For cancer survivors, health care is anything but routine.
Peter Noble is eager to close the book on cancer, or at least get it down to a novella, and move on. Noble, 57, learned in November 2009 that he had cancer of the tonsils that was staged between 2 and 3. Thirty-five radiation treatments and three rounds of chemotherapy meant he had to use a stomach tube for six months.
Noble's treatment ended in March 2010, and for a year he saw his internist, his head and neck surgeon, his medical oncologist and his radiation oncologist every three months. Each of them had a slightly different approach to Noble’s follow-up care. In May 2011, he stopped seeing his radiation oncologist.
“They were duplicating follow-up, and he seemed the best one to drop,” Noble says.
When he asked his head and neck surgeon about seeing only one specialist, the doctor offered to send a letter to the medical and radiation oncologists and work it out. His last visit was spent between the two offices trying to determine which scan was needed. Then, when he decided to stop seeing one oncologist and be followed by the head and neck surgeon, he received a registered letter from the oncologist asking him to come in.
“It’s confusing, costly and possibly unnecessary,” he says. “I’m grateful for this team; they saved my life. But I’m looking forward to the day, which my doctors say may be in four or five years, when I can transfer all my care to my internist.”
The concept of long-term cancer survival is relatively new, and even professionals concede there is no consensus on what care should look like or who should provide it. In 2005, the Institute of Medicine issued From Cancer Patient to Cancer Survivor: Lost in Transition, a comprehensive look at the needs of survivors, which listed four components of quality cancer survivorship care:
Prevention of recurrent and new cancers, and of other late effects;
Surveillance for cancer spread, recurrence or second cancers; assessment of medical and psychosocial late effects;
Intervention to help with effects of cancer and its treatment; and
Coordination between specialists and primary care providers to ensure that all of the survivor’s health needs are met.
As most healthcare professionals know, these are ambitious goals, and a nationwide survey of medical oncologists and PCPs concerning cancer survivorship care released at the American Society of Clinical Oncology’s annual meeting in Chicago has shed some light on a few of the challenges to achieving them.
Sponsored by the National Cancer Institute and the American Cancer Society, the survey found that those PCPs who were following breast and colon cancer survivors for five or more years after their initial cancer treatment were more likely than oncologists to order tests or treatments as malpractice protection. The PCPs also reported being concerned about their lack of training to manage patient problems.
“Primary care physicians expressed a lack of training in essential content areas pertaining to survivorship care,” says Katherine S. Virgo, PhD, managing director of health services research for the American Cancer Society and lead author of the study. “Continuing education plus the provision of a treatment summary and survivorship care plan are needed to reduce barriers on the part of the primary care physician.”
Until there is a clear path for patients, Lost in Transition says the starting point and essential ingredient in follow-up care is a comprehensive care summary and survivorship care plan.
Ideally, a patient’s oncologist or nurse would, at the end of treatment, create a document that carefully explains therapy, follow-up care and what to expect in the future.
But heavy patient loads and lack of insurance reimbursement for time spent on creating care plans are persistent problems.
“So many newly diagnosed people are coming through the front door to be treated,” says Richard Boyajian, RN, NP, clinical director of the Lance Armstrong Foundation Adult Survivorship Program at the Dana-Farber Cancer Institute in Boston. “There aren’t enough oncologists as it is. Asking an overwhelmed provider to take the time to create a care plan for each patient finishing treatment is fantasyland.”
Boyajian advises a more succinct approach. “When your treatment is complete, be proactive to get as much information as you can,” he says, suggesting you ask your provider some basic questions: What is my cancer type, stage and other critical characteristics? What was I treated with? Does this treatment put me at any risk? What follow-up do I need?
Survivors need to educate themselves, advocate for themselves, keep current on findings about late effects and update their treatment summary and care plan annually. Many times, they need to educate the PCP provider as well.
“That’s a big assignment, and it’s not always easy,” says Linda A. Jacobs, PhD, RN, director of the LIVESTRONG Survivorship Center of Excellence at the University of Pennsylvania’s Abramson Cancer Center. “You may need help from family or friends. But the shortage of oncologists and primary care doctors, overwhelmed practices and changes in insurance reimbursements mean patients have to take more responsibility for their own care. Things do fall through the cracks.”
Cancer survivors who live near one of the few cancer centers with a survivorship clinic may want to consider accessing this resource after they’ve been released from their oncologist’s care.
Judith Buelow, 64, of Spring, Texas, completed successful treatment for ovarian cancer at M.D. Anderson Cancer Center in Houston more than 22 years ago. For 17 years she saw her oncologist annually. Then, in 2007, she became the first person to enroll in M.D. Anderson’s Gynecologic Oncology Survivorship Clinic, which consolidates follow-up care into a one-stop center staffed by advance practice oncology nurses. She visits the program once a year to be sure the cancer has not returned and to check for any late effects. She likes the continuum of care the survivorship clinic provides, and the fact that all of her records are consolidated. She sees her general practitioner for annual checkups.
“I toyed for years with [the] idea of giving up my oncologist,” she says. “He is very busy, and I felt a little selfish. But the patient/doctor relationship is so emotional, and there was such a level of comfort with him.”
Survivorship clinics, which are becoming more common in major cancer centers, are generally staffed by midlevel providers, such as advance practice nurses or nurse practitioners. They offer an ideal situation for survivors, but there are still too few to make it a primary recommendation.
“Survivorship care is a moving target, and it’s still evolving,” Jacobs says. “We’re making rapid strides, but everything takes time.”
Although Noble is concerned his new insurance provider might reduce or stop coverage of his doctor visits at some point, he says he feels good about the current state of affairs.
“When you know you’re getting good care, albeit too much, it gives you a feeling of comfort and peace of mind,” says the University of North Texas journalism lecturer. “If the cancer does come back, we’ll catch it early.”
When cancer treatment is complete and the flood of emotions subsides, patients are likely to have a lot of questions about what comes next. For a period of time, which is determined by the type of cancer and treatment, as well as overall health, survivors will usually be followed by one or more of their cancer physicians. But how long should multiple visits go on, and who decides? What happens after that? Does one cancer doctor take over for long-term follow- up? Which one? Or is it time to return to a primary care physician (PCP) closer to home? If the patient does move to a PCP, what does he or she need to know to provide the best long-term monitoring of a particular cancer?