National Cancer Survivor Month: Survivorship Research
June is National Cancer Survivor Month in the United States. This is a time to raise awareness of cancer survivors, the issues they face throughout their lifetimes, and advocate for cancer survivorship research. As of 2019, there were 16.9 million cancer survivors in the United States. That number is expected to increase to 22.2 million by 2030.
Due to significant advances in cancer treatment and better patient outcomes, the tangible result of research and clinical trials, more and more people diagnosed with cancer are surviving and living longer than before. According to the National Cancer Institute (NCI), a person is a cancer survivor from diagnosis until the end of their life. This includes both people living with cancer and those who are cancer-free and in remission.
Just a few decades ago, the outlook for individuals diagnosed with cancer was much more negative than it is today. In the 1970s, 1 out of 2 people diagnosed with cancer survived at least 5 years, compared with more than 2 out of 3 people surviving today. The greatest survival rate improvements have been seen in children, adolescents, and young adults.
As people with cancer live longer or even become cancer-free, more research is occurring to better understand specific issues that cancer survivors face and to improve cancer survivors’ quality of life. This has created the relatively new and growing field of cancer survivorship research.
The field of cancer survivorship began taking shape in the 1980s. In 1985, Dr. Fitzhugh Mullan used the term in a publication describing his journey with cancer, titled “Seasons of Survival.” The next year, the National Coalition for Cancer Survivorship (NCCS) was created. At the first NCCS meeting in October 1986, a new definition of “cancer survivor” was created. Prior to this, a cancer survivor referred to someone who had remained cancer-free for five years or more. The NCCS decided this definition was too strict and left out many people facing timely issues as a result of their cancer, such as fertility loss and making informed choices about treatment options. The NCCS proposed that people be referred to as cancer survivors from diagnosis onward.
The cancer survivorship movement continued to grow over the next two decades. In 1996, the Office of Cancer Survivorship was created at the NCI to promote and direct cancer survivorship research to address challenges faced by cancer survivors. The American Cancer Society (ACS) began funding cancer survivorship research and initiated the Study of Cancer Survivors in 2000. This longitudinal study surveyed cancer survivors over 12 years after being diagnosed with cancer to better understand cancer survivors and their quality of life post-diagnosis. Along with these milestones, cancer research organizations made cancer survivorship research a priority at their institutions as well.
As the field of cancer survivorship has grown over time, researchers are better understanding significant issues that cancer survivors face, especially in terms of quality of life and future health outcomes. Some of these issues include cancer recurrence, secondary cancers or other health conditions, long-term treatment side effects, mental health and well-being, economic burden, and more.
While cancer treatments have advanced greatly and can effectively cure or suppress a patient’s cancer, some treatments do not come without cost. Certain treatments can cause long-term side effects and increase a cancer survivor’s risk for future cancers or other health conditions. For example, some types of chemotherapy may cause heart damage. Researchers are working to better understand how this heart damage occurs, as well as finding out whether strategies such as other medications may prevent heart damage without affecting the function and effectiveness of chemotherapy.
Other cancer treatment strategies, such as immunotherapy, are so new that researches don’t know if any long-term effects may exist yet. As a result, the NCI is funding research to follow cancer survivors who have received immunotherapy over time to determine if any late effects exist.
While the term cancer survivor covers all people living with or beyond cancer, not all cancer survivors are the same. There are different areas within cancer survivorship, often focusing on a specific population. One area that has become a focus is childhood cancer survivorship. Due to significant advances in pediatric cancer treatment, 84 percent of children and adolescents treated for cancer will now survive at least five years after diagnosis. These children and adolescents face issues and late effects of cancer treatment that may be different than those adult cancer survivors face, such as accelerated aging, infertility, second cancers, and reduced life expectancy.
The Childhood Cancer Survivor Study (CCSS) began in 1994 to better understand childhood cancer survivors and issues they experience, increase survival, and minimize harmful health effects of cancer treatments. The study included more than 14,000 childhood cancer survivors who were diagnosed between 1970 and 1986, as well as 4,000 siblings for comparison. A second group of 10,000 survivors that were diagnosed between 1978 and 1999 and 1,000 of their siblings were later added as well. The study participants were surveyed and followed over the years to monitor their long-term health outcomes. Potential late effects of childhood cancer that have been found from the study include premature menopause, stroke, and subsequent cancers. Data from the study has also been used in many other childhood cancer survivorship studies as well.
The St. Jude LIFE study was launched in 2007 to learn more about the health of adults who were treated for cancer as children or adolescents. The study also aims to determine the prevalence of late effects, identify predictors of adverse health outcomes, develop risk profiles, and use data to guide screening and interventions. The study aims to follow childhood cancer survivors throughout their lifespan. To date, 4,300 participants have undergone health evaluations as part of the study, such as tracking cardiac, reproductive, neuromuscular, neurocognitive, and psychosocial function.
Cancer survivorship is an evolving field, and research is ongoing to learn about cancer survivors and improve health outcomes for children, adolescents, and adults living with and beyond cancer. The Masonic Cancer Center and M Health Fairview collaborate on the Cancer Survivorship Program. These organizations also put on the Cancer Survivorship Conference each year. To learn more and view survivorship resources, visit survivorship.umn.edu.