Decision Checklists & Tip Sheets

If you or a close blood relative has been diagnosed with any of the situations listed below, go to the section on "How to get tested" for information about next steps.

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  Triple-negative breast cancer at any age

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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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  Metastatic prostate cancer at any age

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  Male breast cancer at any age

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  A type of stomach cancer known as diffuse gastric cancer

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  Any rare cancer or childhood cancer

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  Colorectal or endometrial cancer at age 50 or younger

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  Prostate cancer at age 55 or younger

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  Breast cancer at age 65 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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  3 or more melanomas

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  Multiple relatives on the same side of the family with cancer

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 experts. (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 [email protected].

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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.

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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.

Genetic testing has improved over the years and labs are able to find mutations that were previously missed through older testing methods. If you had genetic testing in the past, you may benefit from additional genetic counseling and testing in the following situations.

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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 before 2014 and your results were negative.

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  There have been new cancers diagnosed 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. In these cases, updated genetic counseling and testing may help determine whether another inherited mutation could be involved.

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

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

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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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  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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  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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  How long will it take to get genetic test results?

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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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  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?