Completed Research Project

Experiences, attitudes, knowledge and psychological status of men from high risk breast cancer families

Investigators: Lobb E A

Superviser: Kristjanson LJ.

Funding: National Health and Medical Research Council  2003-2006 ($256,000)

Administering institution: Edith Cowan University

Abstract: The final stage of this 4 year NHMRC Post Doctoral study was a self report questionnaire that was administered to men who had a family history consistent with a dominantly inherited susceptibility to breast cancer.  This stage of the study aimed to:

  • examine men’s expectations of genetic counselling
  • determine their knowledge of breast cancer genetics
  • investigate their level of cancer related anxiety about the breast cancer in their family
  • determine their risk perception
  • determine interest in genetic testing
  • assess family  communication around familial cancer risk, and
  • assess any level of unresolved grief

Forty five percent (45%) of the participants had previously attended a family cancer clinic and 49% reported they had had genetic testing.   Men considered it most important to receive information about: cancer genes (97%), their own chance of developing cancer (87%); their daughter’s chance (90%), their son’s chance (80%), options for cancer  prevention (82%), what to do for screening (83%) and the pros and cons of genetic testing (84%).  The items men considered less important were: to talk about how it feels to have cancer in the family (67%), help to feel less anxious about cancer (58%); help to decide whether or not to have testing (68%), help to come to terms with own chance of developing cancer (64%), help to face fears about cancer (58%) and emotional support to cope with own situation (49%). The majority of men (93%) did not want assistance in telling their family about a test result. 47% of men preferred a collaborative decision-making style and 38% preferred to make the decision themselves. 64% wanted as much information as possible and 36% wanted only information to deal with immediate issues. Men answered on average seven knowledge questions on breast cancer genetics correctly (range 0 – 11). A logistic regression compared men who had no relatives who had died, to those who had one relative and those who had 2 or more relatives who had died. Men who had 2 or more relatives who had died from breast or ovarian cancer were 6.6 times more likely to want information than those who had no relatives who had died.  There was no statistical difference between men who had 2 or more relatives who had died and men who had 1 relative who had died however, men who had 1 relative who had died were 4.12 times more likely to want information than those who had no relatives who had died. Men with higher levels of cancer related anxiety (intrusive thoughts) as measured by the IES were significantly more likely to want information. It was concluded that cancer burden, that is, the number of relatives who have died from breast/ovarian cancer and cancer related anxiety (intrusive thoughts) in men from high risk breast cancer families is a significant predictor of their expectation for information from the familial cancer clinic.