“The Cancer Bond”: Exploring the Formation of Cancer Risk Perception in Families with Lynch Syndrome

Abstract

This study explores the social context of hereditary cancer risk perception in three families, an African-American family, a Mexican-American family, and a Caucasian family, each with Lynch Syndrome documented by a mismatch repair gene mutation. Communication network assessments measured family communication about cancer experiences and genetic testing information among a total of 26 participants. Participant narratives were evaluated to gain insight into how family cancer experiences and genetic testing information have shaped perceptions of cancer risk. Analysis of communication networks indicated that some families discussed cancer experiences to a greater extent than genetic testing information, and vice-versa. Interviews elucidated that sharing both types of health information led participants to conceptualize linkages among a strong family history of cancer, genetic testing information, and cancer prevention strategies. Understanding how different types of family communication influence the formation of perceived hereditary disease risk may enhance efforts to tailor genetic counseling services for families.

Families’ experience of oncogenetic counselling: accounts from a heterogeneous hereditary cancer risk population

“…Only 4% of participants were non-carriers, 30% were former cancer patients, and 66% were mutation carriers. In the light of these results, one might hypothesise that families perceived the family interview as directed to those who were primarily linked by the illness or at-risk status, under the gaze of the ''cancer bond'' [10]. On average, each interviewed family represented 3 households (27/9), including 2-3 generations.…”

“…Family history and formation of risk awareness Findings elucidate the pivotal role of the cumulative effect of cancer-related events (diagnosis of cancer, cancer recurrence, and deaths) in giving rise to increased concern about cancer risk [10]. Each person starts by comparing the history of cancer-affected relatives with their own history and the history of their children; for instance, reaching the age of the affected mothers seemed to add a supplementary feeling of vulnerability to HBOC [58].…”

“…Despite some exceptions [8][9][10][11], those studies which involve or are about families and genetic counselling issues have focused primarily on the proband and related specific relationships, not fully considering the familial environment and interactional milieu in the family system. Our study is not limited to relationships involving the proband, as we have decided to also include other family members.…”

Pediatric cancer and Li-Fraumeni/Li-Fraumeni-like syndromes: a review for the pediatrician

“…44,45 The risks and benefits both of revealing and of withholding a clinical or molecular diagnosis of cancer predisposition have been the subject of extensive debate in the literature. [46][47][48] Psychological harm may be involved in issues such as increased worry about cancer risk, the need for periodic laboratory and imaging tests and the anxiety that precedes and follows them, and the burden of testing itself. Some studies have found that a passive, pessimistic coping style, low social aspirations, and precarious social support networks also have a negative impact on mutation carriers, as does negative perception of the disease and the risk of cancer itself.…”

Characterization of the Hispanic or Latino Population in Health Research: A Systematic Review

“…: [42, 44, 49, 60, 68, 70, 87, 89, 106, 107, 116, 135, 140, 141] b Refs: [86, 94, 130] c Refs: [23, 24, 28–30, 45, 51, 71, 72, 76–78, 98, 103, 109–111, 117, 127–129, 131, 132, 138, 139, 142, 146, 147, 153] d Refs: [33, 34, 36, 40, 57, 67, 69, 83, 95, 97, 102, 118, 122, 148, 149, 152] e Refs: [55, 85, 105, 126, 130] f Refs: [43, 46, 52, 66, 73, 74, 79, 80, 88, 90, 92, 99–101, 104, 108, 114, 136, 143, 154] g Refs: [27, 31, 35, 38, 39, 41, …”