Jewish Health

BRCA mutations and preventive surgery and treatments

Usually people who want to find out if they are a carrier of a mutation on the BRCA gene see their GP who refers them for screening at a specialist cancer hospital, where a blood test is taken. Genetic counselling is recommended before having the screening test (NHS.UK 2019). People were impressed by the support and information they received during the screening process. They were also often shocked by their diagnosis (see Feelings about diagnosis).
When people discover they are a carrier of the mutation, they can choose to have regular screening to closely monitor changes in their breasts or ovaries. This usually involves CA-125 blood tests (ovarian cancer screening test), and a yearly trans-vaginal ultrasound, a yearly mammogram and an or MRI (for breast cancer screening). The type of scan used for monitoring will depend on factors such as age, whether there is a known BRCA mutation,or how likely this is. The specialist clinic will decide this and advise the individual. Caroline entered the UK-FOCCS study (Familial Ovarian Cancer Screening Study), which provided screening using a CA-125 blood test every four months and an annual ultrasound scan.
An alternative to regular screening is the option of preventative surgery to remove the breasts (mastectomy) or ovaries (oophorectomy) or preventative medication chemoprevention (see below).
Making this decision was very difficult for the women we spoke to. (See Feelings about diagnosis) Some women found it easier to have one of the operations than the other. For example Hayley found it easier to decide to have her ovaries removed because she'd already had her children, than to have a mastectomy. When Karin discovered that she was a BRCA carrier with a 90% risk of developing breast cancer, she said it was an “incredibly positive experience to be given an opportunity to be proactive” and immediately after getting her results she knew she wanted to have a double mastectomy.
Some women found the decision to have their ovaries removed harder. Michelle didn’t want to have an early menopause but eventually decided to go ahead with the preventative surgery. Karin and her husband, who have one daughter, decided not to have any more children and to have her ovaries removed.
Caroline’s decision to have a double mastectomy was reinforced when a mammogram showed she had shadows on her breasts. Caroline and Karin both had their operations cancelled at least once because another patient needed the bed. Karin said, “I mean I was covered in black marker. I’d psyched myself up and was at that point, a total wreck”. Caroline, who had a double mastectomy and a reconstruction on the same day, said the build up to the operation was more stressful than the operation and recovery afterwards.
Reconstruction after a mastectomy can either be done during the same operation or at a later date. A new breast shape can be made by removing all the breast tissue and inserting an implant or by restoring the shape using tissue from another part of the body.
Karin, who had reconstructive surgery using tissue taken from her stomach, had a 14 hour operation. Her stomach was very tender which had made her recovery longer. She is now waiting to have an operation to have the nipples put on her new breasts.
Both women were pleased with the results of their operation although Caroline reflected on feeling uncomfortable having the operation on a cancer ward.
See more experiences of mastectomy in our 'Breast cancer in women' section.

For carriers of the BRCA gene mutation, having an operation to remove the ovaries reduces the risk of ovarian and breast cancer. Most people who had an oophorectomy talked about it being a relatively straightforward operation. Hayley had her ovaries removed when she was 40 years old, by keyhole surgery. She left hospital the day after her operation and within three days she was feeling much better. After the same surgery, Karin explained that she had tummy ache and felt tender for a week and then she felt back to normal.
One of the major side effects of an oophorectomy is that it is accompanied by a premature menopause. Menopausal symptoms such as hot flushes, night sweats and mood swings can be managed through Hormone-replacement therapy (HRT). Hayley and Karin both took Tibolone [also known as Livial], a form of HRT, and they were pleased that they suffered few symptoms.
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Women at significant risk of developing breast cancer can now take preventative medications instead of having preventative surgery. This is called chemoprevention. The most common medications are: tamoxifen for women who either have or haven't been through the menopause, raloxifene and anastrozole for women who’ve been through the menopause. These medications work by blocking the effects of oestrogen on tissues. Using these medications would be a decision made with specialist genetic doctors, and would involve balancing up the possible risks and benefits (NHS.UK 2019).

Last reviewed May 2019.
Last updated May 2019.


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