From OncoLog, March 2006, Vol. 51, No. 3

What Happens Next?
Managing the Care of Long-Term Cancer Survivors

by Dawn Chalaire

Cancer—as well as many of the treatments for it—can have long-term medical consequences for survivors. With more people than ever surviving cancer today, M. D. Anderson Cancer Center is looking at how to best meet their long-term medical needs.

A 42-year-old woman tells her doctor that she is experiencing chest pains. Echocardiography reveals no abnormalities, and the woman is otherwise healthy, so her doctor suspects that she has heartburn. He prescribes Zantac and tells her to modify her diet. She follows his advice, but the pain continues and worsens. Months later, during a routine follow-up visit, the woman is found to have chronic pericarditis. What went wrong? The physician’s diagnosis was competent, based on the information he had at the time, but he was missing one key fact: 25 years ago, the woman was treated with radiation therapy for Hodgkin’s disease.

The scenario described above isn’t an unusual one. Improvements in the screening, diagnosis, and treatment of cancer mean that more people than ever are surviving the disease. In February, the American Cancer Society reported that the number of annual cancer deaths fell by 369 from 2002 to 2003, the first such decline in more than 70 years, and according to the latest estimate from the National Cancer Institute, there were almost 10 million cancer survivors in the United States in 2001. Today, 64% of adults with cancer will survive at least 5 years, and 75% of children will survive at least 10 years. But amid all the good news is the recognition that there is no comprehensive model for the medical care of cancer survivors. Survivors, and their primary care physicians, often find themselves navigating the complicated terrain of cancer survivorship alone.

Once they reach the 5-year survival mark, most cancer survivors leave the care of their oncologists and return to their primary care physicians—often with a host of potential problems related to the cancer and its treatment. It isn’t that today’s cancer treatments carry greater risks than previous therapies (in fact, many have less toxicity), but people are living longer now, which gives the problems more time to materialize. The side effects of cancer and its treatment can include fatigue, pain, lymphedema, oral problems, weight loss or gain, loss of bladder or bowel control, menopause symptoms, and sexual problems. In addition, cancer surgery can lead to physical limitations such as loss of mobility and weakness; chemotherapy can damage the testes, ovaries, heart, lungs, or bone marrow; and radiation therapy can damage normal tissue and glands in the radiation treatment field.

Most cancer survivors are at risk for recurrence, and many also have an increased risk of developing second cancers. Many types of chemotherapy put patients at higher risk of developing leukemia or the bone marrow failure disease, myelodysplastic syndrome. Survivors of childhood cancers not only have a higher-than-average risk of new cancers as adults but also are five times more likely to have a chronic disease as adults. More than one third of these survivors can expect to have a life-threatening illness or serious chronic disease (i.e., heart problems, dialysis or kidney transplant, paralysis, or mental retardation) by age 45.

In addition to physical problems, cancer survivors face a variety of issues that can affect their quality of life. Many experience depression and live with the ongoing fear of recurrence. Some have cognitive problems such as memory loss or attention problems. Children who have been treated for cancer often find themselves behind in school and may have delays in social development.

For the primary care physician, all of these issues combine to create a very complex patient. Managing the late effects of cancer and its treatment and recommending an appropriate screening regimen require the analysis of interrelated factors that are different for every patient. And to make things even more difficult, patients who have moved or changed primary care doctors since being treated for cancer may not think to tell their new physician about their bout with cancer.

Toward a survivorship care plan

A report published last year from the Institute of Medicine titled From Cancer Patient to Cancer Survivor: Lost in Transition states that there is no clear best practice for caring for patients with a history of cancer and that primary care physicians are seldom given explicit instructions by oncologists. The report recommends that oncologists develop a “survivorship care plan” for each cancer survivor that would include information such as the cancer diagnosis, treatment, and potential consequences; recommend the timing and content of follow-up visits; offer tips for staying healthy and preventing recurrences or second cancers; and inform survivors of their legal rights regarding employment and insurance and the availability of psychological and support services.

Rena Sellin, M.D., a professor in the Department of Endocrine Neoplasia and Hormonal Disorders at The University of Texas M. D. Anderson Cancer Center, calls the report “sort of a little Bible” for those who are interested in improving the care of cancer survivors. “From the perspective of the primary care physician, what this report recommends is that each patient leaving the oncologist’s office be provided with a detailed document that describes the type of cancer, type of treatment, and the follow-up recommended. That would help the primary care physicians know when they are dealing with a routine issue and when the cancer history becomes relevant and they need to consult the cancer center or the oncologist,” said Dr. Sellin, who heads M. D. Anderson’s Life After Cancer Care clinic.

Such a plan, according to Dr. Sellin, should also provide an individualized summary of the patient’s relative risks of recurrence, late effects, and second cancers. “So, for instance, for someone who was treated with radiation therapy and doxorubicin, the chart should note that there is a ‘moderate risk of early cardiac events,’ ” Dr. Sellin said.

An individualized care plan is necessary because of the many variables involved, including the type of cancer; disease stage, grade, and molecular characteristics; patient characteristics such as age, comorbidities, and overall health; and treatment, including its timing, dosage, and duration. “Many survivors don’t need anything special,” Dr. Sellin said, “but the oncologist should help the patient and the primary care physician determine that.”

If pieces of a patient’s cancer history puzzle are missing or misinterpreted, the risk of recurrence can be overestimated as well as underestimated, possibly leading to unnecessary tests and procedures. Another consequence of putting too much emphasis on a patient’s cancer history is that other important health recommendations, such as diet, exercise, and routine screening tests, may fall by the wayside. “What happens sometimes is that because you had cancer and you’re focused on that, you don’t think the other things are as important,” Dr. Sellin said. In fact, cancer survivors with a low risk of recurrence are often more likely to die of another disease.

Developing a chronic care model

According to Dr. Sellin, the field of oncology has only recently begun to address the issue of “what happens next,” after the 5-year cancer survival threshold, when a patient is considered cured. “This is part of the evolution of the field of cancer care. We are now beginning to develop a model for what happens after the cancer is controlled,” she said. Dr. Sellin chairs a task force charged with determining M. D. Anderson’s role in caring for cancer survivors. “We are comprehensively assessing what a cancer center should be offering to cancer survivors in the coming decades and seriously rethinking what is the right way to do it,” Dr. Sellin said.

One possible model of survivor care would be to coordinate the patient’s follow-up through a clinic like M. D. Anderson’s Life After Cancer Care clinic. Patients would visit the clinic every year or two for screening and to receive any new information about their disease. They could also be referred by their primary care physicians for evaluation of any problems that may be related to their history of cancer. “The clinic screens and evaluates patients and either refers them to the appropriate specialist at M. D. Anderson for further treatment or back to their community physician,” Dr. Sellin said.

Because a clinic specializing in the needs of cancer survivors would only be feasible in large cancer centers, additional models of treatment are needed. One option is to offer outreach programs that support primary care physicians and inform them about issues that may arise in their patients who are cancer survivors.

In Texas, the Physician Oncology Education Program, funded by the Texas Cancer Council, has sponsored a series of physician seminars in various parts of the state focused on cancer survivorship topics, including screening and follow-up care, late effects of cancer, nutrition and physical activity, pain and symptom management, dental care, and end-of-life planning. The program has also produced a series of information modules, including one on cancer survivorship, which will soon be available on the M. D. Anderson Web site. In addition, M. D. Anderson’s Office of Physician Relations is working with the Texas Cancer Council to deliver a “cancer toolkit” to local communities to help them develop programs to improve cancer care in their own areas, from screening and prevention to programs related to long-term survivorship.

Lewis Foxhall, M.D., vice president for health policy at M. D. Anderson and chair of the Physician Oncology Education Program’s education subcommittee, is optimistic that these grassroots efforts will make a difference for the growing number of cancer survivors. “I think there’s a real need for building this sort of capacity at the local level to take care of survivors and to do prevention and early detection work,” he said. “Texas has been a leader in developing these kinds of programs, and other states around the country are now following suit.”

For more information on this topic or for questions about M. D. Anderson’s treatments, programs, or services, call askMDAnderson at (877) MDA-6789.

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