Trends and advances in cancer survivorship research: challenge and opportunity1

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Abstract

With continued advances in strategies to detect cancer early and treat it effectively along with the aging of the population, the number of individuals living years beyond a cancer diagnosis can be expected to continue to increase. Although beneficial and often lifesaving against the diagnosed malignancy, most therapeutic modalities for cancer are associated with a spectrum of late complications ranging from minor and treatable to serious or, occasionally, potentially lethal. Taken as a whole, investigators conducting research among long-term cancer survivors (those 5 years or more beyond cancer diagnosis) are reporting that long-term adverse outcomes are more prevalent, serious, and persistent than expected in survivors of both pediatric and adult cancer. However, the long-term and late effects of cancer and its treatment remain poorly documented and understood among those diagnosed as adults. These data underscore the need for continued research in this ever-growing portion of the cancer survivorship spectrum. This article examines (1) definitional issues relevant to cancer survivorship, (2) the evolving paradigm of cancer survivorship research, (3) prevalence data for cancer survivors, (4) research needs and issues of particular relevance to long-term cancer survivors, and (5) cancer survivorship as a scientific research area with an overview of physiologic/medical sequelae of cancer diagnosis and treatment and the grading of late effects. A large and growing community of cancer survivors is one of the major achievements of cancer research over the past 3 decades. Both length and quality of survival are important endpoints. Many cancer survivors are at risk for and develop physiologic and psychosocial late and long-term effects of cancer treatment that may lead to premature mortality and morbidity. Interventions—therapeutic and lifestyle—may carry the potential to treat or ameliorate these late effects and must be developed, examined, and disseminated if found effective.

Section snippets

Definitional issues

Fitzhugh Mullan,14 a physician diagnosed with and treated for cancer himself, first described cancer survivorship as a concept. Definitional issues for cancer survivorship encompass 3 related aspects:

  • 1.

    Who is a cancer survivor? Philosophically, anyone who has been diagnosed with cancer is a survivor, from the time of diagnosis to the end of life (from the National Coalition for Cancer Survivorship). Caregivers and family members are also included within this definition as secondary survivors.

  • 2.

The evolving paradigm of cancer survivorship research

Consistent with the shift in our perceptions of cancer as a chronic disease, new perspectives, and an emerging body of scientific knowledge must now be incorporated into Mullan’s original description of the survivorship experience.19 Mullan’s comparison of cancer survivorship with “seasons of the year” had implied that the availability and widespread use of curative and effective treatments would lead to a low likelihood of recurrence and longer survival times. However, the potential impact of

Prevalence data for cancer survivors

Cancer survival has risen steadily over the past 3 decades for all cancers combined. Prevalence proportions estimated from cancer incidence and follow-up data in the Surveillance, Epidemiology, and End Results (SEER) registry indicate that there are currently 8.9 million cancer survivors in the United States alone (nonmelanoma skin cancer and in situ diseases are excluded from this estimate), representing 3.3% of the entire US population.21, 22 As past and future advances in cancer detection,

Implications of the data

Most survivors can expect to cross the 5-year mark, and, for many, cancer has become a chronic illness. However, although our understanding of the causes of differences in cancer incidence and mortality in diverse populations is growing rapidly, the effect of diagnosis and treatment on those who continue to survive and live with their disease is less clear. Survival disparities exist across ethnocultural minority and medically underserved groups. The demography of cancer survivorship is

Long-term cancer survivors: research needs and issues in a growing yet understudied portion of the survivorship continuum

Although cancer survivors are living longer, we have limited knowledge and many questions about the health status, functioning, and quality of life for most of those who have been post-treatment for long periods of time. What are the most common late effects of treatment? Who is at risk and can they be protected? Can treatment-related injury to normal tissue be prevented or reversed? What proportion of survivors will experience recurrent or second malignancies? Who should be following these

Physiologic late effects

Most cancer treatments carry substantial risk of adverse long-term or late effects, including neurocognitive problems, premature menopause, cardiac dysfunction, sexual impairment, chronic fatigue and pain syndromes, and second malignancies for both adult and childhood cancer survivors.56, 57 One fourth to one third of breast and lymphoma survivors who receive chemotherapy may develop detectable neurocognitive deficits,58, 59, 60 and late clinical cardiotoxicity, often life threatening, may

Discussion

Cancer survivorship research continues to provide us with a growing body of evidence regarding the unique and uncharted consequences of cancer and its treatment among those diagnosed with this disease. It is becoming an acknowledged fact that most cancer treatment options available and in use today will affect the future health and life of those diagnosed with this disease. Adverse cancer treatment-related sequelae thus carry the potential to contribute to the ongoing burden of illness, health

Conclusion

A large and growing community of cancer survivors is one of the major achievements of cancer research over the past 3 decades. Both length and quality of survival are important endpoints. Many cancer survivors are at risk for and develop physiologic and psychosocial late and long-term effects of cancer treatment that may lead to premature mortality and morbidity. As in the past when treatments were modified to decrease the chance of toxicities in childhood cancer survivors, the goal of future

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    1

    The ongoing need for research among long-term survivors of cancer is identified as a key initiative within the new Cancer Survivorship Extraordinary Opportunity for Research Investment - FY 2004 Bypass Budget of the National Cancer Institute.

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