At MSK, we’ve long understood that the experience of cancer doesn’t end when treatment does. In 2003, MSK established the Survivorship Initiative — the first of its kind in the nation — to coordinate efforts to provide comprehensive services for survivors of adult-onset cancers. The initiative has now come of age with the recent creation of our Cancer Survivorship Center.
“When a patient completes cancer therapy, that shouldn’t be the end of the story,” asserts Kevin Oeffinger, Director of MSK’s Adult Long-Term Follow-Up Program and the inaugural Director of the Cancer Survivorship Center.
Indeed, the goal of survivorship research and patient care is that with expert surveillance, timely health-preserving interventions, and research into the mechanisms that lead to the long-lasting side effects of treatment, patients who have had cancer — even multiple times — will be able to live long lives with good quality of life.
The National Cancer Institute estimates the number of cancer survivors in the United States to be 14.5 million. By 2020, projections are that the number will swell to 18 million. These are, on one hand, heartening figures — but on the other, they suggest that the need for programs addressing the medical, psychosocial, and life challenges facing survivors and their families will also grow exponentially.
As the preeminent leader in cancer survivorship, MSK created the new Cancer Survivorship Center to bring together a number of already existing initiatives and programs and to provide an infrastructure to support cancer survivorship studies. Under the leadership of Dr. Oeffinger and his colleagues, the center seeks to further transform the field as well as establish standards of care that are already serving as models nationally and internationally.
Oncology nurse Mary McCabe will assume the role of Director of Clinical Programs; Co-Directors for Clinical Care will be surgical oncologist Larissa Temple and a recruit soon to be named for medicine. Pediatric endocrinologist Charles Sklar, Director of the Long-Term Follow-Up Program in the Department of Pediatrics, will serve as Director of Training and Education, and exercise scientist Lee Jones will be Director of Research, with behavioral psychologist Tim Ahles serving as Co-Director.
The History of Cancer Survivorship at MSK
In 2003, Ms. McCabe was recruited from the National Cancer Institute, where she was Deputy Director in the Division of Cancer Treatment and Diagnosis, to lead MSK’s Survivorship Initiative. At the time, there were few clinicians at MSK delivering care for cancer survivors or leading studies to better understand the long-term effects — also called late effects — associated with cancer therapy. Eleven years later, nearly 100 MSK clinicians and researchers are involved in this work.
“Survivorship is now a program of consequence at our institution,” says Ms. McCabe. “The Survivorship Initiative was established to jump-start the effort, with a strong initial focus on clinical services for patients — but always with an eye firmly fixed on our triple mission as a cancer center. We also wanted to grow our research effort and to focus on education and training.”
“From my perspective,” she continues, “the wonderful thing is that we’ve moved from being an initiative with a very small group of committed individuals to the point at which we have a large cadre of clinicians and investigators who spend their professional lives concentrating on the needs and issues of survivors. We have the support and respect of our colleagues and have always had the support and respect of the leadership of MSK — and that, in significant part, is why we have been able to come this far in a relatively short period of time.”
Looking even further back, in 1990, MSK’s Department of Pediatrics established the Long-Term Follow-Up Program, one of the earliest such programs in the nation. Led by Dr. Sklar, who has been working in the field since the 1980s, the program helps children and families navigate and manage the chronic medical conditions often experienced by pediatric cancer survivors.
“Dr. Sklar headed the pioneering effort and developed a wonderful program to monitor the health of these high-risk children and take care of the late effects of their therapy,” says Dr. Oeffinger. “He also led much of the research that helped us understand those risks.”
Dr. Oeffinger’s Adult Long-Term Follow-Up Program provides follow-up care for adults of all ages who were treated for cancer during their childhood, adolescent, or young adult years. “We take over from Dr. Sklar’s program and follow survivors from the age of 18 to, well, age 85-ish or so!” he explains, smiling.Back to top
An Evolution Begins
A number of years ago, Ms. McCabe and Drs. Oeffinger and Sklar began to discuss how they could create a single standard of survivorship care, much the way MSK has standards of care when patients arrive at the institution with new cancer diagnoses. “And not just for our own patients,” Dr. Oeffinger emphasizes, “but a program that could be replicated elsewhere.”
These discussions led the three colleagues to develop clinical care models as well as to foster an active research initiative in areas that now include cardiotoxicity (heart health after cancer treatment); cancer recurrence and/or development of second cancers; fertility preservation and sexual health; neurocognitive dysfunction; and lifestyle interventions, such as smoking cessation.
Subsequent meetings with MSK President and CEO Craig B. Thompson and Memorial Hospital Physician-in-Chief and Chief Medical Officer José Baselga resulted in the creation of an ambitious five-year plan to set the standard of survivorship care not only for MSK but also for the nation — a mainstay of which is the new Cancer Survivorship Center.
“Having a center provides a formal structure in which we can carry out our plans in the clinical, research, and training and education arenas,” says Ms. McCabe. “It incentivizes everybody to work together, signaling that there are opportunities for collaboration and that we are here to act as facilitators.”
“I think Drs. Thompson and Baselga are visionary in this regard,” adds Dr. Oeffinger. “They have a real sense of where survivorship fits institutionally and how what we accomplish here can become a model for other centers.”Back to top
A Time of Transition
In 2013, MSK had approximately 12,000 patient visits to its cancer survivorship clinics. “We are really reaping the rewards of great oncologic care,” says Dr. Oeffinger, “but we only have so many doctors, so many rooms in which to see patients — it’s a wonderful problem to have, but we also need to get new patients in.”
This is where MSK’s survivorship clinics enter the picture: as patients complete treatment and transition from the care of their oncologists to a nurse practitioner (NP) or a physician assistant (PA) skilled in disease-specific follow-up. For patients with adult-onset cancers, a model has been established in which an NP or a PA is embedded within the clinical team.
“The value of having an NP or a PA as part of the team is twofold,” Ms. McCabe explains. “First, team members do not have to ‘give up’ the patients they have been treating and who are doing well, and that gives them a great deal of personal satisfaction. And, for the patients, they don’t have to leave the team that has treated them.”
In fact, patients in follow-up return to the same clinical area in which they received treatment. They are able to see many familiar faces and know that their treating physician is nearby, should that person be needed. Ms. McCabe puts it in direct terms: “Patients do not feel as if they have been cut off from the people who saved their lives.”
The model evolved out of many discussions with MSK clinical staff. “This was not a model we adopted from someplace else,” Ms. McCabe makes clear. “We had a steering committee and a lot of interested physicians, nurses, social workers, and hospital administrators who came together to talk about what might work here.” Several other models were tried “and this is the one that seemed most effective,” she says. “And, as it turns out, it’s desirable not only in the academic medical setting but in private practices as well.”
The first clinics based on the model began in 2006 for lymphoma, thoracic surgery, and prostate surgery patients. Currently, MSK provides follow-up care for survivors of breast, cervical, colorectal, endometrial, esophageal, head and neck, kidney, lung, ovarian, prostate, and thyroid cancers and melanoma, as well as those who have undergone blood and marrow stem cell transplantation.
In addition to the clinics, patients are given a cancer treatment summary and survivorship care plan, a blueprint to navigating post-treatment life. It includes details of their diagnosis and treatment and the potential late effects of the therapies and outlines screening recommendations. The summary can be updated — if, for example, a patient should be treated for a second cancer — and all the information is uploaded to MSK’s patient portal, MyMSK, accessible to patients whenever they need it. This summary serves as an important communication tool between MSK clinicians and the patient’s primary care physician (PCP).
“Just as we treat the individual, not simply the cancer, we approach suvivorship in the same way — we don’t do identical things for all patients,” Dr. Oeffinger says. “There are many patients who complete therapy and their risks are minimal. Our goal for them is to make sure their needs are met and get them back into the community. In fact, we have a formal transition plan for these individuals so they and their PCPs are well prepared. Other patients are at much higher risk and the complexities of their care demand a more intense and comprehensive follow-up. And there are patients who fall in the middle. They have risks that are highest in the years immediately following treatment but that decrease over time. We tailor our survivorship plan to each person and his or her circumstances.”Back to top
To Prevent as Well as to Treat
Although much is known about cancer survivorship, a great deal remains to be learned. The aim of research is to assess the long-term impact of cancer and its treatment in order to allow clinicians to intervene to minimize or prevent the late effects of therapy. However, studies are also revealing why late effects occur in the first place and are helping clinicians to develop ways to decrease the toxicity of therapy so that the day will come when many of the problems can be avoided altogether.
There are numerous investigations ongoing at MSK involving physician-scientists from across the institution. These include a study of how best to detect the early signs of heart disease in survivors of Hodgkin lymphoma, a result of radiation to the chest and the chemotherapy used in treatment, and studies being done by Dr. Ahles that focus on how to treat or prevent the cognitive changes associated with chemotherapy for breast cancer.
Another evolving area of research centers around the preservation of fertility in patients who are in their childbearing years as well as how to assist men and women whose fertility has been compromised by cancer therapy.
“We’re also doing really exciting studies investigating the effects and underlying mechanisms of how targeted, individualized exercise training might prevent tumor progression and metastasis and alter response to cancer therapies, as well as prevent and treat late effects,” Dr. Oeffinger says. Dr. Jones is directing that area of research.
Beyond the institution, MSK clinicians have collaborations with colleagues around the United States and the world.Back to top
The Next Ten Years
An MSK survivorship fellowship in pediatrics already exists, and one of the goals of the Cancer Survivorship Center in the coming years is to create a new fellowship designed to train physicians, scientists, and nurse PhDs in research and the care of survivors of adult-onset cancers. A fellowship in fertility and sexual function is also planned.
“We have gone from being an initiative in 2003 to a center that today is truly transinstitutional and transdisciplinary,” Dr. Oeffinger concludes. “Our goal now is to seed and to fertilize — and then to support growth across all areas and at all levels.”
“We have a tremendous opportunity to develop and evaluate our clinical programs in a way that not only contributes to the care that our survivors receive but also helps determine standards for how oncology care is provided in the future,” Ms. McCabe adds. “We have worked hard to achieve a certain set of goals during this first decade and have identified a very ambitious set of goals for the next ten years. It’s an exciting time to be at Memorial Sloan Kettering and to be doing this work.”Back to top