Rare Cancers
I felt so alone, but CancerCare’s support group for people with cancer helped me meet others coping with a rare cancer.
My doctor has never treated anyone with my diagnosis, so my CancerCare social worker is helping me find accurate information to share with my health care team.
In the United States, “rare cancers” refers to any cancer that affects less than 200,000 people. There are about 298,400,000 people in this country. That means that a cancer is considered rare if it affects less than seven out of every 10,000 people.
Those are the statistics. But if you are coping with a rare cancer, you know the reality. Having a rare cancer can make you feel alone, as it can be hard to find someone else with the same diagnosis. It’s also likely that your doctors have never treated anyone with your cancer before, which can be scary and unsettling. In addition, there is not a lot of research into rare cancers. You may be upset to find that so little is known about your diagnosis. You may also have to spend extra time searching for information on your treatment options.
CancerCare can provide you with free, professional services to help you. Here is a sampling of what CancerCare can do for you.
- CancerCare Counseling™: Talk to a professional experienced in helping people cope with the unique challenges of having a rare cancer. We offer free counseling for people with cancer, caregivers, family members and loved ones. You can speak one-on-one with an oncology social worker, or join one of our professionally led support groups:
- CancerCare Connect®: Take advantage of our free educational programs. Our Telephone Education Workshops and Connect booklets provide valuable information on coping with cancer and managing side effects.
- CancerCare Inform®: Our Reading Room provides a wealth of information to help you in your journey. Topics include talking with your doctor, managing side effects, caring for the caregiver, and much more.
- CancerCare Assist®: Cancer can place a tremendous strain on your finances. We can help you locate local and national resources that provide financial help. We also offer limited grants to help with cancer-related costs such as transportation and child care. Learn more.
Other resources you might find helpful:
National Organization for Rare Disorders (www.rarediseases.org) – Offers education, advocacy and research for the identification, treatment and cure of rare disorders.
National Institute of Health’s Office of Rare Diseases (www.rarediseases.info.nih.gov) – Provides research information and links to helpful resources.
Rare Cancer Alliance (www.rare-cancer.org) – Provides information and online support to all childhood and adult rare cancer patients.
Sponsors
This web page has been made possible by an educational grant from Pfizer Oncology.
