Decision Checklists & Tip Sheets

Genetic testing in people diagnosed with certain types of cancer may affect treatment options. If you have any of the following, talk to your doctor about genetic testing for an inherited mutation.

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  Breast cancer, early stage: Genetic testing before surgery may help people make decisions about breast conservation or mastectomy.

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  Breast cancer, metastatic: People who test positive for a BRCA1, BRCA2 or PALB2 mutation may qualify for treatment with a PARP inhibitor such as Lynparza (olaparib) or Talzenna (talazoparib). People who test positive for a PTEN mutation may qualify for treatment with the targeted therapy Truqap (capivasertib). Tumor testing may also be required. People who test positive for a mutation may be eligible for treatment with a targeted therapy or participation in a clinical trial.

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  Colorectal cancer, people making decisions about colorectal surgery: Genetic testing may help people make decisions about undergoing more extensive colectomy surgery to prevent future cancers. Women who test positive for a Lynch syndrome mutation may have the option to undergo hysterectomy (removal of the uterus) and oophorectomy (removal of the ovaries) to lower their risk for gynecologic cancer.

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  Ovarian, fallopian tube or primary peritoneal cancer, stage that is advanced stage or recurrent: People who test positive for a BRCA1 or BRCA2 mutation may qualify for maintenance therapy with a PARP inhibitor. People who test positive for a mutation in another gene may qualify for treatment with a PARP inhibitor or another targeted therapy. Tumor testing may also be required. People who test positive for a mutation may be eligible for a clinical trial.

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  Pancreatic cancer: People who test positive for a BRCA1, BRCA2 or PALB2 mutation may qualify for maintenance therapy with a PARP inhibitor if their pancreatic cancer didn't get worse for at least 4 months after chemotherapy . People who test positive for a mutation may be eligible for a clinical trial.

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  Prostate cancer, intermediate-risk or high-risk: People who test positive for an inherited mutation may qualify for a clinical trial using a targeted therapy.

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  Prostate cancer, metastatic castration-sensitive prostate cancer (mCSPC): People who test positive for a mutation in BRCA2 may qualify for treatment with the PARP inhibitor Akeega. People who test positive for a mutation may be eligible for a clinical trial.

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  Prostate cancer, metastatic castration-resistant prostate cancer (mCRPC): People who test positive for a mutation in BRCA1, BRCA2 may qualify for treatment with a PARP inhibitor such as Akeega, Lynparza, Rubraca or Talzenna. People who test positive for a mutation in ATM, ATR, CDK12, CHEK2, FANCA, MLH1, MRE11A, NBN, PALB2, RAD51C or RAD51D may qualify for treatment with a PARP inhibitor such as Lynparza or Talzenna. Additional tumor testing may be needed. People who test positive for a mutation may be eligible for a clinical trial.

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  Advanced cancers of any type: Genetic test results may help identify additional treatment options, such as targeted therapies approved for other cancers or eligibility for clinical trials.

If you are newly diagnosed with cancer or need to make treatment decisions, genetic testing may help inform your decisions. This can be overwhelming and you may have a lot of questions but don’t know exactly what to ask. Here is a list of commonly asked questions you may ask your medical provider, insurance company and/or genetic counselor.

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  What stage is my cancer?

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  Do the guidelines recommend genetic testing for someone in my situation?

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  I had genetic testing in the past, do I need additional genetic testing now?

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  I don't meet the testing guidelines, can I still get genetic testing?

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  Could genetic test results change my surgical treatment options? In what ways?

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  Could genetic test results change my medical treatment options? In what ways?

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  Could genetic test results affect my prognosis? If so, how?

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  Which gene mutations will you be testing me for?

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  If I test positive for an inherited mutation, would that change your recommendations for surgery or treatment?

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  If I test positive for an inherited mutation, are there additional therapies available for people with my stage and type of cancer?

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  If I test negative for an inherited mutation how does that affect my treatment options?

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  Can you refer me to a genetics expert?

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  Is my insurance likely to pay for genetic counseling and testing?

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  Could waiting on genetic test results delay my surgery or treatment?

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  Is there a risk in delaying treatment or surgery until I receive my genetic test results?

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  Are there any additional tests that can help guide my treatment decisions?

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  If I decide not to have genetic testing now, can I decide to have testing in the future? If I do, is insurance likely to pay for testing?

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  If I test positive for an inherited mutation, might I qualify for treatment with a targeted therapy?

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  Are there programs to help cover the costs for genetic testing?

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  If I test positive for a mutation, will my insurance cover the cost of targeted therapy?

Even after treatment ends, genetic testing can help you and your relatives better understand cancer risk, take steps to stay healthy, and learn whether family members are at increased or average risk. Read through the entire list below and check the signs/risk factors that are true for you and your family. If you check one or more boxes, you may benefit from genetic testing:

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  Colorectal or endometrial cancer at age 50 or younger

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  Breast cancer in both breasts or more than one breast cancer diagnosis

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  Breast cancer or prostate cancer and of Ashkenazi Jewish descent

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  Prostate cancer at age 55 or younger

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  3 or more melanomas

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  Ovarian, fallopian tube or primary peritoneal cancer at any age

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  Pancreatic cancer at any age

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  Triple-negative breast cancer at any age

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  Male breast cancer at any age

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  Metastatic prostate cancer at any age

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  A type of stomach cancer known as diffuse gastric cancer

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  Any childhood cancer

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  Any rare cancer

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  Breast cancer at age 65 or younger

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  Multiple relatives on the same side of the family with any type of cancer

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  If you had genetic testing in the past that only looked for one or a few genes and tested negative, you may benefit from additional testing.

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  If you had genetic testing before 2014 and tested negative, you may benefit from additional testing. Genetic testing has improved, and laboratories can now find gene mutations that may have previously been missed.

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  If there are cancers in the family that are not explained by earlier genetic test results, even if you or another family member previously tested positive for a mutation, updated genetic counseling and testing may help determine whether another inherited mutation could be involved.

Even after treatment ends, genetic testing can help you and your relatives better understand cancer risk, take steps to stay healthy, and learn whether family members are at increased or average risk. This can be overwhelming and you may have a lot of questions but don’t know exactly what to ask. Here is a list of commonly asked questions you may ask your medical provider, insurance company and/or genetic counselor.

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  What are the benefits of genetic testing for someone in my situation?

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  Are there any downsides to genetic testing for someone in my situation?

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  Do the guidelines recommend genetic testing for someone in my situation?

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  Could genetic test results affect my prognosis? If so, how?

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  If I test positive for a mutation, what are the certain types of cancers I need to look out for? What are my risks for these cancers?

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  If I test positive for a mutation, how will that affect my follow up care?

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  If I test positive for an inherited mutation, what does that mean for my blood relatives?

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  If I decide not to have genetic testing now, can I decide to have testing in the future?

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  I had genetic testing before 2014 and tested negative. Should I consider additional testing now?

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  I had genetic testing for only one or a few genes in the past and tested negative. Should I consider additional testing now?

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  I don't meet the testing guidelines, can I still get genetic testing?

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  How long will it take to get genetic test results?

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  Can you refer me to a genetics expert?

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  Is my insurance company likely to cover the cost of genetic testing?

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  Are there programs to help cover the costs for genetic testing?

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  How will my results affect my ability to get health insurance, life insurance, disability insurance or long term-care insurance?

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  If I don't know my family medical history, can I still get genetic testing?

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  Which gene mutations will you be testing me for?

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  I had testing through an ancestry company, do I need additional genetic testing?

The following is an overview of the steps to undergo genetic testing for an inherited mutation linked to cancer.

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  Step 1: Gather your family health history. Genetic testing is most informative for you and your family if you can gather as much information about the health and history of cancer in your family.

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  Step 2: Speak with a genetics expert. (See the tips in the next section for more details about why and how to find a genetics expert).

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  Step 3: Once your test is ordered, a saliva or blood sample will be sent to the lab for genetic testing.

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  Step 4: You should receive your results in 2-6 weeks. Quicker testing may be available for people who need results sooner in order to make treatment decisions.

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  Step 5: Speak with a genetics expert for post-test counseling. They will explain what your results mean for you and your family and outline your medical options.

Most expert guidelines recommend speaking with a genetics expert before undergoing genetic testing, a process known as genetic counseling. Genetic counseling can reduce the uncertainty about whether you should have testing, which test to order and what the test results mean for you and your family. Below are tips to help you move forward with genetic counseling and testing and determine next steps once you receive your results.

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  If you are undecided about genetic testing, a genetics expert will provide the facts you need to make an informed decision. They will consider your situation and preferences and help you pursue the path you decide is best.

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  If genetic testing has been recommended but you have decided not to pursue it, a genetics expert can help ensure that your decision is based on facts and in your best interest.

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  If you decide that you want genetic testing, a genetics expert will evaluate your personal and family history, order the appropriate test, help to obtain insurance coverage or help find low-cost testing.

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  Ask your doctor for a referral to a genetics expert or use the National Society of Genetic Counselors tool at: FindaGeneticCounselor.org to locate an expert near you or one who can provide services by telemedicine.

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  If you need assistance finding a genetics expert in your area, FORCE can help. Reach out to info@facingourrisk.org.

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  After testing, a genetics expert will explain the meaning of your results and your medical options.

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  Many genes associated with hereditary cancer have expert guidelines for treating cancer or managing risk. If you test positive for a mutation, it's important to know the guidelines for your gene. Visit bit.ly/force-genes for gene-based guidelines.

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  Blood relatives, even distant ones, may share the same mutation that runs in a family. It is important to communicate with as many relatives as you can about cancer in the family. Visit FORCE's page on sharing information with relatives: bit.ly/force-family-sharing.

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  Most private health insurers cover genetic counseling and testing with low or no out-of-pocket costs for people who meet national guidelines for testing.

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  If your health plan does not cover the full cost of testing, or you do not have health insurance, you may be able to receive testing from a reputable lab for $300 or less.

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  Many laboratories and some nonprofit organizations offer financial assistance or low-cost testing options for people experiencing financial hardship. Visit: https://bit.ly/force-paying-for-testing for more information.

If you had genetic testing in the past and any of the following applies, talk to your doctor about additional genetic counseling and testing. Genetic testing has improved over the years and labs are able to find mutations that were previously missed through older testing methods.

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  You had limited genetic testing in the past with a test that only looked for one or a few genes and your results were negative.

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  You had genetic testing through an ancestry company, which included testing for inherited cancer risk.

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  You had genetic testing before 2014 and your results were negative.

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  There have been new cancers diagnosed in your family that are not explained by earlier genetic test results, even if you or another family member previously tested positive for a mutation. In these cases, updated genetic counseling and testing may help determine whether another inherited mutation could be involved.

Here are additional resources that can help you better understand genetic testing, make decisions and find support.

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  National Society of Genetic Counselors Find a Counselor Lookup Tool: https://findageneticcounselor.nsgc.org/

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  FORCE Peer Navigation Program: https://bit.ly/force-pnp

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  FORCE Information on Signs of an Inherited Mutation: https://bit.ly/force-signs-of-a-mutation

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  FORCE Information: Genes Associated with Inherited Cancer Risk: https://bit.ly/force-genes

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  FORCE Information: Hereditary Cancers: https://bit.ly/force-cancers

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  FORCE Ask-a-Genetic-Counselor Helpline: (866) 288-RISK (7475), extension 704

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  Dana-Farber Cancer Institute's PREMMplus Risk Calculator: https://premm.dfci.harvard.edu/screener/premmplus