Rare Types of Cancer: What to Know if You’ve Been Diagnosed

According to the National Cancer Institute (NCI), rare cancers make up about 25% of all cancers. A cancer is considered rare if it affects fewer than 40,000 people per year in the United States.

If you have a rare type of cancer, you may face extra challenges. Rare cancers can be difficult for a few reasons:

• It may take longer for doctors to diagnose a rare cancer.
• You may have fewer treatment options than people with a more common cancer.
• There are fewer specialists for rare types of cancer. You may have to travel farther for treatment.

How can I advocate for myself if I have a rare cancer?

• Learn about your cancer. Follow these tips for finding accurate information online. This information comes from trusted sources:
  • About Rare Cancers (National Cancer Institute)
  • List of Rare Cancers (National Institutes of Health Genetic and Rare Diseases Information Center)
  • Rare Disease Database (National Organization for Rare Disorders)
• Be an active member of your care team:
  • Ask questions and take notes during appointments.
  • Speak up when you don’t understand something.
  • Tell your care team if you have a new symptom or side effect.
  • Ask your care team to connect you with resources about your cancer type.

How can Huntsman Cancer Institute help if I have a rare cancer?

Know that you are not alone. Huntsman Cancer Institute has people and resources to help.

As an NCI-designated Comprehensive Cancer Center, Huntsman Cancer Institute has experts that may not be available at other hospitals in the region. Many of our doctors have experience treating rare cancers.

Huntsman Cancer Institute also has cancer information specialists in the Cancer Learning Center (CLC) who can help you find reliable and helpful information. The CLC is a free service available to anyone with a cancer question. You don’t need an appointment to talk with a cancer information specialist.

Our cancer information specialists are trained to find information you may not discover through a simple internet search. They can answer questions about the type of rare cancer you have. They can refer you to websites, organizations, or support groups. They can also help you understand information and come up with questions to ask your providers.

Contact the Cancer Learning Center:

• Call toll-free at 1-888-424-2100.
• Email cancerinfo@hci.utah.edu.
• Text 801-528-1112.
• Do a live chat.