Close ties: an exploratory Colored Eco-Genetic Relationship Map (CEGRM) study of social connections of men in Familial Testicular Cancer (FTC) families

Hereditary Cancer in Clinical Practice, Mar 2012

Background Testicular cancer, while rare compared with other adult solid tumors, is the most common cancer in young men in northern Europe and North America. Risk factors include white race, positive family history, contralateral testicular cancer, cryptorchidism, infertility and testicular microlithiasis. As the genetic causes of familial clusters (Familial Testicular Cancer or FTC) are being sought, it is also important to understand the psycho-social experiences of members of FTC families. Methods This is a cross-sectional examination via the Colored Eco-Genetic Relationship Map (CEGRM) of social connections reported by 49 men in FTC families participating in NCI research study 02-C-178. Results The CEGRM was acceptable and feasible for use with men in FTC families, and valuable in understanding their social connections. These men have largely adjusted to the TC history in themselves and/or their relatives. They have considerable social and emotional support from family and friends, although there is wide variability in sources and types. Conclusions The CEGRM focuses on men's social connections and close emotional bonds in FTC families. This action-oriented process of placing colored symbols on significant relationships uncovered previously under-appreciated emotions accompanying men's social exchanges. Most men in FTC families succeed in re-establishing a sense of normalcy in their lives and social connections, in the aftermath of a testicular cancer diagnosis.

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Close ties: an exploratory Colored Eco-Genetic Relationship Map (CEGRM) study of social connections of men in Familial Testicular Cancer (FTC) families

Hereditary Cancer in Clinical Practice Close ties: an exploratory Colored Eco-Genetic Relationship Map (CEGRM) study of social connections of men in Familial Testicular Cancer (FTC) families June A Peters 0 Regina Kenen 1 Lindsey M Hoskins 0 Gladys M Glenn 0 Christian Kratz 0 Mark H Greene 0 0 Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, National Institutes of Health, US Department of Health and Human Services , 6120 Executive Blvd, Rockville, MD, 20852 USA 1 Department of Sociology and Anthropology, The College of New Jersey , Ewing, NJ , USA Background: Testicular cancer, while rare compared with other adult solid tumors, is the most common cancer in young men in northern Europe and North America. Risk factors include white race, positive family history, contralateral testicular cancer, cryptorchidism, infertility and testicular microlithiasis. As the genetic causes of familial clusters (Familial Testicular Cancer or FTC) are being sought, it is also important to understand the psycho-social experiences of members of FTC families. Methods: This is a cross-sectional examination via the Colored Eco-Genetic Relationship Map (CEGRM) of social connections reported by 49 men in FTC families participating in NCI research study 02-C-178. Results: The CEGRM was acceptable and feasible for use with men in FTC families, and valuable in understanding their social connections. These men have largely adjusted to the TC history in themselves and/or their relatives. They have considerable social and emotional support from family and friends, although there is wide variability in sources and types. Conclusions: The CEGRM focuses on men's social connections and close emotional bonds in FTC families. This action-oriented process of placing colored symbols on significant relationships uncovered previously underappreciated emotions accompanying men's social exchanges. Most men in FTC families succeed in re-establishing a sense of normalcy in their lives and social connections, in the aftermath of a testicular cancer diagnosis. - Introduction Testicular Cancer (TC) is rare, with about 8,500 new US cases per year in 2010 according to the American Cancer Society website (accessed 11/28/2011) (http://www. cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-026238.pdf). Worldwide, 2008 GloboCan statistics estimated 52,322 TC cases worldwide http://globocan.iarc.fr/factsheets/populations/factsheet.asp?uno=900#MEN (accessed 11-2111), which is far less than incidence of common cancers such as lung, which is projected to develop more than one million new cases among men, worldwide. Unlike the common cancers of aging, testicular cancer is most common in young men (typically, aged 15-35 years) in northern and western Europe and North America. Of concern, TC incidence has been increasing since World War II [1]. Testicular cancer is highly treatable, but chemotherapy treatment may leave long-lasting adverse effects. Known TC risk factors include white race, prior contralateral testicular cancer, cryptorchidism and other genitourinary (GU) abnormalities, sub-fertility and family history. Other suspected factors include tall adult height, early exposures to female hormones and/or endocrine disruptors and, possibly, testicular microlithiasis [2,3]. Testicular cancer (TC) is usually not the first condition that comes to mind when considering hereditary contributions to cancer susceptibility. In addition to TC being a rare cancer, only a small percentage, i.e., about 2% of men with TC have an affected relative and are considered to have Familial Testicular Cancer (FTC). Having a positive family history of TC is associated with a 4-6 fold increase in sons of TC-affected fathers; and 810 fold increase in brothers [4,5]. These relative risks are higher than other known hereditary cancer susceptibility syndromes, in which a positive family history confers an approximately 2-fold increase. Unfortunately, there is currently no clinical genetic testing available for FTC, unlike other hereditary cancer susceptibility syndromes in which highly-penetrant gene mutations have been discovered as the genetic cause. More detailed information about our current understanding of FTC genetic and environmental risk factors of FTC can be found in Additional file 1 and elsewhere. While the specific genetic causes of familial testicular cancer clusters (FTC) are being sought, it is equally important to understand the experiences and quality-of-life of FTC family members, to better help the family cope with TC or reduce the risk of future cancer. In a recent literature search, we found no studies focusing on familial factors related to psychosocial or behavioral adjustment to TC, although the literature has described effects of sporadic TC on sexual functioning and marital relationships [6,7]. While some men with TC and their spouses have reported problematic couples adjustment (...truncated)


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June A Peters, Regina Kenen, Lindsey M Hoskins, Gladys M Glenn, Christian Kratz, Mark H Greene. Close ties: an exploratory Colored Eco-Genetic Relationship Map (CEGRM) study of social connections of men in Familial Testicular Cancer (FTC) families, Hereditary Cancer in Clinical Practice, 2012, pp. 2, 10, DOI: 10.1186/1897-4287-10-2