Multi-Organ Screening Recommendations in Hereditary Non-Polyposis Colorectal Cancer (HNPCC) Patients

The purpose of this study is to examine how people with a family history of colon cancer and other related cancers respond to recommendations for cancer screening after genetic counseling. The purpose of your participation would be to help us learn more about whether people with a personal and/or family history of colorectal cancer and other cancers follow cancer screening recommendations.

Patients seeking genetic counseling with or without genetic testing for colorectal cancer risk and/or suspected HNPCC will be recruited and offered enrollment during their first counseling visit at the Clinical Genetics Service at MSKCC

• Hereditary Nonpolyposis Colorectal Cancer
• Colon Cancer

• Behavioral: questionnaires, telephone interview, optional tube of blood drawn
  Initial CGS Visit (All Prospective Participants)Clinical assessment (screening, family & personal history of CA, surgeries) 6 Month Follow-Up Phone Interview (Prospective) Follow-Up Questionnaire (prospective and retrospective) Retrospective Initial Interview
• Behavioral: questionnaires, telephone interview and optional tub of blood drawn
  Initial CGS Visit (All Prospective Participants)Clinical assessment (screening, family & personal history of CA, surgeries) 6 Month Follow-Up Phone Interview (Prospective) Follow-Up Questionnaire (prospective and retrospective) Retrospective Initial Interview

• 1
  multi-organ follow-up
  Intervention: Behavioral: questionnaires, telephone interview, optional tube of blood drawn
• 2
  control follow-up
  Intervention: Behavioral: questionnaires, telephone interview and optional tub of blood drawn

Inclusion Criteria:

• A patient will be eligible for enrollment if he/she is self-referred or physician-referred for genetic counseling at Memorial Sloan-Kettering Cancer Center's (MSKCC) Clinical Genetics Service due to a concern about increased risk for colon cancer or;
• An individual who presents for genetic counseling at MSKCC's Clinical Genetics Service after undergoing genetic testing at an outside institution with a documented mutation in any gene associated with HNPCC or;
• An individual who in the context of genetic counseling has received stricter colorectal and/or gynecologic screening recommendations than that of the general population regardless of genetic test results.
• DNA of patients who have been consented to protocol 93-102 ("Ascertainment of Peripheral Blood or Saliva Samples for Genetic Epidemiology Studies of Familial Cancers"), who meet the eligibility criteria listed above, will also be eligible for inclusion in this study.

Exclusion Criteria:

• Patients will be excluded from this study if: he/she has physical, cognitive or psychiatric conditions that interfere with ability to give meaningful informed consent; he/she cannot read, write or communicate in English; he/she is less than 18 years of age; he/she has received a diagnosis of FAP.

• National Cancer Institute (NCI)
• Albert Einstein College of Medicine of Yeshiva University