Screening adherence and cancer risk perceptions in colorectal cancer survivors with Lynch-like syndrome.
Cancer screening recommendations for patients with Lynch-like syndrome (LLS) are not well defined. We evaluated adherence to Lynch syndrome (LS) screening recommendations, cancer risk perceptions, and communication within the families among colorectal cancer (CRC) survivors with LLS. Thirty-four participants with LLS completed a questionnaire about risk perception, adherence to LS screening recommendations, and communication with relatives. Clinical data were obtained from medical records. Most participants (76%) believed they should undergo colonoscopy every 1-2 years. Only 41% correctly interpreted their genetic tests as uninformative negative or as variant of unknown significance for LS. Less than half had had an upper gastrointestinal endoscopy for screening purpose. Among female participants, 86% had been screened for endometrial cancer (EC) and 71% for ovarian cancer. Most participants had informed relatives about the CRC diagnosis and advised them to undergo CRC screening, but only 50% advised female relatives to be screened for EC and only one-third advised relatives to have genetic counseling. Most CRC survivors with LLS follow the same cancer screening recommended for LS patients but do not understand the meaning of LLS. Greater care must be devoted to communicating the implications of nondiagnostic germline mutation testing among patients with LLS.
Department of Gastroenterology, Hepatology and Nutrition, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.|Department of Gastroenterology, Sheba Medical Center, Tel-Aviv University, Ramat-Gan, Israel.
L H
LH
Katz
Department of Behavioral Sciences, Sheba Medical Center, Tel-Aviv University, Ramat-Gan, Israel.|Department of Basic and Social Sciences, Albany College of Pharmacy and Health Sciences, Albany, NY, USA.
A M
AM
Burton-Chase
Department of Gastroenterology, Hepatology and Nutrition, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.
S
S
Advani
Department of Biostatistics, Sheba Medical Center, Tel-Aviv University, Ramat-Gan, Israel.
B
B
Fellman
Department of Behavioral Sciences, Sheba Medical Center, Tel-Aviv University, Ramat-Gan, Israel.
K M
KM
Polivka
Department of Biostatistics, Sheba Medical Center, Tel-Aviv University, Ramat-Gan, Israel.
Y
Y
Yuan
Department of Gastroenterology, Hepatology and Nutrition, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.
P M
PM
Lynch
Department of Behavioral Sciences, Sheba Medical Center, Tel-Aviv University, Ramat-Gan, Israel.
S K
SK
Peterson
D000328:Adult; D000368:Aged; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000175:diagnosis / Q000235:genetics / Q000523:psychology*; D055088:Early Detection of Cancer / Q000523:psychology*; D016099:Endoscopy, Gastrointestinal / Q000523:psychology; D005260:Female; D005817:Genetic Counseling / Q000523:psychology; D005820:Genetic Testing; D006801:Humans; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance; D010465:Perception; D012306:Risk; D011795:Surveys and Questionnaires; D017741:Survivors
HNPCC; Lynch syndrome; Lynch-like syndrome; colorectal cancer; screening