Collaborative Effort to Address the Needs of Cancer Survivors

In November 2005, the Institute of Medicine released “Lost in Transition: From Cancer Patient to Cancer Survivor,” a report that highlighted the void in which many cancer survivors find themselves following active treatment. Patricia Ganz, MD, a medical oncologist and director of the UCLA Cancer Survivorship Center, was on the IOM committee that wrote the report.

“In most cancer centers, and in good community practices, we do a pretty good job at the time of diagnosis informing a patient and their family what the diagnosis is, and what they’ll need to do to get through treatment,” Ganz says. “But patients often have no idea what to expect once they’ve finished their cancer treatment, and neither do the primary care providers on their team.”

To address the issue, UCLA, WellPoint, Genentech, and the National Coalition for Cancer Survivorship recently launched Journey Forward, a pilot program in California, Colorado, Maine, Nevada and New Hampshire to promote physician and patient understanding of the post-treatment effects of cancer.

Fixing a hole

Michael Belman, MD, MPH, medical director for Anthem Blue Cross, a WellPoint company, says that one of the biggest issues in healthcare delivery is the fragmentation and lack of coordination among primary care physicians and specialists. That fragmentation, he adds, is particularly noticeable in the oncology world. “Oncology is such a highly complex specialty, and primary care physicians feel in some cases a certain amount of insecurity dealing with these patients. In the absence of communication, it’s very difficult for primary care physicians to pick up and manage these patients with confidence.”

The challenge, says Ganz, is that there are approximately 12 million cancer survivors, and each year that number grows by about one million new diagnoses. “We need to find some way to make this [coordination of care] easier for docs to do.” That “way,” at least initially, is in the form of the Survivorship Care Plan Builder, a kit that Journey Forward is distributing to healthcare providers and patients explaining the importance of follow-up care plans, offering tools for providers to generate these plans, and providing interactive tools for patients to participate in the process. The kits will initially focus on survivors of breast and colon cancer.

“The intent of the Survivorship Care Plan is that it’s put together by the oncologist, but they then give a copy of the completed care plan to the primary care physician or physicians involved, as well as the patient, so everyone is on the same page,” says Jennifer Hausman, MPH, clinical research manager for Anthem Blue Cross.

A challenging journey

Susan Silver, senior director of communications and programs for NCCS, says the transition from cancer patient to cancer survivor is universally challenging. While patients are in treatment, they know who is watching over them and what they’re supposed to do from week to week. When treatment ends, however, they’re left with a feeling of, what’s next? “Cancer is a serious illness. And even when you’ve completed treatment, and in some cases have been told there is no evidence of disease, it’s very common and understandable for people to be concerned that they have special healthcare needs.”

Jasan Zimmerman, a cancer survivor and advocate, is one of those people. Zimmerman was diagnosed at 6 months of age with neuroblastoma of the left neck. The tumor was surgically removed, he was treated with radiation, and had checkups every three to six months thereafter. At age 15, however, he was diagnosed with thyroid cancer. He received a thyroidectomy and more radiation, but six years later, just after graduating from college, a recurrence of the thyroid cancer was detected. Following more radiation, he was given a clean bill of health, and has been cancer-free for the last 11 years. But, it was a long, hard road.

“When you’re 15, you’re just trying to find yourself, so I was dealing with that, and then dealing with [the thyroid cancer],” Zimmerman recalls. “And then going back to school … the way I felt was that people were looking at me differently and treating me differently. I just wanted to be a regular kid in high school like everybody else. And there was no information that you should look for a secondary cancer down the line, or look for any other physical issues that could be the result of treatment or surgery.”

Journey Forward’s Survivorship Care plan, Zimmerman says, is important because it keeps records and treatment summaries together. There’s a plan for checkups, and an idea of what patients should look for. “It gives you the idea that you’re being proactive in keeping an eye on your body. Because the thoughts of recurrence are always there. Sometimes they’re in the back of my mind, but they’re ever-present.”

WellPoint has mailed the kit to oncologists, and distributed a patient version to breast and colorectal cancer survivors. Post cards are also being sent to primary care doctors serving WellPoint to keep them informed. “This is free, anybody can use it,” says Ganz. “And the care plan is flexible and can be tailored by the doctors as they choose.”

Ed Rabinowitz is a veteran healthcare writer and reporter. He welcomes comments at edwardr@frontiernet.net.