Melanoma survivorship: research opportunities

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J Cancer Surviv (2007) 1:87–97 DOI 10.1007/s11764-007-0009-y

Melanoma survivorship: research opportunities Susan A. Oliveria & Jennifer L. Hay & Alan C. Geller & Maureen K. Heneghan & Mary S. McCabe & Allan C. Halpern

Published online: 6 February 2007 # Springer Science + Business Media, LLC 2007

Abstract Introduction The rising incidence and mortality rates of melanoma, the most fatal form of skin cancer, are among the greatest increases of all preventable cancers over the past decade. However, because of recent advances in early detection, secondary prevention efforts, and treatment, the number of melanoma survivors is increasing. Little research has been conducted on melanoma survivors and important opportunities exist for research in this understudied population. Here, we outline the important research opportunities related to the study of melanoma survivorship and summarize the paucity of literature currently available. Materials and methods A computerized literature search was performed of the MEDLINE® database of the National Library of Medicine from 1966–2005. The scope of the search was limited to those studies published in English. The search was conducted using the following MeSH headings: melanoma, neoplasms, skin neoplasms, survival, S. A. Oliveria (*) : M. K. Heneghan : A. C. Halpern Department of Medicine, Dermatology Service, Memorial SloanKettering Cancer Center, 160 East 53rd Street 2nd Floor, New York, NY 10022, USA e-mail: [email protected] J. L. Hay Department of Psychiatry and Behavioral Sciences, Psychiatry Service, Memorial Sloan-Kettering Cancer Center, New York, NY, USA A. C. Geller Department of Dermatology, Boston University School of Medicine, Boston, MA, USA A. C. Geller Department of Epidemiology and Biostatistics, Boston University School of Public Health, Boston, MA, USA M. S. McCabe Office of Physician-in-Chief, Memorial Sloan-Kettering Cancer Center, New York, NY, USA

and survival rate. The reference lists of relevant book chapters and review articles were further reviewed, and printed materials from recent scientific meetings addressing this topic were obtained. Results Several factors that affect melanoma survivors warrant further study, including: physiologic long-term effects; psychosocial, behavioral, and cognitive factors; demographic characteristics; surveillance practices; recurrences, secondary primaries, and other cancers; family members of survivors; and economic issues, access to health care/life insurance. Conclusions Understanding recurrence and second primary cancer risk, psychosocial and cognitive characteristics, behaviors, surveillance patterns, economic sequelae, and family issues of melanoma survivors is important from a public health standpoint to promote the health and wellbeing of this cohort. Implications for cancer survivors Melanoma is an understudied cancer, and the incidence and mortality of this disease are increasing. Describing the long term burden of this cancer and identifying factors that contribute to them will facilitate efforts to develop responsive secondary prevention strategies. Keywords Melanoma . Survivorship . Prevention . Surveillance . Research opportunities

Introduction Skin cancer comprises more than half of the 2.5 million cancers diagnosed in the US [78, 95]. Melanoma, the most fatal form of skin cancer, constitutes a modern cancer epidemic with rapidly rising incidence and mortality rates [26, 55]. These rising rates account for the greatest increases during the past decade among all preventable cancers [55]. An estimated 59,580 people in the US will be

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diagnosed with melanoma in 2005 with approximately 7,700 associated deaths [57]. The incidence of melanoma has doubled during the time period 1988–1999 [44]. Overall melanoma mortality rates rose in 1969–1999, but with striking differences by age and gender. During 1969– 1999, melanoma mortality rates were reduced by 39% in younger women and by 29% in younger men. In contrast, mortality rates increased 19% in middle-aged women (45– 64 years), 66% in middle-aged men, and 157% in older men [42]. A recent report utilizing the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute show that melanoma represents 6% of primary cancers among cancer survivors, and there are an estimated 629,822 melanoma survivors [16, 80]. Younger adults are disproportionately affected by melanoma; the median age at diagnosis is 53 years [29]. Thus, these patients represent a significant group of adult cancer survivors that are still in the work force and likely to have relatively young children. Melanoma is the most common cancer site in young adults and in terms of years of potential life lost, is second only to adult leukemia [18, 38, 73, 105]. However, virtually no information about age distribution, gender, race/ethnicity, income, education level and duration since diagnosis is available on the characteristics of melanoma survivors. Research on long-term cancer survivors, those who are 5 years or more beyond cancer diagnosis, suggests that cancer survivorship cohorts are likely to grow [6, 44, 51, 105], and this is particularly probable for melanoma survivors because of the young age at diagnosis and improved survival related to earlier recognition of disease [44]. Opportunities exist for researchers to understand the effects, both direct and indirect, of melanoma survivorship, and it is important from an individual and public health standpoint to promote the health and well-being of this cohort. Melanoma survivorship research can address identification of and interventions for long term and late effects, optimal follow-up and surveillance, methods of optimizing health after cancer, and models of follow-up care. Further, research is needed to understand the psychosocial and cognitive factors that are likely to play a role in influencing health behaviors, surveillance patterns, and family issues for melanoma survivors. Melanoma survivors represent an understudied cohort and survivorship research represents an important opportunity to address the long term and late effects of cancer survivorship (Tables 1 and 2).

Secondary prevention efforts Recognition of the disease burden associated with melanoma and concerns over the dramatic and persistent rise in incidence over the past decades have led to efforts in the

J Cancer Surviv (2007) 1:87–97 Table 1 Factors affecting melanoma survivors and topics for future research Factors and future topics Physiologic long-term effects Psychosocial, behavioral, and cognitive factors Demographic characteristics Surveillance practices Recurrences, second primaries, and other cancers Family members of survivors Economic issues, access to health care/life insurance

secondary prevention of melanoma. Secondary prevention of skin cancer entails the detection of skin cancer in its earliest stages when it can readily be cured by a simple outpatient excision procedure [1, 4, 56, 60, 97, 102]. Melanoma skin cancers are highly visible with a significant detectable preclinical phase, making them conducive to early identification and successful cure through screening [62]. Furthermore, screening tests are safe and acceptable to the public [61, 62]. Early melanoma can be identified by both physicians and patients using the ‘ABCD’ guidelines for examining new and or changing lesions (A–asymmetry, B–border irregularity, C–varied color, D–diameter greater than 6 mm) [35, 60]. There is a direct relationship between survival of patients with melanoma and early detection. Lesion thickness (Breslow depth), a reflection of tumor volume, has been identified as one of the most important prognostic factors for primary cutaneous melanoma with survival inversely related to lesion thickness [12, 72, 94]. In fact, the 5-year relative survival rate for people with melanoma is 91%, and the 10-year survival rate is 87% [3]. For localized melanoma, the 5-year survival rate is even higher at 98%, while the 5-year survival rates for regional and distant stage diseases are 60% and 16%, respectively [3]. The 5-year relative survival rate for all cancers diagnosed between 1995 and 2000 is 64%, an improvement from 50% in 1974–1976 [3]. Primary screening for melanoma runs the spectrum from an average-risk person conducting casual self-examination to high-risk persons (i.e. those with a family history and multiple atypical nevi) undergoing systematic monthly examination of the entire skin by a skin cancer specialist. Secondary prevention strategies predicated on the early detection of readily cured melanomas are advocated by many as an intuitively obvious approach to reduce melanoma associated morbidity and mortality [35, 46, 62, 81]. While screening for the early detection of melanoma is recommended, widespread acceptance of screening has been hindered by the lack of randomized trials showing that screening is effective. The results from public health campaigns targeting the early detection of skin cancer

J Cancer Surviv (2007) 1:87–97 Table 2 Importance of melanoma survivorship research Importance of melanoma Melanoma is an understudied cancer Melanoma incidence and mortality rates are increasing There are nearly 629,822 melanoma survivors Survivors are at increased risk for recurrences, second primaries, and other cancers Melanoma is preventable through adoption of primary prevention efforts Secondary prevention strategies are effective Family members can benefit from adoption of prevention strategies

suggest a reduction in incidence and mortality can be attributed to these campaigns [22, 24, 64, 69, 84, 93, 98, 106]. Self-screening is important because self-detection by patients, spouses, and families, is the most common way skin cancer is currently detected, even though skin selfexamination may not be performed routinely or thoroughly [63, 113]. Among 229 melanoma survivors, 84% reported performing skin self-examination at least once in the past year [71]. Behavioral interventions aimed at improving skin surveillance practices among melanoma survivors, a highrisk group, have the potential to increase early detection and ultimately improve survival rates.

Surveillance and physiologic long term effects It is important to understand the long term effects of cancer in survivors and the medical management of these patients. Specifically, melanoma patients are at risk of developing recurrences, second primary tumors, and other cancers. While earlier studies of melanoma patients found recurrence rates as high as 33%, more recent studies of stage I localized melanoma indicate recurrence rates approaching 17–20% at five or more years post diagnosis [20, 37]. Among nine studies examining late recurrence of melanoma (>10 years), recurrence ranged from 0.65 to 6.7% of patients [66]. Soong et al. [101], examined factors that affect melanoma recurrence in 4,568 patients followed for a median of 5.3 years. Among the 1085 first recurrences, 21.8% were local, 48.8% regional and 29.4% were at distant sites [101]. This review demonstrated that nearly half of all patients who experienced recurrences were staged as regional (including regional only and regional plus local). Interestingly, by 5–10 years follow-up, nearly half of all recurrences occurred at distant sites (60/119, 50.4%). The 5- and 10-year risks of developing a second primary melanoma range from 2.1 to 3.6% [9, 27]. Melanoma patients also have an increased risk of chronic lymphocytic leukemia and non-Hodgkin’s lymphoma [45, 75]. Specifically, there is a statistically significant increased

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risk of chronic lymphocytic leukemia following a melanoma diagnosis (standardized incidence ratio, 2.3; 95% confidence interval, 1.1–4.4, p
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