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)