Jewish Health

Caroline - Interview 27

Female
Age at interview: 36

Brief outline: Caroline, a BRCA 2 mutation carrier, has had a double mastectomy. In the future she will consider whether or not to have her ovaries removed.

Background: Caroline is married and has 3 children. Ethnic background/nationality' White British (Jewish)

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Caroline was encouraged to go for screening for the BRCA 2 mutation by an aunt who had ovarian cancer and was a carrier. She eventually went to her GP who sent her away without referral. When her father died of cancer, the family found out that he was also a carrier. Caroline then went for testing with her sister and they were both relieved to find out they were both carriers, rather than just one of them. Caroline describes how the significance of being a carrier didn’t really sink in at the time because ‘it was a lot of numbers reeled off’ and the testing occurred at the same time her youngest child was being treated for congenital heart disease.
 
When she turned 35, Caroline’s mum persuaded her to go for breast and ovarian screening and it was then that she started to read about the implications of being a carrier. She describes how isolating the experience was, at first, and how scary it was to have something at the core of her that would always be there. A series of screening procedures included a mammogram, MRI, yearly trans-vaginal ultrasound and quarterly blood tests for CA125. When the MRI showed shadows on both breasts, Caroline decided to have a double mastectomy rather than live with uncertainty. The surgery, a prophylactic bilateral mastectomy, was delayed a couple of times which Caroline found very stressful but the surgery and reconstruction went well. Her new breasts “do the job and look natural” and her risk of breast cancer has been reduced from 85% to 2%. Caroline will think about whether or not to have her ovaries removed in her 40’s.
 

Caroline describes the two issues that she finds difficult. The main one is whether or not she has passed on the mutation to her daughter and two sons and when to talk to them about possible screening. The other is feeling very guilty in hospital because she was alongside cancer patients who she felt were more deserving of the time and resources. Her advice to other people who discover they are carrying the gene to talk to other carriers. She recommends the BRCA Umbrella website - http'//brcaumbrella.ning.com/ - as a very good resource to enable carriers (or fellow mutants as she describes them!) to talk to each other.  

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