Surviving, but Not Always Thriving, After Cancer
Part 1: Physical, Psychological, and Financial Challenges
The improvement in cancer survival rates since President Richard M. Nixon signed the National Cancer Act of 1971 into law is staggering. The legislation further committed the United States to greater investments in cancer-focused research to drive down the rates of cancer diagnoses, boost patient outcomes, and, ultimately, find a cure for a disease that was responsible for about 199 deaths per 100,000 individuals in 1970.1
When the law was passed, in 1971, there were just 3 million cancer survivors in the United States.2 Over the succeeding decades, 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 33% reduction in overall cancer mortality since 1991, averting an estimated 3.8 million deaths.3 The result is, today, there are more than 18 million cancer survivors, and that number is expected to top 26 million by 2040.4
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.5 The cascading myriad long-term and late effects from cancer and its treatment can be especially daunting for adult survivors of childhood cancers, who often contend with chronic health problems for decades after their treatment ends, including hypertension, heart failure, heart attack, stroke, diabetes, hearing loss, secondary cancers, chronic kidney and liver disease, and premature ovarian failure. The long-term psychosocial risks are equally devastating and may include insomnia, fatigue, cognitive impairment, fear of recurrence, and concerns about relationships, work, and education. (See “Surviving, but Not Always Thriving, After Cancer, Part 2: Adolescents and Young Adults,” on page 102.)
Adult survivors of cancer are also at increased risk of ongoing physical and mental health issues. A recent study by Florido et al found that adult cancer survivors have a 42% greater risk of developing cardiovascular disease than people who have never had cancer, especially heart failure (52% higher risk), followed by stroke (22% higher risk).6 Cancer survivors also have a 26% higher risk of suicide compared with their healthy counterparts.7
Coping With Financial Toxicity From Cancer
Financial hardship is another persistent—and potentially fatal—side effect of cancer.
According to a study by the American Cancer Society, cancer survivors who reported medical financial hardship, including problems affording health care or delaying or forgoing altogether any health care because of cost, had a higher mortality risk than cancer survivors without financial hardship. The study results showed that among cancer survivors aged 18 to 64 and 65 to 79, 29.6% and 11.0%, respectively, reported financial hardship over the past 12 months. Survivors with hardship had higher adjusted mortality risk than their counterparts in both age groups: 18–64 years (hazard ratio [HR] = 1.17, 95% confidence interval [CI] = 1.04–1.30) and 65–79 years (HR = 1.14, 95% CI = 1.02–1.28).
Additional adjustment for health insurance reduced the magnitude of the association of hardship and mortality among survivors aged 18 to 64 (HR = 1.09, 95% CI = 0.97–1.24). Adjustment for supplemental Medicare coverage had little effect among survivors aged 65 to 79 (HR = 1.15, 95% CI = 1.02–1.29).8
K. Robin Yabroff, PhD, MBA
“There is a lot of research showing that when it comes to prescription medications, people with a cancer history are more likely to report splitting pills or not filling prescriptions because of cost. Not taking recommended medications is related to cancer treatment, as well as to other medical conditions,” said lead author of the study K. Robin Yabroff, PhD, MBA, Scientific Vice President, Health Services Research, American Cancer Society. “So, not only are these survivors with financial hardship not receiving the recommended cancer care, they may also not be receiving the recommended care for other chronic conditions such as diabetes and heart disease, all of which can increase mortality risk.”
In addition to putting survivors at increased risk of death from the financial burden of cancer, 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. Also, about 1 in 4 has had to declare bankruptcy or lost a home to eviction or foreclosure.9
Other research has found that survivors who went bankrupt were more likely to die than cancer survivors who did not file for bankruptcy. Not surprisingly, minority survivors, who have worse survival outcomes than White survivors, are also more likely to experience financial hardship caused by cancer than their White counterparts, reinforcing racial disparities in the U.S. health-care system.9
Examining the Long-Term Impact of Cancer
In Part 1 of this Special Report, The ASCO Post examines how new models of cancer care, which shift the focus from detection of recurrence and new cancers to a patient-centered model that identifies survivors’ needs and risks over their lifetimes and provide a more holistic approach to survivorship care that is coordinated among various medical specialties, can improve survivors’ long-term quality of life. We also investigate the impact cancer has on survivors’ identity and the role systemic racism may play in survivorship care inequities.
Our experts include Michael Jefford, PhD, MBBS, MPH, Consultant Medical Oncologist and Director of the Australian Cancer Survivorship Centre at Peter MacCallum Cancer Centre, and Professor at the University of Melbourne; Patricia A. Ganz, MD, FASCO, Associate Director for Population Science Research at the Jonsson Comprehensive Cancer Center at UCLA, Distinguished Professor of Medicine at the David Geffen School of Medicine at UCLA, Distinguished Professor of Health Management & Policy at the UCLA Fielding School of Public Health, and founding member of the National Coalition for Cancer Survivorship; Monique James, MD, Assistant Clinical Director, Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center; and Manali I. Patel, MD, MPH, MS, Assistant Professor, Division of Oncology at Stanford University School of Medicine and Staff Oncologist at the Veterans Administration Palo Alto Health Care System.
Developing Improved Models of Care for Cancer Survivors
A Conversation With Michael Jefford, PhD, MBBS, MPH
Michael Jefford, PhD, MBBS, MPH
Recently, you and your colleagues published an article in The Lancet advocating alternative models of cancer care, including models led by primary care physicians, care shared between oncology specialists and primary care physicians, and care led by nurses.10 Please talk about why the current cancer survivorship care models are not effective in addressing patients’ needs. Is it because they focus on the end of the acute, active phase of treatment rather than on the long-term problems many survivors face?
The historical background is that 50 or 60 years ago, cancers were difficult to treat, there were few successful treatments, and there were low survival rates. And although some cancers could be managed, there was a risk of recurrence, so the focus of survivorship or follow-up care was on monitoring survivors for cancer recurrence. Now, treatment advances have increased rates of cure, and we have many more survivors who are cured of their cancer, so a focus on cancer recurrence is not adding a lot of value.
Additionally, we recognize that many survivors have a variety of consequences from their treatments. The focus now should be on helping survivors to recover well, dealing with any consequences of their cancer and treatment, and making sure they are supported over their lifetimes. This is particularly true for adult survivors of childhood cancers, who may live potentially 70 or 80 years following their diagnosis.
The Institute of Medicine recommends that survivorship care plans be included in cancer survivorship care. However, studies suggest they may not improve cancer survivors’ patient-reported outcomes.11 Why aren’t these current plans more effective in supporting survivors over their lifetime?
We need to clarify survivorship care plans vs survivorship models of care. I think of a survivorship model of care as being how we deliver care to survivors, particularly after initial treatment of cancer. Survivorship care plans are written documents detailing diagnosis, treatments, plans for follow-up, and strategies to remain well. Perhaps it is not a surprise that a written document, by itself, does not shift patient outcomes. However, I think care plans remain an important communication and care coordination tool, intended for survivors, but also for the entire health-care team, including primary care providers.
As we discussed in The Lancet paper, there is good evidence that compared with oncologist-led follow-up care, nurse- or primary care–led follow-up care or follow-up care that is shared by primary care providers and oncologists is as effective—and may offer other benefits. That is important because it means the continued care of millions of survivors does not have to be in a cancer center with oncologists; it could be with other providers in the community, including by telehealth monitoring, relieving the looming oncology workforce shortage.
Please talk about how a continued focus on survival endpoints in clinical trials—and not enough on how toxic cancer treatments may impact the long-term outcomes of survivors—contributes to the unmet needs of survivors.
Overall survival is an important endpoint in clinical trials, but if treatments are toxic, we need to understand both the short- and long-term impacts on quality of life. Clinicians need to be able to discuss potential benefits with potential, or likely, harms.
In terms of the metrics of survivorship care, we need to understand survival, but we also need to understand quality of life, experience of care, and cost of care. Ideally, we should understand how people recover after treatments, hopefully, after making a full recovery. We need to make sure that cancer care and cancer follow-up care are not financially burdensome to survivors. We also need to look at equity in outcomes. It is critical for us to collect data about known determinants of poor outcomes to monitor and address disparate outcomes.
A Conversation With Patricia A. Ganz, MD, FASCO
You are a pioneer in cancer survivorship research. First, please talk about the incredible advances that are allowing increasing numbers of patients with cancer to survive the disease.
The tragedy in the making is that although the success of oncology treatments is allowing more patients to survive their cancer, an antiquated health-care system is unable to manage people with chronic conditions. Cancer survivors are not recognized as having an ongoing set of circumstances that need attention and often specialized attention. And the degree to which they have difficulty is often related to the severity of their original diagnosis and the intensity of their treatment, because there is a price for a cure.
The degree to which cancer survivors have difficulty is often related to the severity of their original diagnosis and the intensity of their treatment, because there is a price for a cure.— Patricia A. Ganz, MD, FASCO
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Even for people with a limited cancer, for example, early stage melanoma, that is easily removed, if they are young, those survivors are going to be at risk for new cancers or a recurrence for a long time and will need to be followed. So, even though they may have only a tiny brush with a cancer diagnosis, it sets them up to be under continued surveillance. For patients with a serious and aggressive cancer like non-Hodgkin lymphoma, which requires intensive treatment for a cure, they are faced with long-term morbidities. They are two divergent clinical situations, but in both cases, these survivors are not well served by the current health-care system, which is complex and a challenge to navigate.
What have you learned through your research and clinical practice about what can be done to improve the quality of life for cancer survivors throughout survivorship to minimize the physical, psychological, and social upheaval many experience?
The big concern is that once treatment ends, the oncology team focuses on looking for a cancer recurrence and may spend little time thinking about secondary cancers, which are common, and their prevention. Screenings for new primary cancers are often what primary care providers would do, but survivors do not get integrated back into primary care very well, and primary care providers do not always realize the higher-risk situation these survivors face.
There are also lifestyle health promotion concerns, which go along with cancer prevention. For example, if survivors are overweight or obese and are not physically active, or they continue to use tobacco or alcohol, they are at risk for second cancers and for many other chronic conditions, including heart disease and diabetes, which can be more common in cancer survivors.
Finally, what is important to provide in 100% of survivors is palliation for persistent symptoms, such as pain, fatigue, and depression, and this symptom management is palliative care because there is no underlying disease that is causing problems—just the toxicities of cancer and its treatments. For example, many cancer treatments are neurotoxic, and survivors are having falls and difficulty performing daily routines because of pain or physical dysfunction, which leads to excess morbidity from conditions that could have been prevented.
The current model of cancer survivorship care, which focuses on the end of the acute, active phase of treatment, does not address the ongoing problems survivors may have after treatment is completed. How can alternative models of care be developed that take a more holistic approach to survivorship, considering the complex medical, social, financial, and personal needs of cancer survivors?
A lot of what we proposed in the Institute of Medicine’s report, From Cancer Patient to Cancer Survivor: Lost in Transition,12 was to have a survivorship care plan that is exactly that type of personalized document. People got very hung up on the treatment summary part of the plan, which is meant to show the treatment the survivor received to be able to define the care plan. But it also documents long-term and late effects survivors may experience, as well as management strategies for persistent symptoms. The Institute of Medicine report also includes a chapter on models for the delivery of survivorship care, which were in their early stage of development in 2005 and were conceptualized as the setting where the care plan would be implemented with the patient.
The alternative models of care—ie, noncancer specialist care—that Dr. Jefford and his colleagues suggest are an extension of models that were described much earlier with a contemporary focus. But we have had great difficulty getting traction on the plan as well as implementing new care models, because investigators focused on the care plan alone as an intervention. There were a few studies showing that the care plan alone did not improve survivor benefit in terms of short-term quality of life, but evaluation of the models of care delivery over time has had limited testing.
The idea of the survivorship care plan we proposed was basically a long-term roadmap for symptom management and potential risk factors survivors need to be aware of so they can be proactive in their care. We also recommended the plan needs to be shared among survivors’ other clinicians. I certainly look forward to primary care physicians sharing in cancer survivors’ care, but it is not easily done.
There has to be some financial reward for coordinating this type of care, and the payment models we currently have do not value this type of coordinated care, so physicians are not reimbursed for their time. I do not know what the proposed new oncology care models are recommending, but to succeed, there must be a fee structure built into the system to support the coordination of care, especially for survivors with many long-term health problems related to initial cancer treatment.
Recognizing How Cancer Changes the Identity of Survivors
A Conversation With Monique James, MD
How much of an impact cancer has on identity has a lot to do with where individual survivors are in terms of their life cycle change, sometimes even more than the stage of their cancer.— Monique James, MD
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How does getting a cancer diagnosis impact a person’s identity? And how is it different for adolescents and young and older adults?
This is an important topic because there are now 18 million cancer survivors, and that number will continue to grow as more cancers become chronic illnesses. I see patients who run the gamut of being at high risk for developing cancer—for example, if they have a BRCA gene mutation but have not yet been diagnosed with cancer to patients with stage IV disease and those at the end of life. And with more cancer survivors living with incurable, chronic cancers, the question becomes, how do these survivors integrate the cancer experience into their lives?
Among survivors of all ages there are some common experiences when confronted with a cancer diagnosis. Number one is the concept of mortality, which becomes, especially for younger people, more prominent and tangible in their lives. And although reckoning with mortality can be difficult whether you are 18 or 87, it can be more challenging for adolescents and young adults, who are not expecting to be facing death and have not had to take medications or see various specialists multiple times a week.
The first change in identity can come after a cancer diagnosis, when there is the most uncertainty, and a lot of new information must be absorbed and acted upon. That uncertainty can last even if the person is doing well on treatment and not experiencing side effects, or even cured, because the survivor still must be monitored for a cancer recurrence.
Changes in body integrity can be most profound when there are body alterations as a result of the cancer, especially if they are obvious to others and can impact intimate relationships.
How much of an impact cancer has on identity has a lot to do with where individual survivors are in terms of their life cycle stage, sometimes even more than the stage of their cancer.
Psychologically, do cancer survivors ever get over having cancer, or is there always lingering concern and fear of recurrence?
For many cancer survivors, fear of recurrence is part of the cancer integration story, especially as more people are living longer after cancer. Cancer survivors must learn to reconcile seeing themselves as a cancer patient to seeing themselves as a cancer survivor. They also need to develop coping mechanisms to deal with fears of cancer recurrence, long-term effects from treatment, and changes in their body.
Is there an upside to a cancer diagnosis? For example, does it give cancer survivors a new sense of life purpose and greater resilience?
There are some common themes people experience when they are faced with their own mortality, whether it is from a cancer diagnosis or another life-threatening illness. Facing mortality tends to give you clarity about the aspects of your life that you want to continue or not continue and how you want to use your energy.
Many of my patients talk about not sweating the small stuff anymore after a cancer diagnosis. How a survivor chooses to live after a cancer experience will be unique to that person. There is posttraumatic growth in which survivors foster different kinds of resilience and different ways of looking at what being strong means in a way they could not have done
without experiencing cancer trauma; this sometimes may lead to more adaptability and coping flexibility.
Survivors often have to create a vision for themselves of what they want to be in the future and how to employ coping mechanisms that can be strengthened over long-term survivorship.
Ensuring Equal and Equitable Cancer Care
A Conversation With Manali I. Patel, MD, MPH, MS
Our research team has been working closely with several community-based organizations to implement screening and referral processes, so these health-related social needs are routinely addressed as part of usual cancer care.— Manali I. Patel, MD, MPH, MS
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Black individuals have the highest death rate and shortest survival of any racial/ethnic group in the United States for most cancers, and Black women are 41% more likely to die of breast cancer than White women, despite a lower incidence of the disease.13 And within the health-care system, Black cancer survivors encounter more medical errors, dismissed symptoms, misdiagnosis, treatment delays, and substandard care than White cancer survivors. Please talk about the role systemic racism may play in cancer care inequities.
Systemic racism and its impact on cancer care delivery is one of the fundamental etiologies for these differences. For decades, we have focused on the biological drivers for these disparate cancer outcomes between Black and White patients with cancer. Yet little work has addressed the upstream factors, specifically the policies that result in complications from social determinants of health and lead to these different outcomes.
One example is “redlining,” a term that has come to mean racial discrimination of any kind in housing. Redlining has had a long-standing impact on cancer disparities and is associated with worse outcomes among Black and other racial and ethnic minoritized populations with cancer. These upstream factors have downstream consequences and are drivers for why we are seeing disparities in cancer incidence and outcomes.
When Black and other racial and ethnic minoritized patients receive equitable, not just equal, treatment, including routine access to and receipt of high-quality cancer care (such as genomic testing and targeted treatments), outcomes are similar to, if not better than, those of White patients with the same cancer type.
How can institutional discrimination through implicit and explicit biases, institutional structures, and interpersonal relationships that support health inequities and that adversely affect health outcomes be addressed and reduced?
We know that where patients go for care determines the care they receive. Many institutions have not engendered trust in some communities. We know from the work in my lab that patients will bypass these institutions and receive care in locations that may be more trustworthy, but where clinical outcomes may be worse. Institutional trustworthiness is one barrier that is modifiable.
Another barrier to high-quality care is the type of insurance patients have, which could prevent them from getting in the door of a major cancer center. And even if they do get in the door, they may not receive the follow-up care they need because of cost or because the health system is not built from the lens of health equity in which patients can easily receive the evidence-based care they need and are entitled to receive. In our clinic at the Veterans Administration Palo Alto Health Care System, we try to arrange surveillance scans, laboratory tests, and clinic visits on the same day to eliminate barriers for patients and to make care more convenient for them.
A third system-level barrier is implicit, or unconscious, bias that influences treatment decisions. We all have implicit bias. It is important to be aware of our biases and how they may influence the cancer care we deliver. As I mentioned previously, when racial and ethnic minoritized patients receive evidence-based care, racial disparities in cancer are eliminated.
It is not about delivering equal care, it is about ensuring equitable care. This means some patients may need different types of support in place. Examples of this type of support include access to patient navigators or social workers to assist with addressing social and economic barriers, culturally tailored educational materials and survivorship guides in patients’ preferred languages, or even visual supports, to ensure they receive evidence-based, equitable care.
Although health-related quality of life is lower for cancer survivors than it is for individuals who have never had cancer, it is worse for minority groups and pediatric or adolescent and young adult cancer survivors, which increases the likelihood of cancer recurrence and mortality. How can health-related quality of life be improved for these cancer survivors? What intervention strategies are needed?
There are many factors that impact survivors’ health-related quality of life, including access to healthy food, appropriate housing, transportation, and safety from domestic and other types of violence. Typically, we do not routinely screen for or even address these issues unless they are brought up by the patient in the clinic.
Our research team has been working closely with several community-based organizations to implement screening and referral processes, so these health-related social needs are routinely addressed as part of usual cancer care. Oncologists know that physical, mental, and behavioral health are key components of health-related quality of life. Social and economic needs are intertwined with survivors’ physical, mental, and behavioral health. If we really want to improve health-related quality of life, our interventions must be more expansive.
DISCLOSURE: Dr. Yabroff serves on the Flatiron Health Equity Advisory Board and donates honoria to the American Cancer Society. Dr. Ganz has received royalties from UpToDate for her role as editor of its section on cancer survivorship; she also receives consulting fees from InformedDNA, Blue Note Therapeutics, and Roche. Dr. Jefford, Dr. James, and Dr. Patel reported no conflicts of interest.
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5. Cancer care: Beyond survival. Editorial. Lancet 399:1441, 2022.
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9. Levey NN: In America, Cancer Patients Endure Debt on Top of Disease. KFF Health News, July 9, 2022. Available at https://khn.org/news/article/in-america-cancer-patients-endure-debt-on-top-of-disease/. Accessed April 26, 2023.
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Surviving, but Not Always Thriving, After Cancer: Unique Needs of Adolescent and Young Adult Survivors
As discussed in Part I of this special feature on cancer survivorship, there are now more than 18 million cancer survivors in the United States, and that number is expected to grow to 26 million by 2040.1 However, most of those survivors—at least two-thirds—either cured or in remission or living...