Saturday, May 30, 2009

Online support for colon cancer patients and young survivors

Histopathologic image of colonic carcinoid sta...Image via Wikipedia

Colon cancer. Rectal cancer. Anal cancer.
They are the cancers with a high 'ick' factor, the cancers that embarass people, the cancers no one wants to talk about.
The screening guidelines for colorectal cancers (CRC) are based on the historical data that most people diagnosed with these cancers are over the age of 50. Due to this focus on an older patient population, it can be very difficult for patients under 50 to receive proactive, routine colonoscopies--even when they have a direct first-line (mom, dad, sibling) with a CRC diagnosis.

I was 48 years old when I was diagnosed with metastatic rectal cancer. The cancer had already spread to my liver, compromising as much as 85% of its function. I'd had at least five fecal occult blood tests (FOBTs) as part of health maintenance physicals; all were normal. I didn't know I had any kind of family history. And I didn't have any red-flag symptoms. My only symptom--which everyone took seriously--was sudden weight loss and wildly high liver enzymes which both were recorded within 8 weeks of my diagnosis. Had I waited until 50 for a screening colonoscopy, I'd be dead.

Because CRC education focuses on people 50 and over, there are almost no places where CRC survivors under 50 can go for support. In face-to-face support groups, I am often the youngest patient in the room, and almost always the only metastatic recurrent rectal cancer survivor.

But there is a place online which was started by and focuses on providing information and support for CRC survivors who are UNDER 50. The Colon Club and its online support forum Colon Talk work to provide a place of community for young CRC survivors to learn about their diagnosis, exchange treatment infomration, discuss side effects and share their cancer journeys. Anonymous 'guests' can participate in the discussion if they are concerned about the privacy of revealing that that are CRC patients. And the forum provides a healthy dose of the latest news in cutting edge treatments and improvements to the current standards.

If you are a CRC survivor of any age, finding a community to share your cancer journey which can also give you accurate CRC-specific treatment and side-effect information is very difficult. Finding a community which actively discusses survivorship issues unique to CRC patients diagnosed under the age of 50 is nearly impossible--unless you find yourself in The Colon Club.

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