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Post-cancer care found deficient

Survivors need to know what's next, report says

Washington — The day their treatments end, millions of cancer patients walk into a world that fails to recognize the toll the disease will take on their lives, the Institute of Medicine said Monday.

Along with inevitable confusion and fear, the survivors face problems ranging from changes in appearance to limitations in communication, mobility and thought processes.

Better awareness is needed among employers, insurance companies and even primary care physicians of the special needs of more than 10 million American cancer survivors, said a committee set up by the institute.

Without it, they are becoming "lost in transition," the committee said in a report sponsored by the National Cancer Institute, the Centers for Disease for Control and Prevention, and the American Cancer Society.

And because of improvements in diagnosis and treatment, their numbers will grow dramatically, the committee said.

As a first step, the committee said, insurance companies should pay for consultations in which cancer patients and their oncologists draw up "survivorship care plans" as soon as treatments end.

The committee said the plan should summarize critical information needed for the patient's long-term care, including:

• Cancer type, treatments received and their potential consequences.

• Specific information about the timing and content of recommended follow-up care.

• Recommendations about preventive practices and how to maintain health and well-being.

• Legal protections regarding health care and access to insurance.

In addition, the committee said health care providers need new guidelines to manage delayed effects of cancer and its treatment, as well as the increased likelihood cancer survivors will develop a second cancer.

It called on government health care funders such as Medicare and Medicaid to underwrite new interdisciplinary treatment approaches.

It said Congress should fund CDC and collaborating institutions such as the Lance Armstrong Foundation in developing comprehensive cancer control plans.

And it warned that cancer survivors are at risk of experiencing subtle employment discrimination, as well as barriers to health insurance.

The report was hailed by cancer survivors, including University of Georgia professor Kathy Parker, who learned in 2001, three days after her brother had died of colon cancer, that she had a rare cancer called vulvar sarcoma.

"I tend to be a pretty optimistic person, but the fear never goes away," said Parker, who continues to compete in endurance athletic events.

She said that when she was in the hospital for surgery she drew strength from bicyclist Armstrong's book, "It's Not About the Bike," describing his own battle with cancer.

She said the report addressed needs that are largely unrecognized by society — and many cancer survivors — who must endure periods of depression and lifelong physical changes.

Another cancer survivor, Ellen Stovall, president of the National Coalition for Cancer Survivorship, said the report exposed "a glaring gap in care."

Stovall, who was a co-editor of the report, said it would provide "cancer survivors, policy makers, federal agencies, health care professionals and advocacy groups like NCCS the evidence needed to effectively change and improve the quality of cancer care in the United States."