Finding experts

A cancer diagnosis, family history or genetic test result often come with a series of recommendations for treatment, prevention or follow-up care. These recommendations may require you to seek advice from specialists.

Which experts do you need?

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

• Genetic counselor
• Behavioral health expert
• Breast expert 
• Breast reconstruction surgeon
• Dermatologist 
• Fertility expert
• Gastroenterologist
• Gynecologic oncologist 
• Lymphedema expert
• Menopause expert
• Ophthalmologist
• Physical therapist
• Surgeon
• Urologist

Finding a Comprehensive Cancer Center

Comprehensive cancer centers offer multiple services, clinical trials and specialists within the same facility or hospital system. These centers provide patients with access to a large number of experts, simplifying the referral process. 

• National Cancer Institute (NCI)-Designated Cancer Centers deliver cutting-edge cancer treatments to patients in communities across the United States. 
• National Comprehensive Cancer Network (NCCN) member institutions represent the nation's top cancer centers. NCCN centers are at the forefront of cancer diagnosis, treatment, supportive care and ground-breaking research.
• The Commission on Cancer (CoC) is a consortium of professional organizations that set standards for cancer care. They provide accreditation to centers that meet their standards. You can search for accredited centers through their website. 

Tips for finding experts 

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. 
• Register for the FORCE Message Boards to get referrals from other members. Once you register, you can post on the Find a Specialist board to connect with other people who share your situation.