Hereditary Cancer and Genetic Testing

Finding expert care

Genetic test results often come with a series of recommendations for cancer treatment, prevention and follow-up care. These recommendations may require you to seek advice from specialists. The following tips will help you assemble a team who can provide you with the best possible care. 

  • Check if the provider is in-network for your health plan: Some specialists may not be included in your network. If your insurance plan network has no provider with the training or experience you need, contact your insurer to determine next steps. Some plans will pay in-network fees to cover the cost of an out-of-network specialist, but this may require prior approval. If you need to submit a formal appeal to your insurer, the billing contact in your primary care provider's office may be able to help you with the process.
  • Find the most knowledgeable experts for your situation now and in the future: Many areas of cancer and genetics are advancing rapidly, and not all health care professionals have equal experience on a given topic. Consider the following when choosing healthcare professionals for your team:
    • Do they have the knowledge and expertise to manage someone in your situation? Ask them how many people with your inherited mutation or medical condition they have cared for. 
    • Do they have the right equipment or protocols for managing people in your situation?
    • Seek out referrals from trusted healthcare professions, peers and family who understand or share your situation.
  • Find a primary care provider who knows your situation: Your primary care provider doesn't need to be a specialist to advocate for your care. Some health plans will not cover specialty care without a referral from a primary care provider. 
  • Be sure to include a genetics expert on your team: Whether you are considering genetic testing or you have already received your results, it is important to include a genetics expert as part of your healthcare team. Cancer genetics is a rapidly changing area of medicine, and recommendations for cancer screening, prevention and treatment are constantly changing. Having a genetic counselor with whom you can consult on a regular basis will help you make any necessary adjustments to your medical routine as new information emerges. Visit our page on genetic counseling to find a genetics specialist.


Which experts do you need?

Depending on your situation, you may also benefit by including experts in the following areas:

  • Cancer screening and prevention: People with an inherited mutation linked to cancer have options for managing their increased cancer risk that are different than screening and prevention options for people in the general population. It's important to be screened and followed by healthcare professionals who know the risk-management guidelines and have expertise caring for high-risk people. Ask what the plan will be if your screening finds an abnormality. Many academic institutions and cancer centers have screening and prevention centers specifically for people at high risk for cancer. These centers may include a medical or surgical oncologist on staff. Depending on your cancer risk, your screening and prevention may involve the following:
    • Gynecologist: Make sure that your gynecologist is aware of risk-management guidelines and any special protocols that should be followed for risk-reducing surgery. Some women have risk-reducing salpingo-oophorectomy or hysterectomy performed by a gynecologic oncologist, rather than on obstetrician-gynecologist. 
    • Breast imaging center: Make certain that your breast imaging center uses 3D mammograms (tomosynthesis), and ask if they have the equipment for MRI-guided breast biopsies. 
    • Dermatologist: Find a dermatologist with expertise at screening for melanoma.
    • Ophthalmologist: If you learn that you are at high risk for melanoma, you may need to see an ophthalmologist who can screen for melanoma in your eyes. 
    • Gastroenterologist: You can ask your gastroenterologist how many patients with your mutation they care for, and what screening guidelines they follow. If your gastroenterologist is not part of an established high-risk cancer prevention program, you may also ask whether they have any connections to research registries or other research studies for patients like you.
    • Urologist: Ideally, experts recommend that men at high risk for prostate cancer receive their screening from a high-risk specialty center. If you do not have access to a high-risk screening center, find out if your urologist regularly sees high-risk patients and if they are familiar with screening recommendations.
  • Breast reconstruction surgeon: Many plastic surgeons specialize in one type of reconstruction over another (e.g., tissue flap vs. implant). It is helpful to learn about all your reconstruction options and choose the one that is right for you before you select a plastic surgeon. You may have to interview several different surgeons to find the best fit. The Breast Reconstruction Guidebook includes tips for finding a reconstructive surgeon. 
  • Fertility expert: If you are in your reproductive years and have been diagnosed with cancer, or you are considering steps to lower your cancer risk that will interfere with your fertility, you should request referral to a fertility expert. The Oncofertility Consortium maintains a national database of healthcare providers with expertise in fertility preservation and treatment of people who are diagnosed with cancer or at high risk for cancer due to an inherited mutation. You can read more in our section on Fertility and Family Planning
  • Menopause expert: Treatment or prevention for breast, fallopian tube and ovarian cancer may lead to early-onset menopause or menopause-like symptoms or side effects. The North American Menopause Society is an organization of menopause experts. Their website provides a tool to help you find a qualified menopause expert in your area. 
  • Physical therapist: If your treatment or prevention involves surgery, a physical therapist can help you regain your mobility. (Your insurance may require a referral for this.) The American Physical Therapy Association's ChoosePT.com website helps you to search for a physical therapist in your area. Some surgeries that remove lymph nodes or disrupt lymph vessels can lead to swelling and fluid collection known as lymphedema. The Lymphatic Education & Resource Network has tips and tools for finding lymphedema experts
  • Behavioral health expert: Navigating hereditary cancer can be physically and emotionally challenging. Having an established relationship with a behavioral health expert can help you work through particularly stressful or challenging situations. Many cancer centers employ social workers, palliative care specialists or other behavioral health experts. 
Last updated September 28, 2020