In 2003, Mary McCabe was recruited to lead Memorial Sloan Kettering Cancer Center’s Cancer Survivorship Initiative and since that time has worked to develop a comprehensive program for cancer survivors, which includes follow-up care, research, and education and training. She also chairs Memorial Sloan Kettering’s Ethics Committee. An oncology nurse, Ms. McCabe previously served as Director of Education and Special Initiatives at the National Cancer Institute.
When I arrived at Memorial Sloan Kettering, there really weren’t any cancer centers that provided comprehensive services for survivors across all age groups. Memorial Sloan Kettering’s Post-Treatment Resource Program (as of 2011 called the Resources for Life After Cancer Program) had for the previous 15 years provided resources for patients, including lectures and support groups — and still does today. And the Center already offered an excellent pediatric long-term follow-up program. However (Memorial Sloan Kettering Physician-in-Chief) Robert Wittes recognized the importance of establishing a survivorship program for patients treated for adult-onset cancers. He asked me to come help set one up here. The opportunity to develop a program with medical, psychological, and informational components, along with a robust research agenda, was very appealing. I also knew the excellence of Memorial Sloan Kettering and was certain it would be possible to build a program that could become a national model.
I began by having many discussions with staff throughout the institution. I also relied on a multidisciplinary steering committee of physicians, nurses, hospital administrators, and social workers for direction, input, and program planning. We knew that many patients — and even healthcare providers whose primary focus is not cancer — don’t quite understand the long-term and late effects of treatment. So we recognized that we had an educational role to play. Another key idea was to offer training to physicians and nurse practitioners in survivorship care and research. And to help establish a vibrant research program, we recruited Kevin Oeffinger — a physician with expertise in caring for young adult survivors of childhood cancers — to direct our Adult Long-Term Follow-Up Program. In addition, I spent time talking to patients and families about which services were important to them and which services they wished they had, during either treatment or the post-treatment period.
We began with an ambitious agenda and decided to implement it step-by-step: trying pilot programs, assessing them, revising, and then moving to the next phase. Ultimately, the model of care we developed for patients treated for adult-onset cancers is that of survivorship clinics led by nurse practitioners. Besides monitoring for cancer recurrence in patients who have completed treatment, these clinics focus on the identification, prevention, and control of the long-term and late effects associated with treatment, screening for second cancers, health-promotion interventions such as diet, exercise, and smoking cessation, and communication with a patient’s primary care physician. At Memorial Sloan Kettering, there are currently clinics for survivors of bone marrow transplant, and breast, colorectal, thyroid, thoracic, and urologic cancers. And we are now launching them at our regional sites.
One of the most significant aspects of the clinics is that they are not in a separate location; they’re not freestanding. Rather, the nurse practitioners work alongside the patient’s original doctors and nurses. This extends the continuum of care to the post-treatment period and offers patients and families an ongoing relationship with their treatment teams. I’m pleased to say it’s a model that is being adopted around the country.
However, we’re still evolving. We’re trying to evaluate and refine which services are needed by which patients, and when. Ultimately, I’d like to see us take a risk-based approach to follow-up care. We don’t necessarily have to follow everyone the same way. With the changes we anticipate are coming as a result of the Affordable Care Act, we need to have a high-quality — and an efficient — set of services. We have to determine which survivors need our time and attention for extended periods and which can go on to be cared for by their primary care physicians.
Of course, I don’t do any of this alone. Dr. Oeffinger and Charles Sklar (Director of the Long-Term Follow-Up Program in the Department of Pediatrics) provide key leadership for the entire program, as do the clinicians we work with every day.
Although Memorial Sloan Kettering has extensive services available for our survivors, when I talked to patients early on, two issues kept coming up: the need for a fertility preservation program and a sexual health program. Cancer and its treatment can have an impact on sexual health. Fertility may also be compromised. Therefore, we developed a Sexual Health Program for men and women, which is thriving. And in 2009, we established Fertility Preservation and Parenthood After Cancer Treatment. One of the program’s goals is to ensure that younger patients starting cancer treatment receive information about fertility preservation early enough to allow them to explore their options if they wish.
I also have a longstanding interest in bioethics. When I worked at the National Cancer Institute, I spent one day a week in the National Institutes of Health’s Department of Bioethics. When I arrived here, I wanted to continue that work, and was able to become a member of Memorial Sloan Kettering’s Ethics Committee. When the previous chair stepped down, Dr. Wittes asked if I would become the chair.
In the intervening years, I’ve worked to make the committee, and in particular the consult service, a more active and important resource for our clinical staff and patients. We are now spending more time not just doing consults when problems arise, but developing educational services and staff forums so that we can discuss and analyze cases and help prevent problems that may arise in the course of caring for patients.
Much of the Ethics Committee’s work is with patients who are at the end of life. Working with both the Survivorship Initiative and the Ethics Committee gives me a view across the field of oncology. We have many successes treating patients with cancer. However, I’m also reminded of those who will die of their disease, and the help they and their caregivers need. I have been given a unique opportunity to be able to be involved in the totality of oncology care, able to think not only about how people live their lives after cancer treatment but how well they live, regardless of the length of life.