Which Experts Do You Need?

Finding Expert Care

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

Cancer screening and prevention

If you have an inherited mutation linked to cancer your options for managing cancer risk may be different than the options for people of average risk. It's important to receive your care from experts who follow the risk-management guidelines and have experience caring for high-risk people. Many cancer centers have screening and prevention centers specifically for people at high risk. These centers may include a medical or surgical oncologist. Depending on your cancer risk, your screening and prevention may involve the following experts:

• Gynecologist: Ensure your gynecologist is aware of recommended risk-management guidelines and special protocols for risk-reducing surgery. Some high-risk people receive preventive care from a gynecologic oncologist rather than an 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. 
• Breast surgeon: Even if you are not planning surgery, a breast surgeon is often the best expert to examine your breasts for changes, order your high-risk breast screening and discuss your screening results. 
• Dermatologist: Find a dermatologist with expertise in screening for melanoma.
• Ophthalmologist: If you are at high risk for melanoma, you may need to see an ophthalmologist who can screen for melanoma in your eyes. 
• Gastroenterologist: 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, ask whether they have 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, ask if your urologist regularly sees high-risk patients and is familiar with screening recommendations.

Breast reconstruction surgeon 

Many plastic surgeons specialize in one type of reconstruction (e.g., tissue flap vs implant). It is helpful to understand all your reconstruction options and choose the one that is right for you before you select a plastic surgeon. You may need to interview several surgeons to find the best fit. The Complete Guide to Breast Reconstruction describes all options and includes tips for finding a reconstructive surgeon.  

Fertility

If you are diagnosed with cancer in your reproductive years or you are considering steps to lower your cancer risk that will impair your fertility, you should request a 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. Read more in our section on Fertility and Family Planning. 

Menopause

Treatment or prevention of breast, endometrial, fallopian tube or ovarian cancer may lead to early-onset menopause or menopause-like symptoms. The 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 therapy

If your treatment or prevention involves surgery, a physical therapist can help you regain 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 retention, known as lymphedema. The Lymphatic Education & Resource Network has tips and tools for finding lymphedema experts. 

Mental health 

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. 

Tips for finding hereditary cancer experts

• Check if the provider is in-network for your health plan. If your insurance plan network has no provider with the training or experience you need, contact your insurer to determine the next steps. Some plans pay in-network fees to cover the cost of an out-of-network specialist, but this may require prior approval. Your doctor's office may be able to help with the process if you need to submit a formal appeal to your insurer.
• Find the best experts for your situation. 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:
  • Ask 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 referrals from trusted healthcare professionals, 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, even if you have already received your test results. Recommendations for cancer screening, prevention and treatment are constantly changing. Having a genetics expert with whom you can consult regularly 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.