Non-Cancer Care Lacking
Cancer survivors’ other medical problems are undermanaged.

By Malin Jennings

Ron Weitzel’s oncologist was a man of few words. When Weitzel was treated for prostate cancer in 2004, all the specialist would tell him was that he had cancer and needed an operation and radiation. Weitzel received no guidance about what his needs—both non-cancer and cancer-related—would be after treatment. “I wish my oncologist had volunteered more,” Weitzel says. “It’s important information.”

Fortunately, Weitzel taught at the Library of Congress at the time, teaching history and government to Congressional pages. He was able to put his research skills to work to answer questions his doctors didn’t.

But even healthy communication between patient and doctor may not be enough. Craig Earle, MD, a Dana-Farber Cancer Institute oncologist, remembers a patient he eventually saw. Several years after successful treatment for Hodgkin’s disease, the patient called his previous oncologist complaining of chest pain and shortness of breath. The good news was that after running a series of diagnostic tests, the doctor found no sign of cancer. He attributed the chest pain to the late effects of radiation.

The bad news was that the patient had advanced heart disease, something oncologists don’t necessarily look for. And therein lies the problem, says Dr. Earle.

After studying more than 31,000 Medicare claims for 14,884 five-year colorectal cancer survivors and 16,659 individuals with no cancer history, Dr. Earle made a counter-intuitive discovery: Colorectal cancer survivors are less likely to get comprehensive care than people who never had cancer. Without a primary care doctor, the survivor group was less likely to receive routine preventive care, such as flu vaccinations and cholesterol check-ups. In addition, survivors with diabetes were much less likely to have regular follow-up visits compared with the control group. In fact, 587 cancer survivors in the study had seen only their oncologist in the five years since their diagnoses.

“Many patients don’t see a primary care physician because they assume their oncologist is providing complete care,” Dr. Earle says. “There’s a disconnect in understanding.” Dr. Earle’s research points to a relatively simple cause of this medical deficit: poor communication.

Failure to Communicate

Call it the “I-just-assumed-you-knew” syndrome in which oncologists assume primary physicians are explaining the post-treatment healthcare process to patients and primary care physicians assume oncologists are doing it. Add to that survivors who assume they know the medical process backwards and forwards.

One reason for this confusion stems from some cancer survivors misunderstanding the role of their oncologist. They assume that once they’ve been branded with the big C, their oncologist becomes a one-stop source of medical care for everything from a brain tumor to plantar warts. In other cases, survivors become so focused on cancer treatment that they lose touch with their primary care doctor even if they had one before diagnosis.

“Some specialists are easier to access than overloaded primary care providers,” says Robert Siegel, MD, director of the division of hematology and oncology at George Washington University Medical Center. The waiting period to get an appointment with some family doctors can be weeks, possibly months. “Even getting a prescription refilled can be complicated,” says Dr. Siegel.

There is also a contingent of survivors who are reluctant to raise general medical questions with their oncologist. “Patients sometimes think their non-cancer symptoms are minor,” says Dr. Earle. “For instance, they may minimize acid reflux, saying it’s just heartburn. But acid reflux can evolve into esophageal cancer (see CURE, Spring 2005). A primary care doctor can put that into context.”

But patient misunderstandings are just one side of the problem—doctors are the other. “If you look at the expectations of the various parties involved,” Dr. Earle says, “what you see is a communication breakdown.”

Oncologists are conditioned to look for signs of cancer. Cancer specialists examine patients with an eye that is trained to bring symptoms of that disease into bold relief, but this can decrease recognition of other illnesses. The potential blind spot can be compounded if primary care doctors don’t follow up with cancer patients after treatment or don’t explain the post-cancer healthcare process, as was the case for Weitzel.

Victims of Our Success

Ironically, the need for improved survivorship communication is largely the result of advances in cancer treatment and rising survival rates. In 1974, when former First Lady Betty Ford revealed she had breast cancer, such a diagnosis was akin to a death sentence. Today, thanks to advances in treatment, Ford is among the 10 million cancer survivors in the United States.

The burgeoning population may ultimately trigger the creation of a new medical specialty: survivorship healthcare. To help survivors, the American Society of Clinical Oncology established a Survivorship Task Force in late 2004 to identify and manage a range of activities to improve the care of cancer survivors.

But Dr. Siegel says survivors don’t need specialized post-treatment care as long as their oncologist and primary care physician talk openly with them and one another. Dr. Siegel says he sends notes to his patients’ primary care doctors after each visit so that the physician can pick up where the oncologist left off. “I have two constituencies: my patients and their primary care physicians,” Dr. Siegel says. “I have an obligation to them both.”

Earning the distinction of cancer survivor, says Dr. Earle, shouldn’t overshadow overall healthcare. Patients must be proactive in receiving routine medical checkups and doctors must improve communication to ensure continued health for all cancer survivors.