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Post-Reconstruction Thoughts on “Going Flat”

February 23, 2017

Post-Reconstruction Thoughts on “Going Flat”

Note: This is part 1 of a 3-part series related to our recent XRAY review on Roni Caryn Rabin's New York Times piece "‘Going Flat’ After Breast Cancer."

by Robin Karlin

Roni Caryn Rabin’s New York Times piece, “‘Going Flat’ After Breast Cancer,” brings much-needed awareness to the option of skipping reconstruction after mastectomies for breast cancer treatment or prophylaxis. I do not oppose reconstruction, but I suspect that I might not have chosen to reconstruct if some of the current proponents of going flat had been writing when I made my decision.

As a FORCE volunteer, I have had a few women express interest in skipping reconstruction. I send them the resources that I have found to be the most helpful and supportive of this option. Not Putting on a Shirt is an organization “committed to advocating and providing support for those who are living post-mastectomy without reconstruction.” Melanie Testa is a breast cancer survivor and blogger who writes “For me, beauty ideals and expectations related to the female body are a form of tyranny. I resent that in the face of a lethal disease the conversation turns to hair and wigs, reconstruction and ‘Look Good, Feel Good’ programs.” These new voices resonate with me.

After I found out about my BRCA1 mutation in 2011, I studied risk statistics and prophylactic surgeries. I attended local FORCE meetings and my first FORCE conference. I consulted a psychologist at a local cancer center who successfully helped me make a reasoned decision about prophylactic mastectomies that I would not regret. I never seriously considered going flat despite having some exposure to the idea and cautionary advice from the psychologist about the risks of reconstruction. She urged me to ask questions about complications and failures when selecting a surgeon. In our local group I met a woman who had no doubts about her decision not to reconstruct. Her comfort with her body and her self-confidence made her beautiful. I saw other flat-chested women at the FORCE conference “Show and Tell,” where women volunteer to show off their post-surgery bodies (both with and without reconstruction) in a comfortable, informal setting.

Despite all this I just couldn’t see myself living without breasts. I didn’t really “hear” my psychologist’s cautions. But I did worry, deep down, that reconstruction was not consistent with my usual feminist world view. I searched Google a few times looking for women who chose not to reconstruct for feminist reasons, but I didn’t find much. I knew that I would lose sensation in my breasts. I somehow thought that if they looked “normal” they would help me feel sexy. I proceeded down the normative path despite some embarrassment about what I saw as an abandonment of feminist principles.

I had a serious complication after my reconstruction, and my outcome after four surgeries is far from beautiful. I have learned to accept my body as it is and I make myself feel beautiful by nurturing my health, by exercising, and by dressing in ways that express my creativity. I still miss my former sensate breasts and have found my “foobs” to be pretty useless during sex. What was I thinking, I wonder now? I don’t know whether feminist disquisitions on female stereotypes, sexualization of breasts, and objectification of women’s bodies would have persuaded me to go flat. I do wish those writings had been available and I want to share them now in case they may resonate with other women who are struggling with this decision.

Robin Karlin is a Peer Support Group Leader for the Pittsburgh FORCE group,  a volunteer for FORCE’s Peer Navigation Program, and a member of the Steering Committee and the Research Priorities Working Group of the ABOUT Network.  She participates in the University of Pittsburgh Cancer Institute’s Breast Cancer Research Advocacy Network (BCRAN).  Professionally she is a software engineer at Carnegie Mellon University in the Computing Services Department. Contact at robink@facingourrisk.org.

Posted in: Breast Reconstruction And Going Flat , XRAY
Tags: BRCA , Breast Cancer , Prophylactic Mastectomy , BRCA1 , BRCA2 , Previvor , HBOC , Reconstruction Or Going Flat , Mastectomy

15 Comments

March 1, 2017

Steff Walker says:
Hi!! I was diagnosed with stage 2 TNBC in July 2015, and while going through chemo, found out that I was BRCA1 positive too. Double mastectomy followed immediately after my last chemo session in November 2015. I am flat. Well, flat on one side, flat / concave on the cancer side (I'd initally had a lumpectomy and node removal prior to chemo). Because of the risk of recurrence, my surgeon was not wanting to save skin or nipples. I saw a plastic surgeon last month, to open the discussion about possible reconstruction. I have two options, expanders and implants, or using belly fat to make new breasts. Neither option will get me breasts with any sensation. My surgeon, who is considered one of the top ones in my region, Alberta, Canada, was very forthcoming about the pros and cons of both surgeries and their success rates, need for further surgeries. I know now that I personally do not want implants, and am not judging anyone who does, they are just not for me. So do I have the other surgery, which is somewhere between 10-12 hours in length, with a lengthy recovery time, plus likely revisions / final tweaks, have fat grafting to even out my concave side and make me flatter, or no more surgery at all. Do I get prosthetics? Still pondering this....thanks for sharing your writing!

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April 3, 2017

Tamara Combs says:
I am, also flat/concave. My concave side is my non-dominent side. I'm opting for focussed exercise on that side to move toward flat. ;) I'm a little 2 yrs post-masrctomy and it's slow but, working.

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April 4, 2022

John says:
I'm one of the 1% - males with breast cancer. When I was discussing my surgery with 2 surgeons and mentioned reconstruction, they both said men don't usually do it. I was thinking about having it done later, but now I'm just flat on one side and it's no big deal. I'm a runner, getting slower since I'm 65, but I don't want to have any unnecessary surgery even if I do look a little strange. It's just been about 6 weeks so I haven't taken my shirt off in public or gone to the beach yet. I'm thinking about a good story, like a shark attack. Otherwise, I'm doing well so far.

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April 3, 2017

Lori Rieger says:
Thanks Robin

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March 1, 2017

Making Postmastectomy Decisions: The Right Input is Critical - Facing Our Risk of Cancer Empowered - Facing Our Risk of Cancer Empowered says:
[…] Post-Reconstruction Thoughts on “Going Flat” […]

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February 27, 2017

Go Flat or Reconstruct: Processing Choices to Make a Decision - Facing Our Risk of Cancer Empowered - Facing Our Risk of Cancer Empowered says:
[…] Post-Reconstruction Thoughts on “Going Flat” […]

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February 27, 2017

After Mastectomy: Go Flat or Reconstruct - Facing Our Risk of Cancer Empowered - Facing Our Risk of Cancer Empowered says:
[…] Post-Reconstruction Thoughts on “Going Flat” […]

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April 3, 2017

Tamara Combs says:
Sending love and light. Do whatever you feel is right for you and your family. I went flat, after considering the options, and so love my flat chestedness. I never looked back. No jogbras, no bras, period. I'm decades older than you. Age can make a difference. Be true to yourself!

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November 27, 2019

Brittney says:
When I came across your comment, I literally had to stop to re-read it because your story is so much like mine! I tested positive for BRCA1 and had a prophylactic double mastectomy in 2013 and have since had 3 surgeries following that to correct issues with the implants, etc. Here I am now, questioning what to do next as I just found out about my Allergan implants being on the recall list! The FDA says just to monitor it, but come on! If I wanted to do constant monitoring to lower my cancer chances, I wouldn’t have ever done the prophylactic double mastectomy in the first place! It’s so mentally and emotionally exhausting and frustrating to say the least! Yesterday I met with a Reconstruction surgeon about getting these removed and putting in some round smooth implants! She did give me a bunch of good info though for moving forward! I would love to chat with you more if you’d like...I feel like it’s so hard to find people in a similar situation!!!

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February 26, 2017

Dyanne Baird says:
Hi! I found out ion Feb.23rd, 2012 that I had breast cancer. I was 38 at the time. I make the decision to have both breast removed and expanders put in. At the time I'm doctor recommended reconstruction with implants. I did chemo first than surgery. About 2 months after my expanders were put in and almost expanded the whole way it leaked on my right side. I had it removed. During surgery I aspirated. Woke up in ICU. So they decided to put off any other surgery until I completed radiation. So move forward to 2017. I just had my implant replace due to capsular contracture. My incision wouldn't heal. I had both of my implants removed. Now I'm dealing with if I want to do a DIEP reconstruction or going staying flat. I'm really thinking I'm going to stay flat. My family and I have been thur to much in the last 5 years.

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April 3, 2017

Laura Petranek Arneson says:
When my older sister was diagnosed with Stage 4 Ovarian cancer last year, she tested positive for the hereditary BRCA1 gene. At 53, I didn't hesitate to undergo genetic testing and found that I, too, carried the same gene. After watching my husband's first wife die from breast cancer after 10 year battle at the age of 50, and seeing my sister struggle with surgery and chemotherapy, I didn't think twice about having a complete hysterectomy and double mastectomy. I chose to go flat, and five months post-op, I do not have any regrets. As summer weather is approaching, I think my biggest challenge will be finding tops that fit my former 38DD chest without showing my incisions. I plan to remain "flat" so that I can also use my new body shape to engage women in conversations about hereditary genes and post-surgical options. I also want to thank FORCE for giving me information, peace of mind and the courage to make the right decision for me.

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May 25, 2017

ADRIENNE says:
Kudos to all of the women in the comments who are sharing their stories about their choice to go flat after mastectomy. I always felt that I would need to feel feminine and whole again if I was faced with the choice, but after reading much information on the topic of "going flat," I am now much more open to the idea and I have you ladies to thank for it!

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February 11, 2020

Jacey says:
Thank you all for sharing your story! I found out in 2017 that I am BRCA2 and a month later had a prophylactic mastectomy. I am incredibly lucky, since i had a triple negative ductal carcinoma that was undetected in my MRI or mammograms. I was 35 at the time and had the Allergan implants put in. It was a challenging decision to reconstruct but i had preschool aged twins and felt that going flat would make wearing a swim suits, sundresses, etc uncomfortable. Now I am facing the decision of what to do about my recalled implants. I too am emotionally drained by this. My operations were hard, general anesthesia takes a toll on me. I am attempting to get a team together to preform a prophylactic Oophorectomy and remove my implants in the same operation. I am leaning towards going flat, but it feels like a gut punch every time I verbalize it. I am an athlete and haven't regained my strength with my foobs. The thought of more silicone inside me scares me almost as much as going flat. I live in a rural area and I have had a couple consults, driving hours and hours and haven't liked the vibe of the doctors. I have more appointments scheduled, hoping to get the operation this spring. One operation removing almost all my female parts, ugh.

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August 23, 2019

Blake says:
I just found out that my Allergan implants are on the recall list. I had a prophylactic double mastectomy four years ago with some complications and ended up with four surgeries in four years. After many lumps, biopsies, family history, and my dr’s input - I thought a double mastectomy with reconstruction was the best choice for me. I found out two days ago about the recall. I don’t think I have lymphoma but I do have some lumps & occasional pain & one breast isn’t symmetrical. The fact that I took so much mental/physical energy, time away from my job, family in order to eliminate my risk and anxiety - only now to find out these implants could also be problematic and have been banned in 38 countries, makes me want to have these ripped out immediately. I’m angry, upset, frustrated. I elected not to get nipples with my reconstruction bc I saw no need. But the thought of being flat chested really does scare me. Not scared but kind of panicky. Will I need all new clothes? What about all these new bathing suits and dresses I bought? I actually see my doctor tomorrow for the first time since this discovery. I hope he can help me make a decision but I know it’s up to me. And then again, who will pay for it? Allergan will only pay for new implants. Not the surgery. This is crazy. Does anyone out there have any similar issues?

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April 2, 2021

DJC says:
These stories are so familiar. What a sisterhood, eh? Not a club we wanted to join.... Remember, there’s a reason only war veterans and cancer patients are called “survivors”. I am a BRCA2 mutant with the recalled implants. I was fortunate (sort of - I don’t like it here) to be living in Los Angeles at the time of my treatment and had the best breast surgeons (Angelina’s). My outcome was considered outstanding. But, come on. The foobs are hard, cold, and useless. My children don’t know where to put their little heads when they snuggle against me, and my husband won’t even hug me. The implants have shifted over time, become puckered and there are concerns that one has ruptured and causes my edema episodes. Great.... What’s so impressive about reconstruction even when it’s well done? I would never have wanted implants in my pre cancer life, but I was terrified of losing my breasts, and only now 7 years later do I understand why women go flat. Of course I’m frightened of another procedure, I’m frightened of concavity, and I’m frightened of recovery with a toddler running around. So I’m letting myself wrap my head around what must be done, slowly, and with an empowering plan. I want them out, and I want a beautiful botanical tattoo over the area when it heals. I’ve got my artist in mind. I am buying new clothes for the new chest-less me-to-be, which feels sort of fun since I don’t let myself shop much. I’m working on my abs, so my flat chest has a flat tummy to match. I’m taking those good deep slow breaths. And I know it will all be ok, because I’m still alive. Isn’t that what matters? Good luck to you all, and be strong, and kind with yourselves. We were dealt a rotten hand. Be a badass unicorn and go flat, if that’s what you want. There’s no right answer in this.

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