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Cancer Survivors Lack Follow-Up

Americans who survive cancer treatment find themselves with no organized system for maintaining their physical and mental health in the long term, an Institute of Medicine report concluded Monday.

The report praised advances in drug development and other cancer care that has drastically increased the chances of survival for patients with many forms of cancer. But it also warned that cancer survivors — who now number approximately 10 million in the U.S. — usually end their treatment with no plan from doctors on how to monitor disease recurrence or other consequences of malignancy.

Experts also pointed to wide variations in how physicians track and care for cancer patients once they leave treatment, and called for medical societies to adopt more universal practice guidelines to help smooth the disparities.

"It's about time that we did this in a systematic way," says Patricia A. Ganz, MD, director of cancer control at the University of California and a member of the panel that issued the report. "This is not hi-tech," she tells WebMD.

The lack of organized care for cancer survivors is in many ways a symptom of vast improvements in cancer care. Many diseases that were once nearly universal quick killers, including breast and testicular cancer, are now often curable.

Advances in surgery, chemotherapy, and radiation treatment have more than tripled the number of American cancer survivors in the last three decades.

Raising Awareness of Survivors' Needs
After treatment cancer survivors face years of close monitoring for a possible return of their cancer. Many treatments also carry an increased risk of long-term health effects. Men with prostate cancer often face sexual dysfunction. Women with breast cancer face an increased risk of osteoporosis associated with the use of certain hormonal therapies to treat their disease.

Hundreds of other side effects and long-term consequences go along with cancer cures, the report concludes.

"Awareness needs to be raised for both health care providers and the general public. It is common now for cancer patients to finish their primary treatment unaware of their heightened health risks. They are therefore ill-prepared to manage their future health care needs," says Sheldon Greenfield, MD, chair of the IOM panel and director of the Center for Health Policy Research at the University of California at Irvine.

'Survivor' Plan
The report recommends that all patients upon leaving oncology care have a "survivorship care plan" laying out their history of diagnosis, treatment, and long-term follow-up recommendations for primary care providers. It also calls on health insurers and the federal Medicare and Medicaid programs to pay for such plans.

Experts also called on medical societies to begin treating long-term cancer survival as a largely distinct medical condition, with its own professional training courses and practice guidelines.

"Some guidelines are available," Greenfield tells WebMD. "But most are incomplete and not based on solid evidence," he notes.

The report also shows that 11 percent of cancer survivors under 65 years of age lack health insurance, and calls for private insurers and government programs such as Medicare to find ways to expand access to coverage. High costs for drugs and ongoing screenings are often too expensive for patients to meet for years after primary treatment ends, experts say.

SOURCES: Institute of Medicine, "From Cancer Patient to Cancer Survivor: Lost in Transition." Patricia A. Ganz, director of cancer control, University of California, member, IOM panel. Sheldon Greenfield, MD, director, Center for Health Policy Research, University of California at Irvine, chairman, IOM panel.

By Todd Zwillich
Reviewed by Louise Chang, MD
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