolerating it OKish. I literally could not wait for the Dr to prescribe it post op and I take it religiously every day at the same time and am planning to do this for as long as it takes! My motto is give me anything that gives me a chance to keep the cancer at bay and I'd take it, no matter what!! Xx
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June 1, 2024
Sk says:
I found my lump in 2016 and doc said it was hard milk gland. We watched the lump annually and in 2022 I decided to have the lump out. Biopsy showed stage 1 lobular so I asked them to do double mastectomy. Labs showed it stayed in that lump and didn’t spread. No cancer in lymph nodes. No chemo or radiation. My left breast that was giving me pain came back precancerous. I didn’t like John Hopkins then I switched to Mercy hospital where I finished healing and got implants. My left breast does not like implant. Some tissue dying . My gene testing showed no genetic for breast cancer but yes to uterine cancer So I had full hysterectomy in 2023 at mercy hospital - I tried tomoxifin and left me with edema and sharp pain in my leg. Switched to anastrozole and pain in bones was awful. I’m already on methotrexate for inflammatory RA. This is new after surgery. I had osteoarthritis and now RA. Switched to letrozole and now I can barely walk. My legs , hips and hands are on fire. Brain fog too. I use to do full marathons and now all I do is crawl/hike with my pups. I noticed my weight was going up so started semiglutifide at my own cost. Works wonders. My weight is exact where it was before cancer.l thanks to semiglutifide. It just helps me eat less. Looking at my pain I think I’ll be in wheelchair before my 5 year anniversary .
My oncologist says tomoxifin doesn’t cause bone damage so I should reconsider or try exemestane.
This is how I found this site. Looking to see what I need to do. I really need to complete my meds. My older sister has breast cancer and came back after 13 years because she couldn’t tolerate the meds. The cancer probably came back long before 13 yrs but it was found accidentally. They were putting a stent in her esophagus which was damaged during radiation treatment in 2009 and X-ray showed shadows on lungs and liver. She’s really struggling with the treatments at the moment. She completed 3 years of chemo in USA and now in UK continuing with something else.
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May 7, 2024
Gail says:
I have not had breast cancer yet, but I have a high risk due to my mother and two sisters having it. I went to a breast specialist today to see what kind of regimen I should be on as far as testing. I am 62 years old. She recommended starting Tamoxifan as a prevention. I have always been very afraid of medication’s and the side effects has anyone here started it who has not had cancer as of yet, but is high-risk? Has anyone over here agreed to do that? She told me of course it’s a personal choice and she understands if I did not want to do it because even getting someone who has had breast cancer to take it isn’t always easy. I’m trying to decide if I should start it.
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May 9, 2024
Ray Anthony says:
I usually take Tamoxifen at night before bed to avoid dealing with the sides. I actually sleep pretty good since it tires me out but by the time I wake up, the worst of the sides have gone and I'm able to get along with my day better.
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September 7, 2024
Liz says:
I was diagnosed with DCIS grade 1a, very early detection had a lumpectomy and 19 radiation treatments. I have been on 10 mg of tamoxifen for 18 months. Supposed to take it for 5 years. I too have side effects that my doctors poopoo. Over the past few months I have really started feeling like I’m aging by leaps and bounds. Low energy, hair loss, brain fog, bad sleep patterns, joint pains ( especially in my ankles), constipation and weight gain with belly bloat. 3 days ago I thought I can’t live like this, it’s depressing and I stopped taking my Tamoxifen. In that short time I already feel better. I am conflicted and not recommending or advocating for anyone else to stop but for me I had to see if these side effects are the medication. For now I’m taking a break and will document my bodily changes before my next appointment with the Doctors. My best to everyone going through this.
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June 4, 2024
Margaret Duhon says:
I took Tamoxifen and had zero side effects other than fatigue and leg cramps.
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October 8, 2024
Barb J says:
TY Margaret D for your positive post…I just started taking Tamoxifen a little over a week ago and all i see and read are the negative comments while I’m trying hard to give it a go after much debate about the pros and cons of this drug. Ieven had someone tell me about getting uterine cancer and a hysterectomy after 4 years and i had only taken 4 doses, very scary! I dont want to go though this again with breast cancer , so I’m willing to give it a go.despite already having some side effects.
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September 26, 2024
Melody De la Cruz says:
Thank you for sharing this insightful post! I can relate to the struggles many face with medication—Lupron ruined my life as well. It’s so important to discuss the challenges of sticking with treatments like Tamoxifen. Hearing from others helps us feel less alone in our journeys. Wishing everyone strength and support as we navigate these tough choices!
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