Giving Survivors a Voice in Planning Their Follow-Up Care
For cancer survivors, the fear of missing an early sign of recurrence or a second cancer is an everyday reality, making follow-up monitoring
Deborah Korenstein, MD
For cancer survivors, the fear of missing an early sign of recurrence or a second cancer is an everyday reality, making follow-up monitoring—not only for cancer but other post-treatment effects—essential.
On the other hand, visits to a sometimes dizzying array of subspecialists and undergoing multiple diagnostic tests and imaging studies can cause an added level of stress, especially when that surveillance leads to overdiagnosis and false alarms.
How do clinicians and survivors strike the right balance?
In her talk January 15 at the 2016 Cancer Survivorship Symposium, Deborah Korenstein, MD, suggested a way forward, grounded in a more individualized approach to survivorship care.
Cancer survivors are at risk for physical and medical complications from their disease or therapy, and certainly for a long time, there was not enough attention to these risks, explained Korenstein, an associate professor and director of Clinical Effectiveness at Memorial Sloan Kettering Cancer Center.
Now, however, guidelines for survivors tend to recommend more aggressive care, she said. “Survivors have very high rates of anxiety particularly around surveillance testing, sometimes referred to as ‘scanxiety.’”
Survivors are also at risk for financial harms, Korenstein added, citing recent research showing that approximately 30% of survivors report financial problems due to their treatment.
“We [as clinicians] generally look at survivors as a group. We can be driven by fears of missing things, which I think leads us to a sort of checkbox approach … and I think this can make us fail to individualize care.”
Such personalized care, she suggested, starts with the individual patient and an understanding of what his or her goals may be.
As an example, Korenstein presented the case of a 46-year-old woman who was diagnosed with acute lymphocytic leukemia at age 6 and was treated with total-body irradiation, high-dose chemotherapy, and an allogenic stem cell transplant. She was diagnosed with papillary thyroid cancer in 1989, renal cell carcinoma in 1990, and now has multiple comorbid conditions, including severe cardiopulmonary disease, early cirrhosis, hypertension, and diabetes.
This single mother lives 2.5 miles from the cancer center, is unable to work due to her comorbid conditions, and has two daughters with severe mental health problems. She is insured only by Medicare and thus has to pay 20% of all medical bills, and her current medical debt is estimated to be at least $20,000.
Korenstein examined the woman’s care over 1 year and found that she spent 20 days as an outpatient at the cancer center for various diagnostic tests and multiple physician visits. Importantly, said Korenstein, this follow-up was all related to surveillance of her chronic conditions and not related to her cancer therapy: “These tests were not done in reaction to a new symptom.”
The patient’s goals were to live as long and normal a life as possible, which for her included simply being able to function well, minimizing inconvenience and debt, and being able to forget about her health problems and focus on her children.
Did all those tests and physician visits help her to meet these goals?
Korenstein said that the evidence is mixed or inconclusive on the effectiveness of the various interventions the patient received in terms of mortality and quality-of-life benefits and harms. While they may help to prolong her life, “did we optimize her functional status? I’m not so sure—I think the majority probably didn’t,” Korenstein said.
“We most certainly did not help to minimize her debt, her inconvenience … we did not allow her to ever forget about her health concerns, and we certainly did not facilitate her being able to focus on her children.”
“I don’t mean to suggest that all of these are equivalent, because clearly mortality is a more significant outcome than inconvenience,” Korenstein continued. “But I do think it’s important for us to think about the spectrum of outcomes that are important to patients and at least take all of them into account.”
Korenstein suggested that looking at the evidence supporting specific interventions can help decide which are most beneficial to the survivor. “Obviously, we need to make clinical decisions for patients without optimal evidence … but when we’re balancing benefits and harms, we need to be mindful of the quality of the evidence driving us toward doing things, and that may change the way we do that balancing.”
For her specific patient, Korenstein explained that her care team is now working to optimize and streamline her care, eliminate unnecessary specialist visits, and coordinate her tests so that they can be administered on the same day. They are carefully weighing the benefits and harms of each intervention, and, most importantly, framing the approach to her care in terms of an honest assessment of her prognosis and the patient’s own goals.
“This is what we should strive to do for all of our patients … it’s a new paradigm for survivor care.”
It won’t be easy, she acknowledged. “While we increasingly know about the risks of complications in these patients related to their initial therapy, there’s not a whole lot of evidence documenting the efficacy of our interventions in this population.”
“Fear and anxiety on the part of both patients and clinicians is a real challenge, and it’s something we need to confront directly.”
Yet despite these challenges, concluded Korenstein, “if we do this right, I think we can help our patients to really live and live well and not just survive.”