NCI’s Office of Cancer Survivorship: Celebrating 20 Years, Planning for Continued Progress

November 17, 2016, by Julia Rowland, Ph.D.

This year marks an important milestone for the cancer community: the 20th anniversary of NCI’s Office of Cancer Survivorship (OCS). I’ve been privileged to be the director of the OCS for 17 years, and every day I continue to be amazed by the progress we’ve made in advancing survivorship research over such a short period.

Established by NCI in 1996 as a result of an executive order signed by President Clinton, the office was created in recognition of the growing number of cancer survivors and the need for more research to better understand and meet their unique needs.

The creation of the OCS, and the cancer survivorship field in general, would not have happened if it weren’t for the strong and persistent voices of advocates. Over the past two decades, we have witnessed the tremendous growth in and widespread recognition of the importance of survivorship research and care. And thanks to the efforts of many dedicated researchers and clinicians, survivorship is now fully established as a distinct and essential component of the cancer control continuum.

Understanding the Issues, Making a Difference

Part and parcel of recognizing the importance of survivorship research is the burgeoning number of talented investigators working in the field. With the aid of new research tools, these investigators are focusing on how to further elevate our understanding of the issues and challenges that face cancer survivors and their families after treatment ends, and how to better meet their needs and ensure that survivors can enjoy full, productive lives.

NCI’s significant investments over many decades to improve cancer prevention, screening, early detection, and treatment, as well as to develop approaches to optimal supportive care, have resulted in an exponential increase in the number of cancer survivors, from 8.4 million in 1996 to an estimated 15.5 million today. A person is considered a cancer survivor from the time of diagnosis through the rest of his or her life. A recent NCI report estimated that there will be 26.1 million cancer survivors by 2040, largely due to the aging of the baby boomer generation, a projection aptly termed the “silver tsunami.”

As anybody who has undergone cancer treatment or their loved ones can tell you, the consequences of cancer do not end with the last dose of therapy. Cancer survivors can face numerous short-term and long-term effects, including physical, psychosocial, and socioeconomic concerns, as well as “late effects,” which can appear months or years after treatment has ended.

NCI-supported research has demonstrated that quality and evidence-based post-treatment care—which can be influenced by models of care, access to care, and the development and implementation of a survivorship care plan—does make a difference, and that we can improve health-related outcomes and quality of life for cancer survivors.

Robust Research, Strong Collaborations

NCI continues to support a broad portfolio of cancer survivorship research aimed at improving the health and quality of life of cancer survivors. For example, the institute is supporting research to minimize the risk of cardiovascular side effects during and after cancer treatment, to assess physical activity and weight control interventions among cancer survivors, to address cancer-related anxiety and depression in survivors and their loved ones, and on other topics related to quality of life.

One of the most powerful NCI-supported research efforts for tracking the needs and health of survivors is the Childhood Cancer Survivorship Study (CCSS). Funding for this long-running study, in fact, was renewed just this week.

The CCSS has provided many important insights into the effects of cancer and cancer therapies on survivors of childhood cancer, in particular late-effects and their impact on quality of life. In so doing, the study has helped the research community focus its efforts on decreasing treatment toxicities while maintaining efficacy and better monitoring the long-term health and needs of childhood cancer survivors.

NCI also tracks survivorship trends through its Surveillance, Epidemiology, and End Results (SEER) program. SEER generates data that is used by many researchers, public health officials, and others in the cancer community to evaluate cancer prevention and screening programs and the quality of cancer care, document racial and gender disparities, demonstrate the effectiveness of public health interventions, and guide the translation of research into health policy and practice.

Much of the progress in cancer survivorship has been forged through long-lasting and innovative collaborations. Over the past 20 years, the OCS has been a vital force in bringing together researchers, clinicians, and advocates to discuss advances and take the necessary next steps in cancer survivorship.

From 2003 to 2012, for example, NCI cosponsored the CancerCare Cancer Survivorship Telephone Workshop Series, along with LiveSTRONG, the American Cancer Society, Living Beyond Breast Cancer, and the National Coalition for Cancer Survivorship. This free series, which offered cancer survivors, their families, friends, and health care professionals access to cutting-edge research findings coupled with practical information on how to cope with the issues that arise after treatment ends, drew more than 3,000 callers to each session.

And since 2002, NCI, the American Cancer Society, LiveSTRONG, and the Centers for Disease Control and Prevention have cosponsored the Biennial Cancer Survivorship Research Conference. This meeting brings together more than 500 international researchers, clinicians, cancer survivors, advocates, policymakers, and public health experts to share and learn about the most up-to-date cancer survivorship research and to foster interdisciplinary partnerships to address ongoing research questions.

Addressing Survivors' and Caregivers' Needs

As the most recent survivorship conferences and studies have demonstrated, an emerging area of survivorship research focus is informal cancer caregiving. As the number of cancer survivors grows, so too does the number of informal cancer caregivers—people, often close family members and friends, who provide care for their loved ones after they are diagnosed with cancer.

NCI currently has research funding opportunities aimed at improving support for caregivers of cancer patients. Funded interventions are intended to provide caregivers with care training, promote coping skills, and ultimately help them better manage the care of their loved ones.

Another area of emerging research is older cancer survivors. Although we know that there will be a large increase in the number of older cancer survivors, there is a vast gap in our knowledge of the effects of cancer and its treatment on this patient group, who are more likely than younger patients to have other health conditions, such as diabetes, hypertension, and heart disease.

The rising number of older cancer survivors will bring new challenges related to health care utilization and access, and learning more about the health effects of cancer and cancer therapy on older survivors will be critical to helping the health care system understand and prepare to meet their health needs.

There is rightfully a great deal of optimism about the future of cancer research and the prospect of developing safer, more effective therapies for patients with all types of cancer. My belief is that, in parallel with these advances, we can continue to make great strides toward ensuring that being a cancer survivor does not entail having to trade one life-threatening illness for another or sacrifice one’s quality of life.

We’ve accomplished a great deal in our first two decades, and I’m confident that we can achieve even more for cancer survivors over the next two.