Living with cancer blog

Living in unknown territory: Rare cancers

By Sheryl M. Ness, R.N. March 9, 2013

If you're diagnosed with a rare or unusual cancer, it's not easy to figure out how you fit in to the mainstream of cancer care.

Hearing that you've been diagnosed with cancer is hard enough, but when your doctor tells you that your cancer's rare, it's not easy to feel comfortable about your next steps.

You may find that doctors, nurses and other cancer patients have never heard of your type of cancer. It may be difficult to find information and resources to guide your treatment choices. This is when it's important to ask questions and take steps to find a cancer specialist who understands your cancer type and others who can help support you along the way.

Here are a few ideas on what you can do:

  • Ask your doctor for a referral to an NCI-designated Cancer Center where it's more likely that they've had experience with your cancer type. If this isn't offered to you — do your research and ask for help from others. NCI has excellent resources and a listing of NCI-designated Cancer Centers on its website or call 1-800-4CANCER.
  • Seek a second opinion — rare cancers can be difficult to understand and treat. A second opinion will give you reassurance that you're going in the right direction with treatment. You may want to ask for a second opinion using new technology such as an e-consult or telemedicine to save on costs.
  • If you need financial assistance, look for resources from organizations and foundations designed to help you such as the Cancer Financial Assistance Coalition, Patient Advocate Foundation and Cancer Care.
  • Look for peer support from patient support groups online, such as the Cancer Support Community, the Rare Cancer Alliance or Imerman Angels.

Cancer survivors find great support from each other by sharing experiences, thoughts and feelings. Many times, the most value is in finding someone else to talk to who's experienced a similar situation. Reach out to others through social networks and general support groups.

Look for opportunities to volunteer or be an advocate for other cancer survivors. In doing this, you may find the people you meet along the way become your personal support group, regardless of cancer type.

Many of you have written words of wisdom to each other on the blog regarding rare cancers. What have you found helpful?


Sheryl M. Ness, R.N.

March 09, 2013