Jacqueline Fincher, FACP, is vigilant in her management of patients with breast cancer. After the diagnosis, the Thomson, Ga., internist insists on making a follow-up appointment before the patient leaves her office, regardless of what's next on the agenda with specialists. If the patient's oncologist is late sending her the patient's chart notes or lab results, she calls.
Her concern is rooted in personal experience: Dr. Fincher, age 49, is a 17-year breast cancer survivor.
“Survivors in their 50s or 60s are facing the same health risk factors as your other patients,” said Dr. Fincher. “But somehow everybody gets fixated on just the cancer and that connection to the primary care provider gets overlooked.”
That connection has become more important with so many more women surviving breast cancer. The 10-year survival rate is now 80%, regardless of tumor type or stage, but long-term follow-up care of those survivors often is poorly coordinated, according to a 2005 Institute of Medicine report, “From Cancer Patient to Cancer Survivor: Lost in Transition.”
A recent study of 300 breast cancer survivors conducted at the University of Pennsylvania (See sidebar, ) found that while patients were generally satisfied with their post-treatment care, only 28% thought that their oncologists and primary care providers communicated well, and only 50% perceived their primaries as knowledgeable about cancer follow-up care. In addition, 59% didn't think they were well informed about the late effects of cancer therapy.
“A lot of times, after a patient is diagnosed with breast cancer we sort of lose them for a year or two because of the treatment. And then when they come back we don't know what happened to them,” said the study's lead author Jun J. Mao, MD, an epidemiologist and assistant professor of Family Medicine and Community Health at Penn's Abrahamson Cancer Center.
The care continuum
During a session at a recent breast cancer conference, Sue Frymark, RN, a veteran oncology nurse in Portland, Ore., and member of the medical advisory board of the Komen for the Cure Foundation, asked attendees to indicate whether they had received a survivor care plan.
“Very few hands went up,” said Ms. Frymark. “What I hear, frequently, is that many women are told to ‘come back in three months,’ but they don't know what happens after that—or what to expect long-term, from their treatment.”
“We need to be monitoring these patients for hypertension, heart disease, diabetes,” said Atlanta general internist Sandra Fryhofer, MACP, past President of ACP. Internists are best equipped to deal with issues patients face when they emerge from the active treatment: such as emotional stress, exhaustion and psychological issues, she added. “We know those patients and their particular stresses better than the oncologist does, and we know more about their family situation and support system.”
The increasing complexity of treatment regimens contributes to the disconnect between patient and primary care physician, said hematologist-oncologist Patricia Ganz, MD, who directs cancer prevention and control research at UCLA's Jonsson Comprehensive Cancer Center in Los Angeles. “More patients are getting treatment beyond surgery now,” Dr. Ganz observed. “I've been in this field 30 years, and we didn't treat everyone with some kind of chemotherapy or hormonal therapy until the last 10 years or so.”
In the past, many women had lumpectomy or radiation or mastectomy, and then returned to their primary physicians. Today, women may undergo protracted active treatment over one to two years, she said, and some may continue on endocrine therapy for five to 10 years.
This creates a gray zone, Dr. Ganz said. Oncologists do cancer surveillance and symptom management, but often other health issues fall by the wayside. If a 65-year-old cancer survivor has diabetes or hypertension, primary care physicians should be brought into the loop for a shared-care model.
The logical place to start is with the visits after the active treatment phase, according to Adam Brufsky, FACP, PhD, co-director of the Magee UPCI breast cancer program at the University of Pittsburgh. ASCO guidelines recommend a physical exam every three to six months for the first two years, but there's nothing to suggest that oncologists should remain in the driver's seat, he said.
“Women could go back to their internists as soon as they've finished treatment, even if they're on hormonal therapy, but primary physicians traditionally have wanted to avoid that,” Dr. Brufsky said. “Mainly, that's because of a lack of experience with various symptoms—concerns about whether they represent cancer recurrence or not.”
Some breast cancer patients don't fully return to primary care for four to five years, or whenever hormonal therapy concludes, and that's too late, according to Melissa McNeil, MD, chief of women's health at the University of Pittsburgh.
“There's been an explosion of new drugs, and the oncologists have been overloaded,” she said. “They're in a place where, now that they're finding more early stage cancers, they could use some help. Besides, someone has to be looking at their heart, their lipids,” because the majority of survivors are in their 50s and 60s.
Internists reasonably conversant in cancer treatments could manage treatment-associated effects, such as lymphedema, hot flashes and vaginal dryness, “chemo brain” cognitive deficits, fatigue, arthralgias and bone loss. More serious symptoms, persisting bone pain, pulmonary or hepatic issues and central-nervous system problems, warrant oncologists' attention. Dr. McNeil's clinic alternates visits every three months between internists and oncologists.
“If I see something I'm uncomfortable with, I call the oncologist, and vice versa,” she said. For community practicing internists she recommends devising a reasonable shared-care, alternating-visit schedule that works for all concerned, and proactive sharing of patient visit information.
Dr. Fryhofer also keeps the lines of communication open by:
- sharing labs and visit notes,
- receiving updated treatment summary at all key junctures and when therapy changes,
- voicing patient concerns to oncologists, and
- calling the patient monthly.
Dr. Fincher also tries to coordinate lab work with oncologists during the active treatment phase, especially for patients with comorbidities, to ensure screenings don't lapse. That's key during treatment, she added, because some cancer treatments raise blood sugars or blood pressure and may reduce hemoglobin counts.
When she sees new patients who are breast cancer survivors, Dr. Fryhofer requests a treatment summary from the previous oncologist and encourages the patient to establish with the local oncologist “to at least get a once-over and review the past treatment plan.”
Dr. Brufsky encourages both patients and PCPs to keep the connection with the oncologist in place for several years after treatment, even if no new problems arise.
“A lot of women will still want to see their oncologist at least once or twice a year, and many still want me to see the oncologist after five years to examine them, or check their mammograms,” Dr. Brufsky said. “A lot of that is about their [patients'] comfort zone.”
Crafting a survivor treatment and care plan
Closer collaboration between internists and oncologists can be facilitated through targeted information transfer and open, ongoing communication after active treatment concludes. But those two important elements have been under-addressed.
The gap can be reduced by use of breast cancer-specific treatment summaries, recommended by the Institute of Medicine in its 2005 report, “From Cancer Patient to Cancer Survivor: Lost in Transition,” which cited numerous shortfalls in the care patients receive after active treatment. In the past year, several organizations have called for a second document, a survivor care plan for the first five years after treatment. Following are recommended core elements of both documents:
The oncologist's treatment summary should include:
- diagnosis, including the cancer site, histology and stage
- summary of chemotherapy and other treatment planned and actually delivered
- reasons treatment was either stopped or modified
- recommendations on appropriate follow-up care and relevant providers
- evidence-based survivorship and surveillance guidelines from ASCO
A complete survivorship care plan includes:
- patient, patient support person and care-team contact information;
- pertinent family history details (for breast cancer), genetic testing status/results;
- known major comorbidities, medical conditions;
- patient diagnosis and treatment summary;
- treatment regimen, including surgeries, radiation and chemotherapy, with details of the number of cycles and serious toxicities;
- recommended schedule for follow-up tests;
- detailed information on potential late- and long-term effects of cancer treatment and brief guidance on monitoring for possible secondary cancers;
- important symptoms to look for and recommendations for addressing them; and
- support resources for patients.