Making medical decisions about hereditary cancer

If you have been diagnosed with cancer, you have cancer in your family or you have tested positive for an inherited mutation linked to cancer, you face important and challenging decisions that may affect all facets and phases of your life, including:

• whether or not to have genetic testing
• how to discuss health history and genetic testing results with your family
• the best options for cancer screening and prevention
• the best options for cancer treatment
• family planning and reproductive decisions

Tips to help you to gain clarity in your decisions

As you explore your medical options, consider the following:

• Are there guidelines for making these decisions, and if so, what do they recommend? It's important to have the most accurate and up to date information on standard-of-care for each decision you make. To help, we provide the most relevant guidelines for each topic on this website. In some cases, these guidelines are clear and backed by research. In other cases, you may find multiple options, no ideal options, gaps in knowledge or that experts may not agree.
• What are all my options? Do I qualify for a research study? Even when guidelines exist, you may have more than one option. Try to learn about the benefits, risks, limitations and costs of each one. Our website lists the different options, including relevant clinical trials for each topic—it's worthwhile to explore your options for participation in one or more clinical trials, as your doctors may not be aware of research that is conducted outside of their own facility. 
• What is the best timing for my decision? Some decisions are time-sensitive and may require immediate action. For example, surgery to remove a tumor may make you ineligible for neoadjuvant treatment. Having genetic testing at the time of a cancer diagnosis may help you make decisions about surgery. Others may have more flexible timing. You may opt for screening if you are not certain about having risk-reducing surgery. 
• Who are the most knowledgeable experts for this situation? Many areas of cancer and genetics are advancing rapidly, and not all healthcare professionals are equally knowledgeable or experienced on all related topics. Consider whether or not your current healthcare team has the right expertise for your decisions. Ask your doctors about how many patients with your exact circumstances they have treated. Try to get multiple opinions. If your situation is rare, seek out referrals to top experts from friends, peers or other healthcare professionals.
• Talk to your peers. It can be helpful to speak with other people who have faced similar circumstances and decisions. You will find options for peer support for each topic on this website. Additionally, getting input from friends and relatives who know you, your preferences and your priorities can be helpful, even if they do not share your exact circumstances.
• Am I feeling emotional distress? If the decisions you need to make cause you more anxiety then you can deal with alone, consider asking for a referral to a behavioral healthcare professional.