Finding Survivor Care

In 2006, the Institute of Medicine and National Research Council released From Cancer Patient to Cancer Survivor: Lost in Transition. The goal of the study—the first of its kind—was to examine the range of medical and psychological issues faced by cancer survivors and to make recommendations to improve their health and quality of life.

One such recommendation was to recognize that cancer survivors have unique medical needs and should have available, specialized follow-up care. Since then, clinicians and researchers have begun addressing the issues of who provides survivor care, how that care is delivered and what services should be available.

Each year, an increasing number of cancer centers advertise the addition of survivorship programs. Some focus primarily on quality-of-life issues, while others offer a holistic approach of evaluation and recommendation for follow-up, says Linda Jacobs, PhD, RN, director of one of eight LIVESTRONG Survivorship Centers of Excellence, located at the University of Pennsylvania Abramson Cancer Center in Philadelphia.

“Each emerging program is different,” Jacobs says. “They respond to regional needs as well as the population. Some only focus on one population of survivors, and some only provide services to their own patients.”

This variation in services means survivors “have to have the knowledge to take care of themselves.”

Jacobs says the first step is to document your treatment, either by calling the cancer center where you were treated or by completing a care plan using one of the available tools online, such as the LIVESTRONG Care Plan available at www.livestrongcareplan.org.

Another option can be found at www.asco.org/treatmentsummary from the American Society of Clinical Oncologists.

“Next, you need to understand what you are at risk for and what does the surveillance look like for those issues,” she says. “So, take the care plan to your primary care physician and ask, ‘What am I at risk for based on the exposure I had?’”

This discussion may also bring up necessary tests to serve as a baseline, Jacobs says. For example, if the heart was in the radiation field, Jacobs says, an echocardiogram will give an assessment and serve as a baseline since these late effects don’t generally show up for a decade. A lipid profile is also needed, as are baselines for thyroid and lung.

Survivors also need to be prepared for the fact that some primary care physicians may not understand the need for monitoring or risk assessment—or may not feel confident making a recommendation.

“We see that as part of the problem,” she says. “Primary care providers don’t know what to look for or don’t have the confidence that’s needed to proceed. At this point, the patient needs to say, ‘I have read X,Y, Z, and I need to know what you think.’”

Survivorship researchers are working toward what Jacobs calls “catching these physicians up with the needs of their patients,” giving as an example a California continuing medical education program for primary care physicians to learn about late effects and how to prevent, monitor and treat them.

But the bottom line remains that patients have to advocate for themselves.