Partners on the Journey
by Douglas R. Lowy, MD, acting director of the National Cancer Institute
Over the last few years, I’ve had the great privilege of visiting a variety of NCI-designated Cancer Centers and talking with various stakeholder groups across the country. While meeting with oncologists and researchers takes up most of my time, the highlight is always my interactions with patients. I am especially moved by the willingness of so many to take part in clinical trials – to become partners on our research journey – all in the hope that others won’t have to experience what they are going through. Their courage is a humbling reminder of the experiences of all cancer survivors and the reason why we do what we do every day at the National Cancer Institute.
Having spent my entire career working to better understand the biology of cancer and how tumors develop and progress, I am greatly encouraged by the upward trend in cancer survival rates. In the last quarter century, the number of cancer survivors in the United States has more than doubled – from 7 million in 1992 to over 15 million in 2016 – and is expected to rise to over 26 million by 2040.
Growing Survivor Population
Fifty years ago, we knew much less about cancer, and a diagnosis was often perceived by many as a death sentence. So, to what can we attribute the doubling of the number of survivors over the last 25 years?
NCI’s decades-long investment in basic biological research is a critical component of the continued progress against cancer that we are seeing. Our deeper understanding of the disease’s complexities has led to new therapeutic approaches that are being applied to a broad spectrum of cancers and improving life expectancy. Even some of the most previously difficult-to-treat cancers are showing some response to recent advances in precision medicine and
Earlier detection is another reason for the rising number of survivors. Increased rates of screening for colorectal and breast cancer have contributed to diagnosing these cancers at an earlier stage, when they are typically more treatable. Individuals diagnosed with these common cancers can typically live for many years after an early diagnosis, and some are cured. NCI has made significant investments in research over many decades to improve early detection. Still, we must do more to better understand how we can increase uptake of screening, especially among underserved populations, so that we can detect more cancers early and detect precancerous lesions that can be treated before they even become cancer.
The rising number of survivors is certainly cause for optimism, but the bottom line is, success involves more than just numbers; quality of survivors’ lives matters deeply.
A Focus on Quality of Life
The rising number of survivors is certainly cause for optimism, but the bottom line is, success involves more than just numbers; quality of survivors’ lives matters deeply. Cancer has the capacity to profoundly affect many aspects of an individual’s life, including the physical, psychosocial, socio-economic, and spiritual.
The importance of quality of life is particularly evident among survivors of childhood cancer. Because those who survive a cancer diagnosed in childhood live much longer, on average, than those who survive a cancer diagnosed in adulthood, they may face many more years of dealing with serious long-term health issues and problems later in life because of cancer and its treatment, including an increased risk of second cancers. Efforts to reduce the number of children treated with radiation, as well as changes in treatment protocols that have lowered radiation doses, have paid off in terms of reducing the risk of developing second cancers and helping survivors live longer, healthier lives. It is essential to learn more about which survivors are at greater risk for developing late effects and to find more-effective, targeted, and less-toxic treatments so that survivors can look forward to a good quality of life after their cancers have been treated.
NCI’s portfolio of survivorship research continues to broaden in recognition of the growing number of cancer survivors and the need to develop a better understanding of the problems that survivors face, as well as the means to address these problems. Increasingly, researchers are recognizing the value of incorporating survivors’ input in studies designed to improve oncology care. One area of focus, emanating from a recommendation of the Cancer MoonshotSM Blue Ribbon Panel, is greater engagement of patients in the development of guidelines for reporting side effects of cancer treatment and quality-of-life measures, with the goals of minimizing debilitating side effects, helping patients stay on their drug regimens, and improving their day-to-day lives.
In the last quarter century, the number of cancer survivors in the United States has more than doubled – from 7 million in 1992 to over 15 million in 2016 – and is expected to rise to over 26 million by 2040.
As the number of cancer survivors increases, so too does the number of informal caregivers – family members and friends who provide care for loved ones diagnosed with cancer. NCI funds research into innovative ways to enhance support for informal caregivers’ unique needs. Funded interventions are intended to provide caregivers with healthcare training, promote coping skills, and, ultimately, help them better manage the care of their loved ones.
Partners on the Journey
It was approximately 20 years ago that the field of cancer survivorship began to gain the attention of researchers and policymakers, as it was becoming increasingly clear that cancer care needed to evolve to meet the emerging needs of a growing survivor population. It was then that NCI established the Office of Cancer Survivorship to provide a hub for the direction and support of research dedicated to understanding the survivorship experience and enhancing the quality of life of survivors. Today, survivorship has gained widespread recognition as an essential component of the cancer control continuum and has matured into a broad research field.
Here in the United States, survivors have stepped forward with a collective voice that has been and continues to be very powerful in raising the level of public attention to cancer and survivorship, and advocating for greater resources to be put toward cancer research and care. Indeed, we cannot underestimate the survivor community’s crucial partnership role on this journey of advancing the U.S. national cancer enterprise. Together, we can and will do more to reach our common goal of helping people live longer, healthier lives.
Since 1994, the National Cancer Institute has written an exclusive annual report for Coping’s July/August Celebration issue.
This article was published in Coping® with Cancer magazine, July/August 2017.