Living with a Rare Cancer

Bob Riter is the retired Executive Director of the Cancer Resource Center. His articles about living with cancer appeared regularly in the Ithaca Journal and on OncoLink. He can be reached at bobriter@gmail.com.

A collection of Bob’s columns, When Your Life is Touched by Cancer: Practical Advice and Insights for Patients, Professionals, and Those Who Care, is available in bookstores nationwide and through online retailers such as Amazon and Barnes & Noble. All royalties from the sale of the book come to the Cancer Resource Center.

The most common cancers in adults are prostate, breast, lung, and colorectal. Combined, these cancers account for nearly half of all cancer diagnoses. Other relatively common cancers include melanoma, kidney, leukemia and bladder.

If you were diagnosed with breast cancer this past year, you might be comforted (and/or disturbed) to learn that some 235,000 other Americans received the same diagnosis. Similar numbers exist for prostate cancer.

But many cancers are rare. For example, fewer than 1,000 Americans are diagnosed with appendix cancer each year. Other cancers are diagnosed in less than 500 individuals. There are dozens of cancers that are so rare that you’re unlikely to meet another person with the same diagnosis except in the waiting room of a major cancer center.

There’s generally good data on which to base treatment recommendations for the common cancers. If you have a rare cancer, there’s less data, so treatment is more likely to depend on the clinical judgement of a specialist for that specific type of cancer.

Thus, patients with rare cancers often have two oncologists. One is the specialist at a major hospital who makes the treatment recommendations, and the other is a local oncologist who often administers the treatment and monitors the patient on a regular basis.

Patients with rare cancer tend to become good advocates because they know their overall situation better than anyone. Their doctors do communicate with each other, but the patient should always double-check and ask questions if the doctors don’t seem to be on the same page.

One woman with a rare cancer told me that her friends didn’t quite understand her cancer. Since she didn’t lose her hair, some assumed that it couldn’t be too worrisome. (Hair loss does not suggest whether a cancer is serious or not. It’s simply a side effect of certain chemotherapy drugs).

It has to be a lonelier experience dealing with a rare cancer than with a common cancer. There aren’t support groups specifically for the rare cancers nor are there celebratory 5K runs.

But, as one individual with a rare cancer told me, “I have today and I’m going to make the most of it.”


Reprinted with permission of the Ithaca Journal.

Click here for all of Bob’s columns

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