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Cancer Survivorship: Addressing Complex Needs throughout the Lifespan

The number of cancer survivors has grown dramatically over the past several decades, a trend that is expected to continue as diagnosis and treatments improve. In 2019, the number of cancer survivors reached more than 16.9 million in the United States, and that number is expected to grow to more than 22.2 million by 2030.

An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Survivors include those living with cancer and those free of cancer.

NCI-funded research has played a vital role in identifying the unique medical and psychological needs of both children and adults with a history of cancer. This includes NCI-funded studies documenting the large burden of late effects of cancer and its treatment. NCI is also funding research on the racial and ethnic disparities that exist throughout the cancer care continuum, including in survivorship.

Challenges That Cancer Survivors Face
  • Risk of recurrence
  • Increased risk of second primary cancer
  • Reduced quality of life
  • Treatment side effects (cardiotoxicity, cognitive challenges)
  • Emotional distress (depression, anxiety/uncertainty, altered body image, survivor’s guilt)
  • Physical problems
  • Loss of fertility and/or diminished reproductive health
  • Difficulty maintaining or finding employment
  • Economic burden (financial toxicity)
  • Denial of health and/or life insurance
  • Barriers to health care (high insurance and out-of-pocket costs for health care, lack of coordination of health care, and limited access to specialty care)

Continued research will help us to understand and find ways to address the challenges that cancer survivors face. NCI-funded researchers are working to develop effective interventions that mitigate the short- and long-term adverse effects of cancer and its treatment, based on the mechanisms that cause them. NCI is also actively supporting research to understand how to improve the delivery of care to cancer survivors. In addition, improving the quality of life of survivors requires research to better understand the role of diet, exercise, and other modifiable risk factors. NCI’s work in these areas will support new ways to greatly improve the well-being and quality of life of cancer survivors.

Improving Survivorship after Cancer in Early Life

The potential burden of the long-term effects of cancer and its treatment are particularly salient for survivors of pediatric cancers. Due to major advances in treatment, 80% of children (aged 14 and younger) and adolescents (aged 15‒19) treated for cancer will now survive 5 years or more. Yet, many treatments that are effective against cancer increase the risk of conditions that can impair the quality and length of life, such as heart problems, infertility, cognitive deficits, and second cancers. There is also emerging evidence that survivors of pediatric cancer experience the effects of accelerated aging (for example, frailty, comorbidities, or a decline in exercise capacity) and reduced life expectancy.

Longstanding studies such as the NCI-funded Childhood Cancer Survivor Study and St. Jude LIFE Study have enabled researchers to identify these late effects of cancer and its treatment. For instance, in 2017, NCI-funded researchers at St. Jude Children’s Research Hospital published a comprehensive account of the large and diverse set of aging-related chronic health conditions faced by childhood cancer survivors compared with individuals of the same age without a history of cancer.

More research is needed to understand the biological mechanisms underlying these effects and to develop new ways to prevent and mitigate them. As part of the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2018, NCI is working to improve the care and quality of life of childhood, adolescent, and young adult cancer survivors by supporting research across multiple domains, including the impact of familial, socioeconomic, and environmental factors on survivor's outcomes.

Specifically, NCI is supporting a series of studies testing new interventions to prevent and manage late and long-term treatment effects, such as burdensome symptoms, sedentary behavior, and neurocognitive dysfunction. Other research is testing approaches to survivorship care delivery that will improve outcomes and reduce the burden of cancer morbidity. These studies are also exploring the use of technology to combat sedentary behavior and to identify and manage problematic symptoms in real-time.

Part of NCI’s efforts to expand childhood cancer biobanking also align with the STAR Act. These efforts to increase specimen collection and genomic sequencing of survivors diagnosed with subsequent cancers and those experiencing chronic health conditions will aid the biological understanding of long-term effects of treatment for childhood cancers.

NCI is also investing in the Childhood Cancer Data Initiative (CCDI), which includes the development of a National Childhood Cancer Registry. The registry will build upon and complement existing cancer registry efforts led by both NCI and the Centers for Disease Control and Prevention. Resources developed through the CCDI will help support scientists by improving the availability and usability of data from this important patient population. These efforts will also leverage new methods in data science to study the long-term health of childhood, adolescent, and young adult cancer survivors.

Understanding, Preventing, and Mitigating Long-Term Effects of Cancer Treatment

Long-term side effects of some cancer treatments can also impair the length and quality of life of cancer survivors diagnosed as adults. NCI funds a wide range of research to identify these effects and to test interventions to prevent and mitigate them. For example, NCI-supported cancer survivor cohort studies help researchers to identify and understand the long-term effects of cancer treatment as well as other factors that impact the health of survivors.

Heart damage, for example, is a side effect of some cancer drugs, such as the chemotherapy agent doxorubicin that is used to treat several types of cancer. Researchers are actively testing strategies to reduce the toxicity of drugs and protect cardiac function during cancer treatment. For example, with NCI funding, researchers at Albert Einstein College of Medicine and their collaborators recently found that an experimental drug called BAI1 prevented heart damage from doxorubicin in mouse models of breast cancer and leukemia. BAI1 prevented the death of heart cells and did not interfere with doxorubicin’s ability to kill cancer cells. The researchers plan to conduct a clinical trial to continue testing this strategy.

Some patients with metastatic cancers treated with immunotherapy, such as immune checkpoint blocking drugs for melanoma or non-small cell lung cancer, are surviving many years after their diagnosis. Yet, while these drugs can have serious and acute side effects, little is known about their long-term effects. To fill this knowledge gap, NCI is funding research to follow patients treated with immunotherapies and study the long-term impacts of these treatments.

Long-lasting cognitive changes that occur in children, adolescents, and adults who are treated with chemotherapy are well documented, but little is known about the mechanisms that contribute to these cognitive problems. Interventions to prevent or ameliorate them are only in their infancy, and NCI is actively soliciting research proposals that leverage recent discoveries in cognitive neuroscience to study this phenomenon. The long-term effects of newer therapies are not well known, and more research is needed to investigate them as well.

These examples highlight just a few of the areas of research NCI is pursuing to better understand, prevent, and mitigate the harmful effects of cancer treatment to improve long-term outcomes for cancer survivors.

Understanding How to Improve the Delivery of Survivorship Care

NCI supports research to improve the delivery of care for cancer survivors in diverse settings. Challenges for the care of survivors can include, for example, the transitions from pediatric to adult care settings or from specialty to primary care settings.

After cancer treatment ends, a patient’s transition from receiving care from an oncology team to a primary care team is challenging for many reasons. One reason is that the current model relies heavily on the patient’s ability to communicate and facilitate the transition, but many patients cannot maintain that role. There is also a need to better understand what tools and resources primary care providers need to ensure they are well-equipped to provide survivorship care. With support from the Cancer Moonshot℠, NCI is supporting research on interventions that enhance communication, collaboration, and coordination among oncologists and other health care providers to improve outcomes for cancer survivors.

NCI-supported researchers are also seeking to better understand how to tailor the level of survivorship care based on an individual’s specific needs. For instance, certain patient subgroups may warrant more intensive follow-up care than others based on, for example, risk of recurrence or the physical or physiological effects of their cancer and its treatment. NCI is currently seeking new ideas from the research community to address this need.

Improving Outcomes through Healthier Lifestyles

Research studies have suggested that engaging in physical activity, eating a healthy diet, maintaining a healthy weight, and other health behaviors may improve the quality and length of life for survivors of certain cancers.

In 2019, the American College of Sports Medicine updated its recommendations on the role of physical activity in cancer survivorship and prevention. Research funded by NCI and others provided evidence to conclude that aerobic and/or resistance training can improve physical functioning, health-related quality of life, and common cancer-related health outcomes, including anxiety, depressive symptoms, and fatigue. In 2020, an NCI-funded study added to the evidence linking exercise with longer survival in women diagnosed with high-risk breast cancer.

NCI is also supporting research on weight and weight-loss strategies in survivors of cancer, including different racial and ethnic populations. NCI has funded a range of additional research on behavioral factors and cancer survivorship. Yet, many questions still need to be answered to provide more precise guidance to cancer survivors during and after treatment.

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