The stress of rare cancers in the United States
Patients diagnosed with rare cancers may have difficulty finding a physician knowledgeable in treating their type of cancer and may increase your risk of being misdiagnosed. Treatment options may be more limited, because fewer clinical research studies focus on rare types of cancer.
A recent study found that one in five cancers diagnosed in the U.S. is a rare cancer, which means a type of cancer diagnosed in less than 6 people per 100,000 people a year.
You can get a list of the leading cancer treatment programs on the National Comprehensive Cancer Network’s site,as well as from the National Cancer Institute. These specialists stay up-to-date on the latest diagnostic tools and treatment options for rare cancers, including clinical trials. Specialists with experience diagnosing and treating rare types of cancer usually practice at larger academic medical centers.
Ask what types of evidence-based treatments are available for the cancer you’ve been diagnosed with, including clinical trials and orphan drugs.
Ask your your physician about which treatment he or she would recommend and why and if the goal is to cure the disease, achieve remission, or relieve symptoms caused by the cancer, such as pain.
Be your own Health Advocate, don’t be afraid to ask questions.