Back to Table of Contents | October 2010

Cover Story

Survival Strategy

As more people are surviving cancer, medicine is responding with programs that address their lifelong needs.

By Kate Ledger

As she took stock of the severity of her cancer, the Eden Prairie resident came to terms with the prospect of losing her dominant left hand and forearm: “I was able to choose life,” she says, adding that she relied on yoga, meditation, and her faith to restore her sense of well-being. Bachman has faced numerous challenges during the last several years, learning to depend on her right hand and to navigate two types of prostheses, each useful for different tasks. Although her charisma and fortitude have enabled the now-grandmother to establish a new career as a motivational speaker, she says, “There are still days when I grieve.” Bachman is one of more than 10 million Americans—and 23 million people worldwide—who have survived cancer. “The good news,” says HealthPartners oncologist Kurt Demel, M.D., “is that advances in treatment have meant that many cancers have become more like chronic conditions than terminal diseases.” At the same time, he adds, patients often face new medical and emotional challenges after their treatment is over.

From “Victim” to “Survivor”

When the term “survivor” was first used in connection with cancer in the 1960s, the word didn’t refer to the patient. At the time, fewer than half of those diagnosed with the disease lived past treatment, and the designation of “survivor” applied to patients’ family members. As treatment improved and patients went into remission, parlance changed so that “survivor” became the term for those who’d lived five years past their diagnosis. In 1986, the founders of the National Coalition for Cancer Survivorship set out to change the common reference of cancer “victim” to cancer “survivor.” A “survivorship” advocacy movement started to gain momentum, identifying not only the medical but also the psychosocial, legal, and economic problems that came with a cancer diagnosis and treatment. That movement went mainstream thanks in large part to the work of famous survivor Lance Armstrong. Today, there are myriad groups such as the ACS Cancer Survivors Network and LiveStrong that provide education and social, financial, and psychological support for people who have faced a cancer diagnosis.

But until recently, the unique concerns of cancer survivors had largely been overlooked by the medical community. As the number of survivors continues to escalate, greater attention is being paid to the requirements of post-cancer care. In Minnesota, which has played a key role in researching the long-term health concerns of cancer survivors, survivorship programs have emerged in both academic and community medical centers. They’re helping patients address what’s known as “late effects,” the long-term health complications caused by the disease itself and treatment with chemotherapy and radiation. In addition to teaching patients about the late effects and offering support for the unique long-term psychosocial issues that arise after diagnosis, the programs also enable survivors to segue from oncologists’ offices back to their primary care doctors and to seek support on their own. What’s evolving, explains Demel, who directs HealthPartners’ survivorship program at Regions Hospital in St. Paul, is cancer care that acknowledges the lifelong nature of the disease and helps survivors adjust to what becomes “the new normal.”

Survivorship Clinics

Only a decade ago, patients for whom cancer treatment led to remission were considered “lucky” and were expected by friends and family as well as physicians to resume their lives and quietly put up with any long-term consequences. But many survivors found doing so difficult. It wasn’t clear, for instance, which doctor they should see for an unusual new symptom. Should they return to their oncologist or should they see their family physician? In fact, a study that assessed the stress levels of survivors found two peaks: one at the time of diagnosis and the other at the time treatment ended. One of the big questions survivors were suddenly facing after their final oncology visit, says Carol Jirik, R.N., care delivery supervisor with HealthPartners’ survivorship program, was “Where do I fit in now?”

That question was underscored when, in 2005, the federal government asked the Institute of Medicine to assess how well cancer survivors’ long-term health needs were being met by doctors. The report, “From Cancer Patient to Cancer Survivor: Lost in Transition,” described a number of shortfalls in the care patients received as they returned to their primary physicians. The study cited wide variability in follow-up care and reported that there were no standard recommendations to screen for the after-effects of treatment. The authors recommended better education that would both empower patients and direct primary care providers.

The report led to physicians paying increased attention to survivors’ needs at major medical institutions around the country. At the University of Minnesota in 2005, a pediatric long-term follow-up clinic for childhood cancer survivors was already taking shape. University oncologists and epidemiologists had long been orchestrators of pivotal survivor research, in particular, a National Cancer Institute-supported, 27-center study probing the medical records of more than 14,000 pediatric cancer patients that began in 1996. By 2003, the Childhood Cancer Survivor Study had identified several late effects of cancer treatment, including premature menopause and stroke, and pointed to the need for survivors and physicians to be aware of potential health complications.

However, after the Institute of Medicine report came out, the emphasis at the university evolved from research to care. Young survivors treated at the university or elsewhere could come to the clinic for a health consultation with an oncologist, nurse, and social worker. Children treated at the university are referred to the clinic five years after treatment and are tested for proper growth and development in order to ensure they’re entering puberty when they should. They receive a special dental exam because cancer treatment sometimes interferes with the development of teeth and jaw bones. They’re tested for cardiac issues and for lung function. The visits often include a meeting with a neuropsychologist because children who’ve undergone certain radiation treatments frequently have learning disabilities and attention disorders. Survivors can return for annual consultations into adulthood (the oldest patient at the pediatric clinic is now in her 60s, having been treated for cancer when she was in her teens).

After the consultation, patients receive a treatment summary that describes the survivor’s cancer and the therapies he or she underwent. It’s a document that’s intended to bridge the information gap between the patient’s oncologist and primary care physician. Sometimes the summary can provide life-saving information, says University of Minnesota pediatric oncologist Joseph Neglia, M.D., who was one of the organizers of the Childhood Cancer Survivor Study. Patients treated with radiation for leukemia, for instance, are at increased risk for heart disease. “You don’t typically expect that a 20-year-old with chest pains is having a heart attack,” he says. But a primary care physician who knows the patient’s cancer treatment history—and the associated risks—will be prepared to consider such a possibility.

Recently, it became clear that adult survivors could benefit from the same type of resource. Last year, the university established a long-term follow-up clinic for people who’ve had cancer as adults. Directed by oncologist Anne Blaes,

M.D., the clinic now sees patients on Fridays for an in-depth assessment of their long-term health risks. “We’re looking for late effects of treatment in patients who are five years out from treatment. It begins with a close look at the types of chemotherapy, surgery, and radiation they had during their treatment,” she says.

What’s important to note, says Nancy Youngren, R.N., who writes treatment summaries at the clinic, is that the course of disease or the road to recovery is never the same for any two patients. “You can see two people who had the same cancer at the same age and received the same care, but one has no complications from treatment and the other has many.” Thus, the treatment summaries outline the range of risks based on the latest research. But experts say they are essential for directing follow-up care.

For instance, in a 35-year-old patient who was treated a decade ago with mantle radiation and combination chemotherapy for Hodgkin lymphoma, Blaes is concerned about potential cardiovascular problems including heart failure, valvular dysfunction, and atherosclerosis. Her recommendations would include having an annual echocardiogram and a stress test, as well as aggressive management of blood pressure and cholesterol. Because mantle radiation treatment also elevates the risk of breast cancer, she also recommends breast MRI rather than mammography. If the patient’s spleen was radiated, Blaes explains that he or she is at risk for infections and advises the patient to remain up-to-date on flu and pneumococcal vaccines.

Such consultations are becoming typical at large academic institutions around the country. They’re less common, notes HealthPartners’ Demel, at community medical centers; but HealthPartners offers something similar and provides patients with a treatment summary to take home and share with their primary care physician. The summary covers the details of treatment and the recommendations for follow-up care and screening. The thinking is that once patients have these summaries in hand, they can ask the appropriate questions of their primary care doctors and get the necessary follow-up tests.

Delivering that information to primary care providers is an important part of survivor care, Blaes says. There are indications primary care providers may need more information about caring for cancer survivors. A survey of Park Nicollet physicians in the Twin Cities showed that oncologists believed primary care physicians were comfortable assuming care of cancer survivors but that some primary care physicians felt uncertain about patients’ specific follow-up needs. A National Cancer Institute study described at a recent oncology conference showed that this uncertainty about follow-up care for cancer survivors exists nationally. To help inform doctors about changes in survivorship care, the Mayo Clinic Cancer Center, American Cancer Society, Minnesota Cancer Alliance, Minnesota Oncology, Minnesota Ovarian Cancer Alliance, HealthPartners, University of Minnesota Masonic Cancer Center, and Minnesota Society of Clinical Oncology are sponsoring a cancer survivorship conference next April.

Patients Play a Part

One subtle-but-critical change that has taken place in recent years is the point at which a patient is considered a survivor. Many oncologists these days are resolute: Patients become survivors at the moment they’re diagnosed. This perspective gives patients a jump-start on attaining the services they’ll need when treatment is over, notes Timothy Sielaff, M.D., Ph.D., a surgeon and president of the Virginia Piper Cancer Institute at Abbott Northwestern Hospital in Minneapolis. A patient with a complex head and neck cancer, for instance, will be connected right away with the speech pathologists and cancer rehabilitation specialists who will help guide the healing process after surgery. He or she also will meet members of the Penny George Institute for Health and Healing, who can provide emotional and spiritual support and offer ideas about nutrition and exercise. The early action can even help patients have better outcomes, Sielaff says. “Patients who are empowered and educated about the recovery process can have expedited healing and reduced therapy associated morbidity,” he says.

Although the label of survivor may seem a stretch to patients still battling the disease, the new definition resonates with Minnesota Oncology’s Mark Sborov, M.D., who has come to see his role in treating cancer anew. “In the past, we had limited treatments, and at five years patients were considered cured and were discharged from our clinics. But oncology is exploding and new treatments are coming down the pike all the time, and people with cancer are living longer and from the moment of diagnosis are adjusting to their new lives. There’s a whole different kind of support that we need to be giving our patients, not only talking about their treatment and their prognosis but also discussing what they need along the journey,” he says.

Minnesota Oncology has implemented a pilot program in its Edina office that addresses the new approach to cancer care and helps patients with potentially curable malignancies connect with resources in the community. After meeting with an oncologist, patients have the opportunity to sit down with a nurse to review their diagnosis and treatment plan and discuss their physical, emotional, and financial needs. The nurse can then direct them to community support groups, provide referrals to psychologists, or connect them with resources such as the Angel Foundation, which helps cancer survivors with nonmedical expenses. They meet again at the end of treatment, so “patients don’t feel they’re out on a limb all by themselves,” Sborov says.

The challenge, he explains, has been funding the staff to provide this service. (The consultations at the university and at HealthPartners are reimbursed through insurance, and most health plans tend to cover the cost of follow-up care. Agencies such as the National Cancer Institute and the Children’s Cancer Research Fund also provide grants to fund components of survivorship programs.) Sborov says the pilot program is helping them determine the cost of providing the additional patient support.

Like the pilot program at Minnesota Oncology’s Edina clinic, the HealthPartners survivorship clinic connects patients with resources including a social worker to address psychological needs and a dietician to answer questions about what foods to eat in order to keep their immune systems as healthy as possible. They might even get information about employment law. “If they’ve been away from work for a long time because of illness, if their job has changed or they’ve lost their job, we connect them with resources that provide legal advice,” Jirik says. “The care is really driven by the concerns individuals have, what they feel their needs are.”

In fact, it’s the growing feedback from survivors themselves that will determine what survivorship care will look like in the future, Demel says. Survivors sit on advisory councils at many of the clinics, and they describe what kinds of help they need and where they could use more support. Many have pointed out the need to reach out to primary care doctors with recommendations for follow-up care. Others have emphasized that physicians need to encourage patients to acknowledge the emotional distress of the disease while treatment is taking place instead of after it is over. Survivors helped the HealthPartners clinic fine-tune the introductory patient packet. “Based on what they told us, we pulled a lot of stuff out and began to figure out how to give it to patients when they needed it, so information about diet, for instance, was available at the right moment and not when patients were most overwhelmed,” Jirik says. Survivors have even weighed in on the issue of when to initiate conversations about advance directives and hospice care. “Those are always touchy subjects for everyone,” she says. “So it’s incredibly helpful to have survivors’ input.” Demel has no doubt survivorship programs will continue to incorporate new approaches. “This is an evolving area,” he says. “We’re learning all the time.” MM

Kate Ledger is a St. Paul freelance writer and frequent contributor to Minnesota Medicine.