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All Over the Map When It Comes to Survivorship

CUREGastrointestinal Special Issue
Volume 1
Issue 1

Every survivor of a gastrointestinal cancer has unique follow-up needs. A ‘road map’ for this process can help.

THE FIRST SURVIVORSHIP CARE plan tailored for patients with gastrointestinal (GI) cancers provides a road map for the journey, from first diagnosis to future follow-up.

The Treatment and Survivorship Care Plan was devised by the GI Cancers Alliance, a group of advocacy organizations, health care professionals and industry partners working to boost awareness and education about these cancers and to advocate for their prevention, treatment and cure.

The downloadable plan, which can be customized based on type of GI cancer, is available for free on the group’s website.

Other templates for survivorship care plans exist, but, with the exception of one that is specific to colorectal cancer, none focus on the needs of people affected by disease of the GI tract: anal, bile duct, colorectal, liver, rectal, stomach, appendix, esophageal, gallbladder, pancreatic or small intestine cancers.

“A Treatment and Survivorship Care Plan is a complete record and documentation of a patient’s cancer journey — from diagnosis into long-term survivorship,” the alliance’s document states. “Just as we are all different and unique as individuals, no two care plans will be the same. Our goal is to help facilitate a dialogue between patients and their health care teams as care plans are completed together.”

In 2005, the Institute of Medicine recommended that each cancer patient, upon completing treatment, be equipped with a survivorship plan for future care.

Centers that want accreditation from the Commission on Cancer are required to provide these plans, complete with treatment summaries and recommendations for follow-up and surveillance. Yet, 92 percent of patients with GI cancers who responded to the alliance’s nationwide 2016 survey did not have treatment or survivorship plans, the organization reported.

“Fifty-one percent didn’t know what a survivorship care plan was. Another 23 percent said their health care provider never mentioned the need for one,” says Martha Raymond, co-chair of the GI Cancers Alliance and founder of the Raymond Foundation, who worked with the alliance on its survey of 507 patients/survivors.

Such plans summarize the details of the cancer diagnosis and treatment and lay out action steps for areas needing follow-up — for example, management of long-term functional issues caused by surgery, such as colostomy bags; potential cancer recurrences; and psychosocial concerns. The plans also provide the information that can help guide new care providers on optimal and timely treatment if medical problems or recurrences develop. The alliance’s plan for survivors of GI cancers includes a 5 1/2- page glossary of cancer and treatment terms. It also provides space for patients or survivors to fill in information, including:

• A list of all health care providers, from oncologists to nutritionists

• Notes about the diagnosis and initial genetic testing results

• Treatment goals and plans

• Side effects experienced

• Emotional concerns

• Financial concerns

• Post-treatment goals and plans, including surveillance and visits to doctors

• Available resources and support services

“When someone is diagnosed with cancer in general, that feeling of control is gone,” Raymond told CURE® in March 2017. “But doing something as easy and as simple as putting together a binder of your health care information, bloodwork, scan results and appointment follow-ups … gives the patient that feeling of control again. They start to feel like ‘OK, I got this.’”

The document also features a small collection of quotes from the survey, which focused on the unmet needs of patients with, and survivors of, GI cancers.

“I am anxious and scared all the time,” one respondent wrote. “I don’t feel like I have any control of my life, and I need to figure out a way to balance my emotions.” Another suggested that survivors develop “a road map to help (you) determine next steps now that treatment is over.”

The alliance, which is composed of over 25 advocacy groups, an academic center, a health care professional advisory board and six sponsor groups, was founded in 2015 by the Ruesch Center for the Cure of Gastrointestinal Cancers at the Georgetown Lombardi Comprehensive Cancer Center in Washington, D.C. Its website also offers information on each GI cancer type and its treatments, lists of organizations specializing in each disease, and a general resource library.