Finding Treatment and Information for Rare Cancers
Cancer is a life-changing experience for anyone. It can be even more challenging if you’re diagnosed with a rare form of cancer. A rare cancer is one that affects fewer than 40,000 people per year in the U.S. Because these cancers are rare, it might be harder to find information about them. It could also be hard to find a healthcare provider with experience treating them. This can be frustrating. But know that help is available—it just might take some extra searching.
Here are some ideas for next steps after you receive a rare cancer diagnosis.
Get a second opinion
Rare cancers are harder to diagnose than others. So getting a second opinion from another healthcare provider might be a good idea. Making sure your diagnosis is correct is important overall. But it can help you find the right specialist, too.
Find a specialist
Your specialist will likely be an oncologist. These are doctors who treat cancer. Finding the right specialist might take a little longer than finding a general healthcare provider. But you’re not alone in your search. Here are some ways to start looking:
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Ask your primary care provider. Your current healthcare team can help find a specialist. They might have recommendations or be able to refer you to someone.
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Research specialized cancer centers. There are cancer centers and academic medical centers throughout the country. Many dedicated programs or clinics focus on rare cancers. Search “cancer centers that treat rare cancer” online. When you find one, call them to see if they can help you.
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Check out national organizations. Trusted organizations have resources and tools on their websites to help you find a specialist or treatment center. Some to check out include the National Cancer Institute (NCI), the American Cancer Society (ACS), the Rare Cancer Alliance (RCA), and the National Comprehensive Cancer Network (NCCN) Patient Resources.
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Ask others for recommendations. Online forums, social media groups, and local support groups for people with rare cancers can be valuable resources. They could even help you find specialists. Track down these groups by searching the name of your cancer on a social media platform or on online forums.
When you find a specialist, ask them questions to see if they have experience with the cancer you have. Sample questions include:
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How often have you seen my exact diagnosis?
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How many people have you treated with it?
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Do you have any specialized training or research experience with the cancer that I have?
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How experienced is the rest of your team with this type of cancer?
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What’s new in the treatment of this disease?
Learn about your cancer
Research and understand:
Search for your cancer on websites such as:
These organizations have trustworthy, in-depth information about all kinds of rare cancers. Learning more will help you make informed decisions about your care.
Gather your medical records
Collect all your medical records that have to do with your cancer, including:
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Test results
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Imaging studies
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Biopsy reports
You’ll likely be asked to share your medical records with various providers. Keeping them organized and on-hand will make that easier.
Build a support system
Create a support network of friends and family to help you cope. They can help emotionally and with everyday tasks. You might need rides to your appointments or help with cooking. Or you might need a listening ear on hard days. Like your healthcare team, your friends and family are there to support you during this time.
Connect with organizations
Many rare cancer patient advocacy groups and support organizations offer valuable resources, including:
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Access to the latest research
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Information on clinical trials
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Regular meetups (online or virtual) with other people with the same kind of cancer you have
Consider clinical trials
Clinical trials are research studies that look at the safety and effectiveness of new treatments. Ask your healthcare team about any clinical trials you might qualify for. You can also find information at ClinicalTrials.gov.
Communicate with your healthcare team
Talk often with your healthcare team to make sure you get the best care and support. Let them know:
Take care of your mental health
A cancer diagnosis can be overwhelming and scary. Consider talking with a counselor or finding a support group. Ask your healthcare team to help you find these services or search for them online. They can be in-person meetings or virtual ones, depending on what you’re comfortable with. Know that there is no right or wrong way to feel—and there are others who have felt the same things you’re feeling. They are ready to listen and help.