Making a Place for Cancer Survivors

PRIMARY CARE PHYSICIAN JENNIFER KIM IS HELPING PATIENTS BRIDGE THE GAP BETWEEN CANCER TREATMENT AND THE REST OF THEIR LIVES.

Every cancer patient hopes for a clean scan or blood test showing that all signs of cancer have disappeared. But it doesn’t always mean the end of the cancer story. Compared with the rest of the population, cancer survivors are at an increased risk of recurrence and second tumors. They also can have a host of complex physical, emotional, and psychosocial concerns related to their disease.

Many survivors are plagued by a fear of their cancer returning, and the anxiety can manifest itself in many ways. Treatments can also leave patients with ongoing nerve pain, lung and heart problems, or fertility issues.

Finding a health care provider to address those issues can be tricky. While oncologists can’t keep seeing patients indefinitely after signs of their cancer have disappeared, primary care physicians can be wary of answering patients’ questions that might relate to an oncology diagnosis. It leaves patients in an awkward position.

“People often feel a little bit lost when their oncologist, who they’ve been seeing regularly for months or years, says they’re doing great and don’t need to come back,” says Jennifer Kim, MD, a clinical assistant professor of medicine who is piloting a cancer survivorship clinic at Stanford.

Through her new clinic, Kim is helping bridge the gap between oncology and primary care, ushering both patients and health care providers through this transition.

As of 2019, the population of cancer survivors in the United States has grown to 17 million people. Improved treatments and earlier detection methods mean that people live longer after a cancer diagnosis than ever before—many decades, in some cases. That growing population has led to the emergence of cancer survivorship as a niche field within medicine.

In recent years, it has become popular for oncology clinics around the country to offer patients a survivorship care plan—a one- or two-page document that outlines the patient’s history with cancer, any potential long-term problems they might experience, and recommendations for follow-up care or screening tests.

“Even when this is done, the information in the document isn’t always being fully communicated to primary care doctors,” says Kim.

Oncology programs have also started looking for other ways to ease patients through the transition from cancer treatment to more routine medical care, including integrating primary care doctors into their practices more closely.

Two years ago, breast oncologist Lidia Schapira, MD, approached Kim about starting a survivorship clinic. First, Kim had to read up on what Schapira meant.

“In all my training, I hadn’t even heard of the word survivorship,” says Kim.

But the more she read—and the more meetings and seminars on survivorship she attended—the more intrigued she became. She agreed to start a pilot program; she spent time shadowing oncologists at Stanford so she’d better understand the ins and outs of cancer treatment. Then she set aside two half-days a week to see patients with breast and gynecologic cancers from the Stanford Women’s Cancer Center.

She helped address specific problems each patient might be having, whether or not the issues were related to a tumor, and set up a long-term plan for cancer screening and primary care needs. The model was immediately successful, with positive feedback from patients and oncologists alike, and Kim’s schedule filled. Since then, she’s expanded to see people who are survivors of lung, colon, and childhood cancers.

For some people, one appointment with Kim is enough to send them on their way with a plan. For others, it may require months of follow-up before they feel ready to move to another primary care provider. In either case, Kim gives them information to pass along to their doctor—or, if they’re continuing to receive care at Stanford, she might call or message the primary care provider directly.

“The advantage of me doing this instead of an oncologist is that I know what most primary care doctors can understand,” says Kim. “I try to hand off recommendations that are manageable and not full of the kind of detail and inside jargon that oncologists might use.”

Survivorship Education for Doctors

Kim can see only so many patients, but her hope is that as more primary care doctors become aware of the unique needs of cancer survivors, others will step up. To that end, Kim and Schapira designed an online continuing education course for primary care doctors to learn key points about survivorship—common long-term and delayed effects of chemotherapy and radiation, for instance.

“You don’t need to be a survivorship expert to integrate these things into your everyday practice,” says Kim. For instance, if someone who once had prostate cancer treatment complains of frequent urination to their primary care doctor, they might normally test for diabetes or pelvic floor issues. But simply being aware that this can be a delayed complication of prostate cancer treatment can help them treat it more appropriately.

She thinks that with a little extra education, primary care doctors can become more comfortable treating cancer survivors. Rather than referring these patients back to oncologists, primary care physicians armed with the right knowledge can handle many of the long-term effects of cancer and cancer treatment on their own.

“Survivorship is a chronic disease, just like diabetes and high blood pressure,” says Kim. “So it’s appropriate for primary care doctors to manage these patients who need a little extra care; it’s just that some training is needed for us to get there.”