I've Tested Positive, Now What?
How to get genetic testing
If you are thinking about genetic testing and wondering how to proceed, the following steps can help you make an informed decision and move forward with your plan.
- Know the signs of an inherited mutation
- Speak with a healthcare professional with expertise in cancer genetics
- Read the expert guidelines
- Consider your personal situation
- Speak with your peers
- Learn about your family's medical history
- Don't go it alone
- Consider low-cost testing options if insurance won't cover it
Speak with a genetics professional
Genetic testing can provide important, life-saving information. Seeing a genetics expert can alleviate much of the uncertainty about whether you should have testing, which test to order, and what the test results mean for you and your family. This is the most reliable way to obtain up-to-date information and to formulate a plan.
- If you are certain that you want to proceed with genetic testing, your best next step is to speak with a genetic counselor, who will make sure that the proper test is ordered, help to obtain insurance coverage for the test, limit out-of-pocket costs and also make sure that your results are interpreted correctly. A genetic counselor won’t try to talk you out of testing, but will guide you through the process.
- If you are undecided about genetic testing, speaking with a genetics expert can provide you with the facts, so that you can make an informed decision. A counselor will consider your personal situation and personal preferences, supporting your efforts to pursue the decision that is right for you.
- If a doctor or a relative has recommended that you have genetic testing, but you have already decided not to pursue it, a genetic counselor can determine whether your decision is based on facts and in your best interest. A genetics expert will not try to talk you into testing, but will support the decision that you feel is right for you.
Genetic counselors will not try to change your mind about testing, but they will make sure that you receive balanced information on which to base your decision. Genetic testing is a personal choice, but it's your choice.
Ask your doctor for a referral to a genetics expert. If no expert is available in your area or if appointment wait times are too long, consider contacting one of the providers listed here, who can provide genetic counseling by telephone.
Read the expert guidelines for testing
The National Comprehensive Cancer Network (NCCN), an organization of top cancer experts, develops and regularly updates guidelines regarding who should consider genetic testing. However, not all doctors are aware of or follow these guidelines. Adding to the confusion, common myths about and genetic testing are often shared widely. For these reasons, it's worthwhile to educate yourself on what the experts say about testing.
Even if you don't think you meet the guidelines, you can still be tested. The most important next step is to speak with an expert in cancer genetics.
Consider your personal situation
Your personal situation can affect how and when you proceed with genetic testing.
- If you are newly diagnosed with cancer or a recurrence, genetic testing may affect your treatment decisions. For each cancer listed, we provide a separate section on the benefits of testing for people diagnosed and a section on how test results may affect treatment options.
- If you have completed treatment for cancer, genetic testing may help you understand your risk for a new cancer diagnosis and influence your decisions about cancer screening and prevention.
- If you have never been diagnoosed with cancer, genetic testing can clarify your risk to help you make decisions about cancer screening and prevention.
In all cases, testing can provide your relatives with information about their risk for cancer and options for managing that risk.
Learn about the cancer in your family
If you are considering genetic testing, learning about your family medical history can help you and your healthcare team determine whether genetic testing is likely to be of benefit and which test might be best for you.
- Find out whether any of your relatives have already had genetic testing. If any of your biological relatives have tested positive for an inherited mutation, it's important to ask them to share their genetic testing laboratory report and any family medical history that they can provide
- If you are the first to undergo genetic testing in your family, you may have to collect your family medical history starting from scratch. Try to assemble information about close relatives who were diagnosed with cancer, the type of cancer they had, and their age at diagnosis. It is best to have this information at the time of your genetic counseling appointment. Pass on this information to any relatives who also decide to pursue genetic testing.
Talk to people who have had testing
It can be reassuring to speak with and get support from other people who have had genetic testing to hear about their experiences. FORCE has many programs to connect you with peers and trained volunteers who understand your situation and the decisions you are facing. You may want to speak with relatives who know you, your preferences and your priorities to gain additional insights.
Don't go it alone
Increasingly, testing for an inherited mutation is available outside of the healthcare setting, without genetic counseling, and in some cases, without a doctor. Even though you may be tempted to the go the "Do It Yourself" route, we recommend that you begin by speaking with an expert in cancer genetics.
FORCE offers many peer support programs for people with inherited mutations.
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Our moderated, private Facebook group allows you to connect with other community members 24/7.
- Check out our virtual and in-person support meeting calendar.
- Join one of our Zoom community group meetings.
Below are clinical trials that include genetic counseling and testing.
- NCT02665195: Registry Of MultiPlex Testing (PROMPT). PROMPT is an online research registry. The goal of PROMPT is to help researchers to better understand the risks that are linked to mutations in less well-studied genes.
- NCT04245176: Genetic Testing for All Breast Cancer Patients (GET FACTS). This study looks at the impact of a novel genetic counseling method on surgical decisions in people with newly diagnosed breast cancer. This study involves genetic counseling about risk.
- NCT02620852: WISDOM Study: Women Informed to Screen Depending on Measures of Risk offers women age 40-74 the opportunity to undergo risk assessment and genetic testing in order to determine the best breast screening options based on their situation.
- Enhancing Genetic Risk Assessment in Underserved Blacks and Latinas at Risk of Hereditary Breast Cancer. This study will test how well educational materials increase the use of knowledge about risk.
- NCT04476654: Improving Uptake of Genetic Cancer Risk Assessment in African American Women-Video. This study looks at the usefulness of intervention with a culturally-tailored video to improve uptake of genetic counseling in Black women who are at increased risk of .
Other genetic counseling or testing studies may be found here.