People diagnosed with prevalent cancers, such as breast or prostate cancer, find it easy to find information about their disease and to receive care from experienced medical professionals. However, for the thousands of individuals with rare forms of cancer, things are a bit more complicated.

There are almost 7,000 rare diseases, including many types of cancer. A disease is considered rare if fewer than 40,000 people in the U.S. are diagnosed each year, or the disease affects fewer than 200,000. Experts estimate that 25 million Americans have a rare disease.

Rare Cancers

Our body is comprised of hundreds of intricate and complex organs and tissues and they are all fair game when it comes to developing cancer. Many cancers considered rare, such as brain and ovarian cancer, still affect about 18,000 to 25,000 Americans each year. Others strike even less frequently. About 2,000 Americans are diagnosed annually with mesothelioma, a rare cancer caused by asbestos exposure. Psuedomyxoma peritonei, a cancer of the appendix, only affects one out of a million people. And only 52 people each year, on average, develop cancer of the pituitary gland.

Coping with Rare Cancers

So, what should you do if you have a rare type of cancer?

Do your research. Thanks to the Internet, there are many online sources of information. The National Organization for Rare Disorders (NORD) has an index of rare diseases, and the Association of Cancer Online Research links to websites with details about each type of cancer. Medline and PubMed are databases where you can find almost any published scientific studies.

Connect with others. Sharing experiences and learning from others with the same cancer can make you feel less isolated and help you uncover resources and coping tips you might not otherwise find. Join the Rare Cancer Alliance listserves, for example, or track down a local or online support group.

Find an oncologist who's treated your specific cancer. Seek treatment at a comprehensive cancer center, such as MD Anderson or Duke, where you're more likely to find specialists on rare cancers. As you uncover relevant research studies, you'll learn who is an expert in your type of cancer and where he or she practices.

Explore clinical trials. There are hundreds of clinical trials for cancer prevention, diagnosis techniques, or new treatment options. See if there are studies offering clinical trials for your cancer. If you qualify to participate in a clinical trial, you may have access to treatment options not yet available to the general public. You can find a list of clinical trials at


National Institutes of Health. National Institutes of Health Office of Rare Disease Research. "Research & Clinical Trials." Web.

National Organization for Rare Diseases (NORD). Web.

Rare Cancer Alliance. Web.

National Institutes of Health. National Institute of Health Office of Rare Disease Research. "Rare Diseases." Web.

Dunn, Steve. "Some Advice on Dealing With a Rare Cancer." Cancer Guide. Web. 24 January 2004.

"Exploring Rare Cancers." Duke Comprehensive Cancer Center. Web.

Association of Cancer Online Resources. Web.