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For Individuals Diagnosed With a Rare Cancer

Today's guest blog post comes from CancerCare Social Worker, Mary Hanley, LMSW. Mary shares her experience helping individuals with rare cancers.

alt text One in five people diagnosed with cancer are considered to have a rare form of the disease. If you are someone facing a rare cancer diagnosis, here are some ways to help cope.

The Challenges Individuals Face When Diagnosed with a Rare Cancer

In 2018, the National Cancer Institute estimates there will be over 1.7 million new cases of cancer diagnosed. Some cancer diagnoses are so common that they have entire months dedicated to researching their cure and advocating for those affected. For those who are diagnosed with a rare cancer, defined as less than 15 cases per 100,000 people, the cancer journey can be uniquely confusing, frustrating and isolating.

Some individuals with rare cancer diagnoses who call the CancerCare Hopeline state that they don’t know how to explain their cancer to loved ones. Not being able to articulate their diagnosis can make an individual feel misunderstood. They may feel that their loved ones do not understand how to support them, practically and emotionally.

Doctor’s appointments can also be overwhelming. With rare cancers, extensive testing and possibly misdiagnoses can affect treatment. Not being able to find someone who has been in your situation or relate to your experience can make having a rare cancer feel scary. It may feel like there’s no one that can help you through this process, and finding resources may not be as simple as for breast or prostate cancer. Here are a few ideas that can make this process a little easier.

Your Health Care Team: How They Can Help You

See a doctor that specializes in your rare cancer. Even with more common cancers, it’s a good idea to seek treatment or get a second opinion from an oncologist who specializes in your type of cancer. There may be a specialist who is knowledgeable about what treatment will work best for your diagnosis and can help you. To find a specialist, ask your doctor for a referral. You can also check visit the National Cancer Institute website which has a database of specialists.

Ask your health care team about clinical trials. Clinical trials may provide an opportunity for an individual to access the latest in treatment in cancer care. You may also gain access to new treatment methods. There are a number of services available that can help match you to a clinical trial including, About Clinical Trials, and EmergingMed.

Talk to your health care team about how you can better engage your loved ones. Don’t be afraid to tell your oncologist, nurse, or anyone else on your medical team that you are having trouble communicating your diagnosis to others. Remember, you are a consumer of services, and you should not hesitate to ask your health care team for more information or clarity. If you have someone who acts as your primary caregiver, have them come with you on one of your doctor’s visits.

Practical Ways to Better Cope With a Rare Cancer

Find resources near you. Non-profits, charities, and treatment centers in your area can help to bridge the gap in financial, physical or medical needs. CancerCare’s Online Helping Hand ( is a search engine that can help you find these organizations based on your cancer type and location.

You are not alone: support is available to you. It may not feel like it, but 20% cancer patients are diagnosed with a rare cancer. Emotional support helps treat the whole person. Many cancer treatment centers have a social worker on staff that can navigate your emotional needs and connect to resources.

CancerCare also has oncology social workers on staff that can provide counseling both in person (NYC, Long Island, and New Jersey) and over the telephone. If you’re interested in pursuing counseling through CancerCare, give us a call at (800) 813-HOPE (4673).

Learn more about CancerCare’s resources for rare cancers.

Posted by Guest Blogger on November 14, 2018 in Coping and Support, Guest Bloggers

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