FOR THE PAST 12 YEARS, Marina Ferraro has been navigating life as a cancer survivor. It hasn’t been easy. Since Ferraro was diagnosed with stage I breast cancer at age 29 in March 2006, some of her doctors have moved away from New York City, where she lives and was treated for cancer. The recurring pain she has in her reconstructed breasts continues to mystify her plastic surgeon. She struggles with anxiety, insomnia and fatigue. And it’s not clear to her where she’s supposed to turn for help.
Ferraro says her oncologist was surprised when she showed up in her office to ask about follow-up tests years after she finished treatment. And although her primary care provider has been helpful, “I don’t feel like it’s her job to specialize in post-cancer stuff. It’s not her area of expertise,” she says. “I cobble it together myself and am doing a good job of making sure I get the care I need, but it’s clear to me there is a huge gap in care.”
As of 2016, there were an estimated 15.5 million cancer survivors in the U.S. Like Ferraro, many say they feel unmoored in the sea of survivorship. This isn’t news. Difficulties like those Ferraro and other survivors face were described in a groundbreaking 506-page report released in 2005 by the Institute of Medicine (IOM), From Cancer Patient to Cancer Survivor: Lost in Transition.
The report included 10 recommendations to help health care providers, insurers and researchers improve survivorship care. The recommendation that seemed the most tangible and, perhaps, easiest to implement counseled oncologists to provide cancer patients with what was dubbed a survivorship care plan. The document would summarize the patient’s diagnosis and the treatments received, explain potential short- and long-term side effects, provide a schedule of tests or scans needed to look for recurrence, and list general recommendations for care. It would, in short, be a road map and guide for individuals making the transition from being a patient under active cancer treatment to a survivor returning to a primary care physician for routine medical care.
Thirteen years later, fewer than half of cancer patients being treated at cancer centers accredited by the American College of Surgeons’ Commission on Cancer (CoC) receive a survivorship care plan. Clinical trials evaluating the plans haven’t found improvement in patients’ quality of life. Not all primary care physicians are prepared to treat long-term side effects of cancer and its treatments. And many patients who have completed their cancer care remain adrift.
After Treatment Ends
When President Richard M. Nixon launched the “War on Cancer” in 1971, it was heralded as a new day for cancer research. Many scientists and doctors felt like a cure was within reach. Their proof: the growing number of patients who were living for years after being treated for cancer with surgery and chemotherapy. For the oncology field, these patients embodied scientific success. Many doctors yearned to be part of it. “You wanted to be the person who develops the best new treatment,” says Lawrence N. Shulman, an oncologist at the Abramson Cancer Center at the University of Pennsylvania in Philadelphia, who began his medical career in the 1980s and is the current chair of the CoC. Focusing on what came after treatment “was much less of a pressing issue,” he says.
What comes after treatment also wasn’t, and still isn’t, the primary focus of an oncologist’s practice. “If you think about a medical oncologist seeing 25 patients in a day,” Shulman says, “there are patients with acute problems that need managing, like new metastases to the brain or a liver metastasis is growing.” In that setting, “the healthiest person looks like the cancer survivor.”
But many of those survivors don’t feel healthy. In 1986, a group of experts stepped into the void, establishing the National Coalition for Cancer Survivorship (NCCS). Their work, along with that of other patient advocates and oncology researchers, led the National Cancer Institute (NCI) to establish the Office of Cancer Survivorship in 1996. Meanwhile, the number of cancer patients, survivors and patient advocates continued to grow. For many of them, the 2005 IOM report with its list of recommendations wasn’t only groundbreaking—it was long overdue.
A New Standard for Care
Getting care plans into the hands of survivors—which many expected to see accomplished quickly—didn’t happen to the extent envisioned. To nudge hospitals along, the CoC informed its members in 2012 that its accreditation standards would include a requirement—now known as Standard 3.3—that cancer patients receive survivorship care plans.
There are currently more than 1,500 CoC-accredited cancer programs in the U.S. These programs see more than 70 percent of all newly diagnosed cancer patients. CoC accreditation is voluntary. It is also something programs pay to undergo. But the accreditation means patients can expect a certain standard of care. The CoC gave cancer programs applying for new or renewed accreditation time to phase in their efforts to provide survivorship care plans. To be accredited, hospitals were required to have 10 percent of patients receive a care plan in 2015, increasing to 50 percent by the end of 2017 and 75 percent by the end of 2018. (The percentages were based on patients who had a potentially curable cancer; they did not apply to patients with metastatic cancers that could be treated but not cured.)
Expectations for implementation were high, and resources to help hospitals meet the standards were available. Journey Forward—a collaboration of the NCCS, the UCLA Cancer Survivorship Center, Cancer Support Community, the Oncology Nursing Society, health insurance giant Anthem and biotech firm Genentech—released a computer-based tool that oncology professionals could use to develop a customized survivorship care plan for their patients. The American Society of Clinical Oncology (ASCO) published survivorship care templates that doctors could give to their patients or patients could bring to their doctors. Patient advocacy groups began encouraging patients to ask their doctors for survivorship care plans.
When Neolla Costner was diagnosed with stage II breast cancer in June 2014 at age 38, her care team at Beaumont Hospital (formerly Oakwood Hospital) in Dearborn, Michigan, a CoC-accredited facility, provided materials to her that were in line with the IOM’s recommendations for survivorship care. In a black tote bag with pink handles in the shape of a breast cancer awareness ribbon, Costner received a complete summary of the treatment she had undergone, pamphlets produced by the NCI on life after cancer treatment, an accordion folder to organize bills and medical records, information about nutrition services, and materials that explained each of her cancer treatments and their common long-term side effects. Costner says she couldn’t imagine what it would be like to not have that information. “You have to have some type of blueprint when you leave there,” says Costner. “You need to know what to expect.”
By late 2017, it was apparent that many hospitals did not have the infrastructure necessary to meet Standard 3.3. So the CoC dialed back the goal for 2018 from 75 percent of cancer patients receiving plans to the 2017 goal of 50 percent. There is no question that Standard 3.3 “put survivorship care on the radar of more hospitals,” says Shulman. But on the implementation front, he says, “some hospitals have done wonderful things and some have struggled.”
Lillie D. Shockney, a nurse and a two-time breast cancer survivor, directs the cancer survivorship programs at the Johns Hopkins Kimmel Cancer Center in Baltimore. Shockney chaired the CoC task forces that reviewed the survivorship care plan standards and barriers to implementing them, and set the new recommendations. One difficulty hospitals face in meeting the requirements, she says, is how labor-intensive it is to go through a patient’s medical records and write up the plan.
But that is actually a symptom of a larger problem: an overtaxed medical system and a growing wave of cancer survivors. There are not enough oncologists now—a predicament that will only worsen, Shockney says, as baby boomers age, increasing the total number of cancer patients. There is also a shortage of primary care physicians. Not only do primary care doctors have limited time with each patient, says Shockney, “they did not learn cancer survivorship in medical school because it was assumed the oncologist was going to follow the patient.”
Patients may know more about what they need than their doctor does. Dana Merk, who was diagnosed at age 21 with acute myeloid leukemia, knows this all too well. Now 36 and a nurse, Merk, who lives in Chicago, did her own research to develop a survivorship care plan and then shared what she learned with her internist. “I literally Googled long-term guidelines for cancer survivors and kind of extrapolated from there,” she says. “I told my internist I need an echocardiogram every two years and a complete blood count test every year.” While doing her research, Merk learned that the high-dose chemotherapy she received, which included the drug daunomycin (daunorubicin), had wiped out her immune system, and she needed to have all of her childhood vaccinations again. “My internist spoke to my hematologist and we figured it out,” Merk says. “She’s great, and she said, ‘I’ll do whatever you need me to do,’” she says of her internist, “but we are both flying by the seat of our pants.”
Meeting Survivors’ Needs
The emphasis put on providing cancer patients with survivorship care plans has obscured another concern: Studies have shown minimal evidence that they are beneficial. Paul B. Jacobsen, associate director of the Healthcare Delivery Research Program in the NCI’s Division of Cancer Control and Population Science, discussed the research on survivorship care plans at the 2018 ASCO Cancer Survivorship Symposium, held in February in Orlando, Florida. His review included 24 studies that asked patients questions ranging from how satisfied they were with the care they received to how they would rate their physical and psychological well-being. Jacobsen found little evidence the plans were improving cancer survivors’ quality of life, but that doesn’t mean they aren’t helping. It’s possible, says Jacobsen, “that the outcome measures being used aren’t sensitive enough to detect what the plans can do.”
“Survivorship care plans are really only a vehicle for trying to frame care that the patient needs,” adds Shulman. “The thing that I keep coming back to in my own mind is if you do this long enough and you talk to enough survivors, it’s clear this is still an area where we are falling short.”
No one expects a single method of implementation to be successful in all settings. At Johns Hopkins, the solution came in the form of six primary care doctors who decided to focus on cancer survivorship. Patients are told at the outset of care that they will get a one-hour consultation to prepare them to make the transition to their own primary care physician. At that appointment, a nurse practitioner discusses lingering side effects, potential late effects and other medical concerns the patient may have. The nurse practitioner also provides the patient with a survivorship care plan and treatment summary written in language that is easy to understand, and a copy is sent to the patient’s primary care doctor.
Hematology-Oncology Associates of Central New York (HOA), in Syracuse, has a nurse practitioner specializing in survivorship meet with patients when they finish treatment. Patients receive a survivorship care plan and information about potential treatment-related side effects and how to manage them, says HOA medical oncologist Jeffrey J. Kirshner. Even with a plan in place, “most patients want to be followed by us for at least five years” and still think of their oncologists as the doctors to do cancer screening or manage other health problems, Kirshner says. “We encourage them to go to their primary care physician, but the reality is it’s often easier for them to get in to see one of our nurse practitioners than to see their doctor,” he says. “Also, many are afraid that whatever they may have, it may have something to do with their cancer.”
Patients and providers agree that it is the fear of a recurrence that often keeps patients tethered to their oncologists. Samantha Eisenstein Watson, a 17-year survivor of Ewing sarcoma and secondary myelodysplastic syndrome, founded the Samfund in 2003 to provide financial support to young adults with cancer. A longtime patient advocate, Watson, now 40 and living in Boston, was treated at Memorial Sloan Kettering Cancer Center in New York City. Her oncologist routinely suggested she get care from her primary care physician, but, she says, “I still wanted to see him.” Then one day, he called her to break the news that he was moving to a cancer center in another state. “I started sweating at my desk,” she recalls. “I also began thinking that this is probably what I needed [to have happen] to transfer my care to a primary care physician.”
Since she made the switch in December 2017, Watson says she feels she must be more responsible for her care. “I have a primary care physician who is willing to go along with the guidelines,” she says, “but she doesn’t know much about young adult cancer.” Even so, Watson, whose mother is an oncology nurse, says she is more concerned for other cancer survivors than she is for herself. “I’m not the patient most likely to fall through the cracks,” she says. “It’s the survivors who don’t have doctors who are knowledgeable or who have limited options for getting health care that I worry about.”
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