By Jane Lock
Dr. Julia Rowland, Ph.D., is currently Director of the National Cancer Institute (NCI)’s Office of Cancer Survivorship. As a clinician and researcher, Dr. Rowland has been a pioneer in the emerging field of psycho-oncology and cancer survivorship research. After receiving her Ph.D. in developmental psychology from Columbia University, she trained in psycho-oncology at Memorial Sloan-Kettering Cancer Center,where she held joint appointments in the Departments of Neurology and Pediatrics, and later became the first Director of the Post-Treatment Resource Program. Prior to her appointment as Director of the Office of Cancer Survivorship at NCI, she was the founding Director of the Psycho-Oncology Program at the Lombardi Cancer Center at Georgetown University. Dr. Rowland’s research focuses on pediatric and adult cancer survivorship, and her work has been published widely in the psycho-oncology field.
In her recent article, “Cancer Survivorship Research in Europe and the United States: Where Have We Been, Where Are We Going, and What Can We Learn From Each Other?” (http://dx.doi.org/10.1002/cncr.28060) Dr. Rowland and her colleagues provide a detailed review and comparison of the field of cancer survivorship in the US and Europe. The article looks at the accomplishments and challenges in survivorship research, and calls for international collaborations and research effort. As the population of cancer survivors increases worldwide, Rowland’s research serves to increase awareness of the psychosocial well-being of cancer survivors and to galvanize future advancements in this field.
What spurred your interest in studying cancer survivorship?
If you had asked me in graduate school what I thought I would be pursuing for a career, I would never have imagined it would be exploring the evolving world of cancer survivorship. I happened to take an elective course at Columbia University, where I was working on my PhD in Developmental Psychology, that was taught by a visiting Harvard-trained professor interested in psychosomatic disorders, job demands and worker stress. In preparing a paper for this course, I stumbled upon the early literature searching for a mind-body link in cancer, a “Type C” or cancer personality. (And no, I do not believe there is a ‘Type C” personality. I have learned that cancer is an incredible equalizer, touching the lives of all kinds of people representing all manner of backgrounds, races, ethnicities, beliefs, ages, and resources.) Learning of my interests, my professor said I might be interested in reaching out to a physician who was doing a large, federally funded study of the psychological adaptation of women diagnosed and treated for breast cancer. That physician turned out to be Dr. Jimmie Holland, whom many of us consider the founder of the field of psycho-oncology. As a developmental psychologist, I was particularly intrigued by the influence that timing, or when in the course of an individual’s life cancer occurred, has on survivors’ health and function and long-term well-being. In looking back, I realize that I was incredibly fortunate to have been part of the birth of a field, psycho-oncology, and, over the course of my career, to have been able to contribute to and champion the emerging field of cancer survivorship science.
How do you think cancer survivorship is perceived by the public right now? How do you think these perceptions will change as more research is done on cancer survivorship?
Public attitudes about cancer have shifted dramatically in the United States over the past few decades. Once considered a death sentence and rarely referred to in public, cancer is now more widely seen as an illness one can in fact survive. This change in viewpoint is the consequence of advances in and broader uptake of early detection, multimodal cancer therapy, and better supportive care that, combined, have led to cancer becoming a chronic illness for many and curable for increasing numbers of individuals. Current figures tell us that there are almost 14 million cancer survivors in the US alone, and, while figures are not available regarding the total number of cancer survivors worldwide, we do know that almost 29 million people around the world have survived at least 5 years after their cancer diagnosis.
Of US survivors, 64% were diagnosed 5 years ago, 40% have survived 10 or more years, and an impressive 15% were diagnosed 20 years ago or more. People can now live a lifetime with a cancer history.
Paralleling the scientific advances in our understanding of the nature, detection and treatment of cancer, we were fortunate to have incredible public advocacy. The willingness of so many Americans to speak openly about their experience with cancer has enabled us to have frank discussions about what it is like to live with this history, and what we need to be doing to promote quality of life after cancer. Their collective voice quite literally changed the dialogue about cancer and gave us the ‘language’ of survivorship. It was advocates who helped create the Office of Cancer Survivorship at the National Cancer Institute, which I have the privilege to direct.
As we learn more about the survivorship experience from those living with, through and beyond this disease, we are becoming more acutely aware that it is not enough to cure or control cancer. We must also attend to the human and social cost of this care. Successful outcomes will be those that not only increase length of survival but also attend to quality of life. Looking to the future, we are going to see growing efforts to find targeted and tailored cancer therapies that have the best chance of curing the illness, with the least toxicity to the survivor. To be effective, these will need to be designed and delivered in partnerships between cancer clinicians and their patients/survivors and family members. Having a good understanding of what might be the possible long-term and late effects of any given treatment course, and how these might be avoided or mitigated, will be important to the decision-making process.
Increasing efforts have been made to establish cancer care in low- and middle-income countries where cancer has become one of the leading causes of death and disability. Looking ahead, how do you envision cancer survivorship research being applied to low- and middle-income countries?
Before significant attention can be paid to cancer survivorship outcomes, a country needs to have survivors. Arguably, if the 5-year survival rates are less than 50% for a given country, the case for some of the low- to middle-income nations, resources may be better spent trying to improve access to earlier detection and delivery of effective cancer therapies, along with providing outstanding palliative care, than working on a survivorship program. That said, many of these countries can benefit from the presence of cancer survivors who are ready to work locally to change the ‘face’ of survivorship in their respective nations. In my experience, hearing a survivor tell his or her story of surmounting illness is one of the most powerful ways to inspire others at all levels, from peers right up to national leaders and policy makers, to commit to improving the care of all those facing cancer.
- What lessons from the US and Europe are most applicable to these countries and their health settings?
Two important messages come to mind in sharing lessons learned with low- to middle-income countries. First, as noted above, is the power of advocacy. Some of the real successes in securing funding and other resources for cancer breakthroughs and the development of outreach programs in the US have come from public demand for this attention, demand often led by small numbers of incredibly dedicated and, at times, dogged champions. In most nations, it is difficult to find survivors to speak out about cancer. Indeed, in listening to survivors at a recent international conference, many were surprised to learn that there were others like themselves living in nearby communities. With a burgeoning world of social media, I hope that we can eliminate these barriers and share knowledge and connection.Second, there must be organized political will behind change. In both the US and Europe, national attention to cancer has been pivotal to directing healthcare resources to these illnesses. The resulting support has led to advancements in cancer prevention, detection, diagnosis, treatment, and survivorship. Of course, ongoing, sustained investment is necessary to further progress in the understanding of cancer and in the delivery of advances to those who could benefit from them.
- What challenges would you anticipate in translating this research to low or middle-income settings?
At a recent meeting led by the Breast Global Health Initiative, cancer experts from multidisciplinary backgrounds representing a number of countries came together to try to develop guidelines for what should be available for women’s care, depending on the resources available in a given country. Remarkable to me, in that effort, was the realization that there is a great deal that can be done, even when monies are limited. Much of this builds on local programs (e.g., community healthcare settings and staff), education that can be readily shared, and low-cost treatments.The biggest challenge to translating research globally is the competition for scarce resources.
A lot of your work has particularly been focused on the psychological care of cancer patients. What challenges have you faced in trying to incorporate the psychosocial aspects of care for cancer patients and survivors?
Because for so long cancer was viewed as largely fatal, much of the psychological care provided focused primarily on helping patients die of cancer, not live with their disease. The ‘survivors’ in this earlier period were the grieving family members. As this grim picture slowly turned around, often at the price of very demanding and intensive therapies, patients – along with their physicians – were simply glad they were alive. This attitude proved to be a significant barrier to psychosocial care. Many survivors reported that when they asked for help with the emotional fall-out of their cancer and its treatment, their worries were dismissed and they were told they should be grateful and get on with their lives. It is only as we have studied now thousands of survivors that we realize that cancer is not ‘over’ when it is over; cancer has the capacity to affect all aspects of survivors’ lives, effects that can have profound and lasting import on their psychological and social health. Some of the key barriers to successful incorporation of psychosocial care include: lack of awareness of need (on the part of both survivors and their healthcare providers), inadequate knowledge of what can be done to address given problems, limited availability of staff and time needed to assess problems, cost of delivery of high-quality psychosocial care, and lack of access to resources. Because resources are already so constrained in low- and middle-income countries, it is possible that lower-cost services such as survivor and family education, and peer support/counseling and lifestyle modification, all directed at improving psychological quality of life and self-management, may end up growing more quickly than the technical advances in care (e.g., delivery of expensive chemotherapeutic agents, use of genetic testing, breast reconstruction). This could have the effect of advancing the psychosocial well-being of cancer survivors globally, even beyond what has been seen in more developed nations.
You have been a pioneer in the emergent fields of psychosocial oncology and cancer survivorship. What advice do you have for medical students interested in these fields?
Come join us! There has never been a more exciting time to enter and work in the fields of psychosocial oncology and cancer survivorship. With the aging of the world’s populations, and better control for infectious diseases, cancer and the growing population of cancer survivors are going to become major health challenges faced worldwide.