Cancer Survivors’ Problems Draw Attention

By Judith Graham, Chicago Tribune

Nov. 8–Lynette Bisconti thought she was done with breast cancer when she finished radiation treatment six years ago. How wrong she was.

First, the overwhelming fatigue hit, then the disabling pain in her neck and her shoulder, then the tingling and numbness in her fingers and her hands.

Bisconti’s thyroid started malfunctioning. Her hormones went berserk. Her head ached. All these problems, it turned out, were likely complications of cancer therapies.

In retrospect, “my cancer treatments were easier than what I’ve been through after,” said Bisconti, who lives in Menomonee Falls, Wis., just outside Milwaukee.

Some 10 million Americans are now cancer survivors. Large numbers are living longer than ever because of remarkable advances in early detection and treatment. But many survivors receive less-than-optimal follow-up and improvements in care are necessary, the Institute of Medicine advised in a major report released Monday.

“The negative consequences of cancer and its treatments are substantial and under-appreciated,” said Dr. Sheldon Greenfield, panel chairman and director of the center for health policy research at the Univ. of California, Irvine. “Many (patients) suffer permanent and disabling symptoms that impair normal functioning….(but) there is much that can be done to avoid, ameliorate or arrest these late effects.”

The Institute of Medicine study, which focuses on adult cancer survivors, highlights a profound shift in thinking about this once-deadly disease. Until recently, researchers and clinicians had one overarching goal: saving more lives. With improved survival rates, however, cancer increasingly is being viewed as a chronic illness like diabetes or hypertension, presenting a new set of challenges.

Some are medical. The very toxic therapies that assault tumors and help save lives put patients at risk of new problems down the road, including second cancers, heart disease, sexual dysfunction, cognitive impairments, infertility, and chronic inflammation, research shows. For any given patient, experts note, the risk of long-term complications depends on the type and location of the cancer, the nature and duration and treatment, and other factors.

For instance, women with breast cancer who receive chest radiation therapy are at risk of developing lung cancer later, according to research cited in the IOM report. Chemotherapy using agents known as anthracyclines ups the odds of contracting leukemia. And tamoxifen, a commonly used therapy for women with estrogen receptor-positive tumors, increases the risk of stroke, blood clots, and endometrial cancer.

Lynette Bisconti’s shoulder and neck pain and her tingling fingers are probably a result of nerve damage during radiation, doctors have said. Her fatigue is harder to diagnose but is a common complaint of cancer survivors. Hormone changes after chemotherapy have left this 42-year-old with menstrual and dermatological problems. And reconstructive surgery is now causing scarring around a breast implant, another source of discomfort.

“You think you’re done with cancer but you’re not because you’re dealing with what treatment has done to you,” Bisconti said.

Every cancer survivor such as Bisconti should get a written “survivorship care plan” at the end of treatment specifying therapies and prevention strategies recommended for the future, the Institute of Medicine report suggests. The care plans would also summarize a patient’s cancer history — onset, treatment, doses, outcomes, and so on — for all of the patient’s doctors.

Meanwhile, the medical profession should craft guidelines for treating cancer survivors, insurance companies should pay for needed services, model programs should be established and more research on problems in cancer survivors and effective treatments should be undertaken, according to 17 experts who authored the report. The Institute is part of the National Academies of Science

Others long-term complications of cancer are social and psychological, including conditions such as anxiety and depression and profound changes in a patient’s self-image or outlook on life. Linda Jacobs, who runs the oldest hospital-based cancer survivorship program in the country, at the University of Pennsylvania Cancer Center, said these “psycho-social” issues often surface as patients come to terms with the reality that their lives will never be same.

Michelle Mann, a 39-year-old mother of three who lives in Crystal Lake, chose the most aggressive possible treatment when a biopsy showed she had breast cancer four years ago. After surgery, radiation and eight rounds of chemotherapy, she thought she’d been through the worst, even though doctors warned of potential heart problems and memory loss down the road.

What she wasn’t prepared for was the nagging fear (“Would there be a recurrence? Will my daughter and sister be struck?”), the guilt (“I’m not doing enough to take care of myself”), and the anxiety (“what if something else happens?”)

“People told me, the farther you get away from cancer crisis, the easier it will become, but I’ve found the opposite to be true,” said Mann.

A week and a half ago, Mann reached out to Cancer Treatment Centers of America in Zion, which launched a new “after care” program for cancer survivors in January after a group of patients advised that more services were needed.

“They told us, you fix us and send us back into our lives without paying attention to what happens next,” said Anne Meisner, the company’s senior vice president for patient services.

All new patients now get counseling on possible long-term complications before selecting treatment, while returning patients are asked to complete an assessment of their functioning and are referred to services, if necessary.

One of the company’s patients is Sarah Cooper, a fitness instructor who had received therapy for breast cancer at Cancer Treatment Center’s Tulsa, Oklahoma hospital in 2001 and 2002. In the months and years that followed, Cooper gained 20 pounds and struggled with sleep problems, memory loss and depression.

“I had no idea why I was feeling the way I felt for a long time,” Cooper said. “I wish I had known what to expect so I could have been prepared.”

The Lance Armstrong Foundation is taking a lead in helping survivors like Cooper through its new “Live Strong Survivorship” network, a group of comprehensive cancer centers that are launching programs for people who have experienced cancer. Network members include the Dana-Farber Institute of Boston and Memorial Sloan-Kettering Cancer Center in New York City. Three new participants, including UCLA Medical Center, are soon to be announced.

The goal is develop medical guidelines and standards of care for survivors, promote research, disseminate best practices in the community, and provide services such as comprehensive assessments, said Doug Ulman, director of survivorship at the foundation. Ulman suffered three bouts of cancer in early adulthood, and said he “still deals with issues constantly,” such as not having a portable record of his cancer care for all his doctors or a care plan for the years ahead.

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