Focus on care plans, quality of life for cancer survivors

The 50-something woman had survived two cancers, but Patricia Ganz, MD, an oncologist in Los Angeles, had to convince her that she still needed screenings for other carcinomas, just like any woman her age. And, because she had received radiation for breast cancer, which can increase the risk of heart disease, she urgently needed to see a physician who could help modify her cardiovascular risk factors.

"We cured her breast cancer. We cured her lymphoma. But we can't forget lipids and colonoscopy. We cannot give up on important health promotion," said Dr. Ganz, director of cancer prevention and control research at Jonsson Comprehensive Cancer Center at the University of California, Los Angeles.

With the acknowledgement that more effective cancer treatment is creating a significant population of cancer survivors, physicians and other health care professionals are devising the means to provide better care for these patients. The goal is to ease the transition from oncology to primary care and other specialties to make it more likely that both routine health care needs, as well as those specific to having a cancer history, are met.

The American Society of Clinical Oncology last month published online survivorship care plans for those who have had this disease of the breast and colon. These blueprints outline for patients and physicians what treatments have been administered to what kind of cancer and the follow-up that might be needed.

More versions are expected, and the organization is working to get this documentation incorporated into electronic medical records. Cancer survivorship also was the subject of sessions at the Ninth Annual Lynn Sage Breast Cancer Symposium and the Chicago Supportive Oncology Conference, both in Chicago in September.

"We have a rapidly growing population of survivors who are looking to not only survive, but also have a quality of life. It's not enough to just cure the cancer," said Mary S. McCabe, RN, director of the cancer survivorship program at New York's Memorial Sloan-Kettering Cancer Center.

The survivorship issue came to the fore in 2005 with the Institute of Medicine report, "From Cancer Patient to Cancer Survivor: Lost in Transition." This document found that many patients and their primary care physicians had little idea of what to do next to maintain or improve their health.

Those advocating for increased attention to survivorship issues hope to get patients far more than recurrence monitoring, which traditionally has been the emphasis of much post-cancer care.

Experts want to make it more likely that survivors will get the same preventive and screening services as everyone else -- services that these patients may not believe they need.

Another focus is improving post-cancer quality of life. Cancer treatments can save lives, but many survivors report fatigue, cognitive problems, insomnia, sexual dysfunction and chronic pain long after the cancer is considered gone.

"It takes a tremendous toll," Dr. Ganz said. "Anything we can do to manage these symptoms can go a long way to making them feel better."

Some of the issues, such as pain, may be ameliorated with various medications and behavioral interventions. Other symptoms, such as cognitive problems, may feed off others, such as insomnia, so treating one may translate to overall health improvement. But research also is showing that informing patients of what to expect as a cancer survivor can be very effective in and of itself. For example, a video created by Dr. Ganz on this subject translated to increased vitality six months after treatment for those survivors who watched it.

"Treatment ends, and people really have no idea how long it's going to take to recover. This video sets up more realistic expectations," Dr. Ganz said.

Cognitive problems are the least understood, but researchers are exploring better ways to assess such problems for these patients and then find ways to prevent them. Investigations of this issue in childhood cancer survivors led to changes that made this aftereffect less likely. Those who work in this area hope the same will happen for adults, although early indications suggest it may be more complex than just changing cancer treatment.

"It's not just chemotherapy alone that's causing some of these cognitive problems. It's much more complicated than we once thought," said Tim A. Ahles, PhD, director of the neurocognitive research laboratory at Memorial Sloan-Kettering Cancer Center.

But experts also say enough data exist on some of the effects of cancer treatment to allow changes in current treatment modalities that could prevent some effect from developing or being as severe. For instance, data presented at the breast cancer meeting suggested that preoperative anxiety and depression, along with inadequate pain control during treatment, increased the risk of long-term pain. Experts say this suggests a prevention strategy.

"We need to continue to ask patients about pain, take this pain seriously and treat this pain seriously at the first sign," said Judith A. Paice, RN, PhD, director of the cancer pain program at Northwestern University's Feinberg School of Medicine in Chicago.