With the help of powerful new drugs and surgical treatments, millions of Americans survive cancer, but doctors often ignore the patients’ needs after saving their lives, the National Academy of Sciences said on Monday.
The number of cancer survivors is growing rapidly, but their care is often haphazard and disjointed, so no one notices a recurrence of cancer or side effects that can occur months or years after treatment, the academy said in a new report.
One reason for the lack of appropriate follow-up care, it said, is that in many cases, insurance companies and health plans do not cover the necessary tests and examinations.
Dr. Sheldon Greenfield, chairman of a panel of 17 experts who conducted the study, said: “There are now 10 million Americans who have had cancer. Thanks to successes in cancer detection and treatment, as well as an aging population, their ranks are growing steadily.” But, Dr. Greenfield said, many survivors are lost in the health care system, “somewhere between active treatment and long-term follow-up.”
More than 6o percent of cancer survivors are 65 or older, so Medicare is “the primary payer of care for cancer survivors” in the United States, said the panel, established by the Institute of Medicine, an arm of the academy. It said government programs like Medicare, as well as insurance companies, should pay cancer specialists to prepare a comprehensive plan describing the follow-up care that ought to be provided to each person treated for cancer.
Cancer specialists should routinely provide such plans to internists and other primary care doctors, the panel said. At present, said Dr. Greenfield, a professor at the University of California, Irvine, “there is no organized system to link oncology care to primary care.”
Patricia Grullion, 46, of Los Angeles described what she experienced after being treated for breast cancer in 2001 and 2002.
“When my treatment ended,” Ms. Grullion said in an interview on Monday, “I was given a clean bill of health, but nobody gave me any real plan for the future, or any thoughts about what I could expect physically or emotionally. During the treatment, I focused on the task at hand, like a warrior. But after the treatment ended, I felt lost. I should have been elated, but I was scared, I was crying. Whenever I had a cold or an ache in my bones, I wondered, ‘Is the cancer coming back?’ “
The American Society of Clinical Oncology, which represents more than 20,000 cancer specialists, welcomed the academy’s recommendations and said it would try to carry them out. “The oncology community agrees” with the proposals, said Dr. Patricia A. Ganz, a breast cancer specialist who is on the society’s board and was a member of the panel that wrote the report.
“Millions of patients are living with cancer as a chronic condition and need good long-term follow-up care,” said Dr. Ganz, a professor at U.C.L.A. “An internist or family doctor may send hundreds of patients for mammogramsand colonoscopies, but in many cases they know little about the treatment their patients receive for cancer.”
An explicit written plan for follow-up care could save lives by increasing the probability that primary care doctors will detect a recurrence of the original cancer, development of a new cancer or “chronic preventable conditions” that follow treatment, Dr. Ganz said.
Cancer survivors often experience psychological problems, including depression, persistent anxiety, debilitating fatigue and fear that cancer will return. Patients treated with surgery, radiation and chemotherapy may suffer infertility or impairment of sexual function, and have an elevated risk of developing osteoporosis, congestive heart failure and other heart problems, strokes and blood clots. In some cases, the panel said, chemotherapy may cause leukemia or bladder cancer.
Cancer survivors sometimes find that they are uninsurable. In many states, the panel said, insurance companies refuse to sell individual health insurance policies to people with a history of cancer, or charge them much higher premiums than are paid by other subscribers.
In addition, “a majority of cancer survivors who worked before their diagnosis return to work following their treatment” but often face discrimination from employers, sometimes even losing their jobs, the report said.
In some cases, the discrimination may violate federal or state laws. But Janlori Goldman, a research scholar at the Columbia University College of Physicians and Surgeons, said, “Federal law is not entirely clear about whether employers can discriminate against a person who currently has cancer, has had cancer in the past or has a genetic predisposition to it.”