- The Washington Times - Monday, April 10, 2006

Ten million American cancer survivors live with the big “if”— whether the disease will reoccur and, for some, when and where.

Earlier detection and improved treatment methods have increased the number of survivors to the point where cancer is considered a chronic condition rather than an acute illness. However, medical practitioners also are finding that toxic effects of certain therapies can cause the disease to show up later, often in other parts of the body.

That would seem to give the lie to any pronouncement about a “cure” in some patients and validate the need for a long-term program of care, including information on preventive practices, often dispensed casually, if at all.

To date, broad-range post-treatment programs — customized guidelines for future maintenance and care — exist only on an ad hoc basis. Ex-patients mostly are adrift unless they initiate the effort, starting with a request for copies of medical records that contain the types of medicines used and the amounts.

This would change if the professionals most concerned follow the recommendations in a 500-page report issued in November by the Washington-based National Academies’ Institute of Medicine, titled From Cancer Patient to Cancer Survivor: Lost in Transition.

The report, the first of its kind, is an exhaustive account of the many issues involved in becoming an adult cancer survivor, among them the varying levels of care and lack of any consistent approach in easing the medical, social and psychological consequences of the disease.

Among the report’s recommendations is the need to develop a formal document called a Survivorship Care Plan, a move long promoted by the National Coalition for Cancer Survivorship.

The Silver Spring-based organization, led by two-time cancer survivor Ellen Stovall, is the main sponsor of a workshop to be held at the Institute of Medicine next month to discuss how to create a plan that would benefit the most people and how it would best be financed.

“We are literally talking about a document or record that is portable. It sounds simple in theory [but] it’s more complex in practice,” says Mrs. Stovall, 59, who began treatment for Hodgkin’s disease when she was 24 and the mother of a 6-week-old son. The disease recurred in 1983.

“The intent is to use it to inform your future care and allow a hand-off to whoever is going to be following you,” she says, giving by way of example the fact that “most people treated for immune-related cancers such as Hodgkin’s don’t know they should not get a flu shot because it can trigger an immune response that may not be desirable. This paper would say that.”

About 50 percent of people with cancer will have a recurrence, Mrs. Stovall says — excluding those with basal cell and cervical cancer — and “many of us who have had high-dose radiation therapy are at risk for other forms of cancer.” Others may be prone to long-term effects such as depression, infertility or heart disease.

Calling herself one of the lucky ones, she says she gets appropriate screenings but adds that not all physicians are aware of how to follow up.

“There [also] are treatments that are much newer, and we don’t yet know the long-term effects or the screening tests they will need,” she says. “So there is a choice of not doing the right tests or of overcompensating.”

The Survivorship Care Plan is just one element — but a major part — of a larger initiative outlined in an NCCS legislative draft proposal for improving the overall quality of cancer care, she notes.

Following protocol, the medical community asks that guidelines contained in such a plan be “evidence-based” and result from “peer-reviewed” clinical studies, which can take a considerable time to compile, says Dr. Sandra Horning, president of the American Society of Clinical Oncology and a professor of medicine/oncology at Stanford University.

The organization, some of whose members were involved in writing the IOM report, is working on what she calls a “template” defined in ASCO’s literature as a plan written by a primary care physician that would summarize the disease and treatment, provide specific information on timing and content of follow-up care, recommend prevention practices and give information about available psychosocial services, employment counseling and access to health insurance.

At present, in addition to support groups and occasional public forums, some Washington-area hospitals employ “navigators” who are specially trained to guide mainly low-income minority patients through the medical labyrinth. Navigators do not provide written long-term treatment plans such as the one envisioned by NCCS and ASCO.

The Texas-based Lance Armstrong Foundation also has awarded grants to a few leading hospital centers around the country to focus on survivorship matters, but none is in the District.

While acknowledging the good support and care she received from both her primary care physician and her oncologist, Kim Duhart, 48, of Fort Washington understands from firsthand experience the needs of cancer survivors. She was diagnosed seven years ago with cancer of the pancreas, one of the deadliest.

Surgery and subsequent radiation and chemotherapy “cured” her, but she never was told the exact stage of the disease when it was discovered and never was offered a copy of her medical records. She got follow-up information about dietary matters but no details about what ingredients in a nutritional supplement might not be good for her. Six or seven months after surgery, she was back to work at Lockheed Martin, although it was a year before she felt normal.

“You have to get a lot of information on your own,” she says. “What I wish had been more readily available to me at the time was information for people who have finished treatment, such as long-term effects of chemotherapy: how you are going to feel and for how long. … The nutritional aspect is really important, [but] nobody told me I might need enzymes. After removal, the pancreas won’t make any at all.”

Her primary care physician gave her some of this information, but her oncologist never mentioned it.

At the time of discharge from the hospital, she says, “you are overwhelmed, making it hard to go forward on your own. I see the value of a plan, but I think the delivery ought to involve working with a person, not just a piece of paper.”

“Most people treated for immune-related cancers such as Hodgkin’s don’t know they should not get a flu shot because it can trigger an immune response that may not be desirable.”

—- Ellen Stovall, cancer survivor

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