Cancer Survivors Face a New Challenge in Care

May 17, 2012— -- Catherine Fitch was just 21 years old when she was diagnosed with Hodgkin's lymphoma.

Today, the five-year survival rate for patients diagnosed with this disease is 85 percent. But 36 years ago, when she received her diagnosis, it was almost a death sentence.

"The literature at that point called it a fatal disease," she said. Fitch, however, was lucky; she went to the Dana-Farber Cancer Institute, where doctors commenced an aggressive course of treatment.

"I was lucky to be in Boston, treated with massive doses of radiation, and I survived."

As with Hodgkin's lymphoma, survival rates from nearly all types of cancer are at an all-time high thanks to new research and treatment options. As a result, these patients are living longer. But ironically, the same treatments that saved these patients' lives shortly after diagnosis come attached with side effects that can materialize even years later. The most common long-term side effects from these treatments are heart damage, peripheral neuropathy, early menopause and new cancers.

Fitch understands these late-onset side effects all too well. She underwent an aortic valve replacement four years ago because her radiation treatments gave her a leaky heart valve. Two years later, she endured a double mastectomy for breast cancer, which was picked up with yearly screening mammograms.

Fitch does not begrudge the doctors she saw nearly four decades ago; after all, they saved her life. But new research suggests that recognizing and managing these side effects can be a challenge for doctors.

According to a study presented at the American Society of Clinical Oncology meeting in Chicago on Wednesday, primary care doctors are only about half as successful in identifying the side effects that occur year after treatment compared with cancer specialists, who are able to make the connection more than 95 percent of the time.

The findings stress the importance of communication between the specialties.

"The transition from specialist to primary provider should not be viewed simply as a direct handoff, but instead a gradual process," said Dr. Mark A. Fendrick, a professor of internal medicine at the University of Michigan. "This study demonstrates the need for a team-based approach."

But the transition from cancer patient to survivor does not always go smoothly.

"There are a number of serious challenges that we face in assuring a smooth transition, and they all revolve around communication and information exchange," said Mary S. McCabe, a registered nurse and director of the survivorship program at Memorial Sloan Kettering Cancer Center.

The ideal situation, she said, would be one in which the patient, his or her primary care doctor, and the cancer treatment team remain in constant communication even after the patient's cancer treatment is done.

One of the most important things a patient can do in order to ensure that this happens is to find and participate in a survivorship program. Offered by a number of medical centers, survivorship programs teach these patients how to communicate their needs to their healthcare team.

But not all patients have access to such programs.

"There are not enough structured cancer-specific survivorship programs available for all cancer survivors in all areas of the country," said Dr. Jennifer Litton, an oncologist at MD Anderson Cancer Center in Houston, Texas. "So working with the primary care providers will be extremely important for long term care for survivors in our country."

There are also resources online. The National Coalition for Cancer Survivorship has created a free website called Journey Forward, which allows doctors and patients to work together and create a survivorship care plan.

Fitch, now a 57-year-old mother of five, is looking forward to her eldest daughter's upcoming wedding and continues to find a balance between living life and being a survivor.

"I look back at 21, finishing my treatment," she said. "I wanted to say, 'I beat it, and I am going to go on with my life and not look back.' I didn't want to hear that down the line I was going to have problems.

"It is important to be aware of risks, what to look out for, and be a responsible survivor."