As we detailed in our Special Report “Surviving, but Not Always Thriving, After Cancer,” in the May 25, 2023, issue of The ASCO Post, the combination of advances in more effective therapies to treat cancer, gains in early detection, and sharp declines in tobacco use have led to a staggering 33% reduction in overall cancer mortality since 1991, averting an estimated 3.8 million deaths.1 The result is that today, there are more than 18 million cancer survivors—and that number is expected to top 26 million by 2040.2 However, most of those survivors—at least two-thirds—either cured or in remission or living with metastatic disease will have ongoing physical, psychological, and supportive care needs that are not well managed and might not be recognized by current models of cancer care.3
Financial hardship is another growing devastating side effect of the disease. A recent health-care debt survey conducted by the Kaiser Family Foundation (KFF) found that about two-thirds of adult cancer survivors with health-care debt have had to cut spending on food, clothing, or other household basics. In addition, about one in four has had to declare bankruptcy or lost a home to eviction or foreclosure.4 Even more alarming is research showing that survivors with severe financial distress who declare bankruptcy are nearly 80% more likely to die than patients who do not file for bankruptcy.5
Addressing the Ongoing Needs of Cancer Survivors
Care for cancer survivors remains complex and fragmented. Research has shown that the current models of survivorship care often fail to meet the physical, psychosocial, and informational needs of cancer survivors. The reason is largely because of a health-care system in which coordination and communication among different medical specialties are challenging, often resulting in delays in treatment, prevention, and surveillance for both cancer recurrences and new cancers.6
To help close the gaps in coordination of care for this population, in 2021, several leaders in the field of cancer survivorship, including Lidia Schapira, MD, FASCO, Professor of Medicine-Oncology at Stanford University School of Medicine and Director of the Cancer Survivorship Program at Stanford Cancer Institute, launched the Cancer Center Survivorship Research Forum (https://ccsrf.umn.edu), which is hosted by different cancer centers on a rotating basis. This year’s hybrid meeting of the Cancer Center Survivorship Research Forum: Implementing Equitable Cancer Survivorship Care, will be held on September 11–12, 2023, on the Stanford University campus and virtually.
“I view the survivorship field as providing cancer survivors with greater knowledge of the potential late effects of their treatment and better models of coordinated survivorship care.”— LIDIA SCHAPIRA, MD, FASCO
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The meeting, according to Dr. Schapira, will focus on cutting-edge research, roundtable discussions, and breakout sessions addressing the concerns of cancer survivors—including cognitive problems, sexual health and fertility, fear of recurrence, and late effects from cancer therapy—and potential solutions. In addition to researchers in epidemiology and medicine, the symposium is intended for primary care providers and medical specialists interested in learning more about the ongoing needs of cancer survivors.
The ASCO Post talked with Dr. Schapira about the evolving field of cancer survivorship and research, the looming oncology and primary care workforce shortage, and how to bring together specialists from diverse fields to solve the short- and long-term impacts of cancer and its treatment on cancer survivors.
Recognizing the Late Health Consequences of Cancer
Please talk about the research in cancer survivorship that is currently underway.
The research in this area can be separated into different buckets. One bucket includes rigorous research on the late effects of cancer treatment. Those of us in the field of survivorship research define these late effects as those that appear years to decades after treatment ends. For example, the new class of immunotherapy drugs, which are so effective against cancer, can wreak havoc on all organs and may affect the health of cancer survivors permanently. We are just beginning to understand the impact of these agents on a person’s future health.
Another example focuses on the late effects a young adult might have from radiation therapy for Hodgkin lymphoma, including heart or lung disease, decades later. It took many years for clinicians and researchers to connect radiation therapy with damage to the heart, but now we know about these late consequences of cancer treatment. We owe it to cancer survivors to research the late effects and try to prevent them in the future.
But to do so, we need to understand what we are looking for, which is why this area of research is so important. The oncology community is rising to the challenge, especially in cardio-oncology to reduce the side effects of cancer-related cardiovascular disease. We have cardiologists and oncologists working together both nationally and internationally, and what is so exciting is that research has gone from defining the syndromes of the disease and spotting who is at risk for cardiotoxicity to preventive cardio-oncology. The success of the field of -cardio-oncology could serve as a model for other areas in survivorship research.
Another bucket is a burgeoning area of study in behavioral research and how we can affect the lived experience and long-term quality of life of cancer survivors after treatment ends. We are seeing the emergence of multidisciplinary collaboration from providers with a behavioral science background to provide the tools and resources both newly diagnosed patients and those approaching the end of active treatment need to handle their health care and manage their lives after cancer. The intention of these interventions is to enable self-management of future health concerns.
A third bucket of active research is in the development of models of care. We meant well after the Institute of Medicine report “From Cancer Patient to Cancer Survivor: Lost in Transition” was published, but we have not solved the problem of how to coordinate care after cancer, which was mostly defined between oncology and primary care providers. However, the survivorship care coordination must be broader than that. It must involve generalists and specialists as well.
I view the survivorship field as providing cancer survivors with greater knowledge of the potential late effects of their treatment and better models of coordinated survivorship care. These tools help individuals to manage their care and advocate for themselves to achieve improved quality of life.
Developing a Model of Coordinated Care
There is an oncology workforce shortage, which is expected to increase over the next 5 to 10 years. There is also a primary care physician shortage, and many primary care physicians are uncomfortable in cancer surveillance and in managing treatment-related effects.7 So, who will take care of the increasing numbers of cancer survivors?
This problem is very much on my mind. The roles within the cancer team must shift. We must bring in more trained people who can attend to the needs of cancer survivors and determine who needs to be part of that team. We must use the skills of oncology and primary care providers where they will have the greatest impact on survivorship care. Perhaps we can bring in nurse coaches, who could deliver interventions that address behavioral issues and promote a healthy lifestyle, as well as trained peer navigators, who could provide additional support and guide cancer survivors in navigating the health-care system.
If we had a clearer picture of what the long-term needs are of cancer survivors, and could do a proper assessment of those needs, we might be able to provide risk-stratified pathways to align services with the evolving health status of these individuals and help them navigate coordinated care. For example, on the oncology side, nurse practitioners could direct survivorship care with assistance from other team members. And on the primary care side, we could invest in educating providers on the needs of cancer survivors, so they are better prepared and less reluctant to care for them.
Efforts are underway to determine whether we introduce survivorship care in medical school and during residency; this care could be normalized the way it is for HIV/AIDS survivors or cardiac transplant patients, who have complex health management issues but who are not segregated or pushed aside. This is where we as a community and professional societies such as ASCO can have a great impact on producing curriculum that integrates survivorship care in medical school and then providing opportunities for postgraduate training and creating fellowships in this field.
Closing the Gaps in Survivorship Care
At your upcoming Cancer Center Survivorship Research Forum in September, you will discuss gaps in knowledge in cancer survivorship, specifically as they relate to accelerated aging and chronic disease. How does cancer and its treatment affect these conditions?
There is rigorous research that links specific exposure to cancer treatment and accelerated aging, including secondary cancers, frailty, cognitive impairment, and chronic organ dysfunction. This is of special importance to adolescent and young adult cancer survivors and to adult survivors of childhood cancers, who need to be cared for by providers who understand that at age 30, their risk for cardiovascular disease is not that of a peer but that of someone several decades older.
The sad news about many cancer therapies is they have an impact on organ reserve both cellularly and molecularly. We want to bring together scientists involved in this research and give this area attention.
Putting Multidisciplinary Specialists on the Front Lines With Oncologists
Is there interest by primary care physicians and medical specialists in other diseases to learn about the issues cancer survivors face long term and in treating them?
Yes, there absolutely is. What will flip the field of cancer survivorship and make it more attractive as an area of concentration and research for those in different disciplines is to create excitement about the opportunity to figure out how to treat complications from treatment, including the newer immunotherapies and cellular therapies.
For instance, endocrinologists have developed expertise in following cancer survivors who have had endocrine-related cancer or a cancer that has produced endocrine problems. We must bring in providers from different specialties to help patients treated with chimeric antigen receptor T-cell therapy, for example, and have developed cytokine-release syndrome or other problems.
We need specialists from different disciplines to be on the front lines with us, or the problem is not going to be solved. The model of care that my generation grew up with is that cancer is an emergency. We will deal with the disease now and the consequences later. We have now turned that model on its head, because, today, the chances are good that patients will survive cancer, but at the cost of experiencing long-term health risks based on the treatments we choose. For instance, we need to think about how a specific treatment will impact a patient’s future fertility, chances of a second malignancy, or financial security. In some cases, we still need to act emergently, but in most situations, we can try to incorporate these considerations into treatment planning and supportive therapy soon after diagnosis to improve overall health outcomes, not just to cure cancer.
During our conference, we have a separate session dealing with practical information for physicians who are delivering survivorship care for issues such as cognitive complications and sexual health and the integration of primary care into survivorship care.
At Stanford, we are continuing to invest in educating health professionals to better care for cancer survivors by offering a 15-episode podcast, Health After Cancer (https://healthaftercancer.stanford.edu). This podcast covers such topics as mental health, fear of cancer recurrence, relationships, parenting a cancer survivor, relating to a new body, and care transitions for adult survivors of childhood cancer. It is our way of making survivorship care accessible to more people and making it comfortable for primary care physicians to provide that care.
DISCLOSURE: Dr. Schapira has served as an advisor to Blue Note Therapeutics and is a consultant for Novartis.
1. Siegel RL, Miller KD, Wagle NS, et al: Cancer statistics, 2023. CA Cancer J Clin 73:17-48, 2023.
2. National Cancer Institute, Division of Cancer Control & Population Sciences: Statistics and Graphs. Available at https://cancercontrol.cancer.gov/ocs/statistics. Accessed July 21, 2023.
3. Cancer care: Beyond survival. Editorial. Lancet 399:1441, 2022.
4. Levey NN: In America, Cancer Patients Endure Debt on Top of Disease. KFF Health News. July 9, 2022. Available at kffhealthnews.org/news/article/in-america-cancer-patients-endure-debt-on-top-of-disease/#:~:text=Nationwide%2C%20about%201%20in%205,to%20ever%20pay%20them%20off. Accessed July 21, 2023.
5. Ramsey SD, Bansal A, Fedorenko CR, et al: Financial insolvency as a risk factor for early mortality among patients with cancer. J Clin Oncol 34:980-986, 2016.
6. Love M, Debay M, Hudley AC, et al: Cancer survivors, oncology, and primary care perspectives on survivorship care: An integrative review. J Prim Care Community Health 13:21501319221105248, 2022.
7. Nekhlyudov L, Snow C, Knelson LP, et al: Primary care providers’ comfort in caring for cancer survivors: Implications for risk-stratified care. Pediatr Blood Cancer 70:e30174, 2023.
Survivorship in Oncology explores the evolving field of cancer survivorship. The column examines and addresses the problems and challenges cancer survivors face in both the short and long term after cancer and the research underway to improve their quality of life.