Turning Pain Into Purpose With GI Cancer

A survey about life after GI cancer has sparked the creation of specialized survivorship care plan.
BY STACY VERNER
PUBLISHED: MARCH 21, 2017
When Martha Raymond, M.A., CPN, executive director of Michael’s Mission and co-chair of the GI Cancers Alliance, conducted an anonymous online survey to explore the unmet needs of patients with gastrointestinal (GI) cancers, she was shocked at their gutwrenchingly honest and disheartening responses.

“Fifty-one percent didn’t even know what a survivorship care plan was,” Raymond says of the 507 participants in the six-week national survey conducted in the fall of 2016. “Another 23 percent said their health care provider never mentioned the need for one.” Based on Raymond’s data, only 8 percent of those who survive GI cancer have a survivorship care plan in place.

Yet in 2005, the Institute of Medicine recommended that each cancer patient, upon completing treatment, be equipped with such a roadmap; now, centers that want accreditation from the Commission on Cancer are required to provide survivorship plans, including treatment summaries and follow-up/surveillance recommendations.

The survey — which included surviors of colon, stomach, rectum and other cancers, most of whom had been diagnosed at stage 3 or 4 — found that such plans could be helpful to this population, as most said their struggle didn't end once treatment did.

That struggle comes in many different forms: Over 50 percent of respondents reported feeling anxiety, depression, fear and sadness during treatment or survivorship, with 20 to 40 percent reporting hopelessness, denial and anger; in addition, many didn’t understand the steps they needed to take to help safeguard against cancer's return. Because GI cancer consists of 10 different diseases with varying stages and side effects, no two patients will ever have the same follow-up plan. And because there is no single set of guidelines across oncology on how to follow GI survivors, most patients feel uneducated and uncomfortable when it comes to their own survival.

BATTLING THE UNKNOWN

One of those survivors is Scott Murchie, who was diagnosed with stage 3 rectal cancer in April of 2011, when he was 48. After a fecal occult blood test, colonoscopy and upper endoscopy ordered due to a family history of polyps, Murchie’s GI doctor found a lime-sized tumor, immediately launching the resident of northern Virginia into a full-scale treatment plan.

“There were no signs or symptoms,” Murchie says. “I got the luckiest break in the world … If he didn’t order that test, who knows what would have happened?”

After four and a half months, during which he underwent two separate chemotherapy regimens, six weeks of daily radiation and two surgeries, Murchie then had to face an equally hard, yet lesser-known battle: survivorship. “You’re so focused on the treatment every step of the way, just getting through it,” Murchie says. “Then you’re done, and you don’t want to feel ungrateful, but this is in some ways when all the hard work happens. You ask yourself: What’s supposed to happen to me now? What am I supposed to do? How do I deal with the aftereffects both psychologically and physically?”



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