Focusing on the Long-Term Needs of Cancer Survivors

Some health care experts now consider cancer a chronic illness, and are pushing for better long-term care and support for survivors.

Over the past 30 years, the number of cases of metastatic breast cancer in women under the age of 40 has tripled, experts say.

Survivorship programs at hospitals help address the long-term needs of people who have had cancer.

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When Catherine Mize received word that St. Jude Children's Research Hospital wanted her to travel to Memphis and spend several days completing comprehensive health questionnaires and undergoing a core battery of medical evaluations, she looked at it as an opportunity to "give back to St. Jude's in a very tangible way."

Mize, 56, a retail sales buyer in Tupelo, Miss., spent a year as an outpatient receiving chemotherapy and radiation when she was diagnosed with Hodgkin's disease in 1978. "The hospital was full of sweet, darling children, ranging in age from infants to young adults," says Mize, adding that she was the oldest child at St. Jude's at the time. "When I was there, I remembered the times when we were all waiting for our radiation together," she said.

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Between 2007 and 2012, Mize and 1,712 other patients returned to St. Jude's as part of the St. Jude Lifetime Cohort Study (SJLIFE), a study of post-treatment health consequences in long-term cancer survivors. She may have initially seen it as a philanthropic endeavor, but it turns out that her participation may have actually saved her life a second time.

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"St. Jude's recommended that I get a cardiologist, because they have been seeing long-term heart issues in patients who have had the kind of radiation I had," Mize explains. When independent physicians at the North Mississippi Medical Center examined Mize's arteries, they found one to be 99 percent blocked and implanted a stent in June.

Mize has had other serious health conditions since she was cured of Hodgkin's disease in the 1970s: Her thyroid was removed in the late 1980s due to noncancerous "knots" on it, and she was diagnosed with ductal carcinoma in situ in 2009. She is just one example of why some experts have started calling cancer a chronic disease, one that requires long-term follow-up care.

"Sometimes patients will have a chronic relapse in their cancer, sometimes they will take chronic medications, and some people never get to go off their meds," says Dr. Melissa M. Hudson, director of St. Jude's Division of Cancer Survivorship and immediate past chair of the Cancer Survivorship Committee of the American Society of Clinical Oncology (ASCO).

The results of the St. Jude LIFE study, published in June in the Journal of the American Medical Association (JAMA), found that 80 percent of people who have been cured of childhood cancer have a life-threatening, serious or disabling chronic condition by the time they are 45 years old. For example, abnormal lung function was diagnosed in 65 percent of those who received certain types of radiation treatments as children, and problems with the hypothalamus and pituitary gland were diagnosed in 6 percent of such survivors. About 56 percent of at-risk patients also had heart abnormalities, and 48 percent were diagnosed with problems such as memory impairment, according to the JAMA article. About a third of adult patients who are still alive five years after being diagnosed will still have cancer, says Hudson, who was the lead author on the LIFE study.

While primary care physicians may not realize that cancer survivors need follow-up care, oncologists are keenly aware of that fact. ASCO launched their Cancer Survivorship Committee in 2011, and created a survivorship plan for breast cancer in 2009.

"Breast cancer patients is one of the groups that has reached a high population of survivors who are clamoring for this need," says Hudson. In the next year, ASCO hopes to publish guidelines for the long-term surveillance and treatment of depression, fatigue, neuro-cognitive problems, neuropathy and sexual dysfunction in cancer survivors.

"Survivors need to reach a critical mass, because these programs are not revenue-generating," she says. "Almost every pediatric oncology center has some provision for long-term follow up, but I would be surprised if as many as 25 percent of adult care centers have adequate provisions for survivor care in place."


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breast cancer
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