Decision Checklists & Tip Sheets
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Checklist: Genetic Testing for People Who Have Been Diagnosed with Cancer
Genetic testing for an inherited mutation is a laboratory test that can be performed on saliva, blood or tissue. Genetic testing can benefit people diagnosed with cancer at any point in their care—whether newly diagnosed, in treatment, or years beyond treatment. Test results help guide surgical decisions, treatment options, and access to newer therapies.
Even after treatment ends, your genetic test results can help you and your relatives better understand cancer risk, take steps to stay healthy, and learn whether family members may have an increased or average risk of developing cancer and take steps to stay healthy.
See the topics below for more details.
Genetic testing to help the newly diagnosed or those making treatment decisions
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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Questions to ask your doctor for the newly diagnosed or those making treatment decisions
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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Genetic testing for cancer survivors, including people who have completed treatment
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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Questions to ask your doctor for cancer survivors, including people who have completed treatment
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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Additional Information
Steps for genetic testing
- 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.
- Speak with a genetics expert.
- If you are undecided about genetic testing, a genetics expert can answer your questions and help you make an informed decision based on your personal situation and preferences.
- 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.
- If you know you would like to pursue 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.
- Once your test is ordered, a saliva or blood sample will be sent to the lab for genetic testing.
- 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.
- Speak with a genetics expert after genetic testing for post-test counseling. They will explain what your results mean for you and your family and outline your medical options.
Insurance coverage and paying for genetic testing
- 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.
- 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 $350 or less.
- 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-testingfor more information.
Next steps for people who test positive for a mutation
- After testing, a genetics expert will explain the meaning of your results and your medical options.
- 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.
- 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.
Resources
- National Society of Genetic Counselors Find a Counselor Lookup Tool: https://bit.ly/find-a-gc-tool
- FORCE Peer Navigation Program: https://bit.ly/force-pnp
- FORCE Information on Signs of an Inherited Mutation: https://bit.ly/force-signs-of-a-mutation
- FORCE Information: Genes Associated with Inherited Cancer Risk: https://bit.ly/force-genes
- FORCE Ask-a-Genetic-Counselor Helpline: (866) 288-RISK (7475), extension 704
- Dana-Farber Cancer Institute's PREMMplus Risk Calculator: https://bit.ly/dfci-premmplus
Types of documents you can create:
Decision Checklists
When making medical decisions, it’s important to gather reliable information from your healthcare team. Asking questions and discussing benefits and risks with your healthcare team can help you choose the options that align with your values, lifestyle, and long-term goals.
Tip Sheets
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Additional Resources
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