My BRCA test is positive : what next?

NEWSPAPERSHAVE carried many stories lately about women opting for pre-emptive surgery as a way to reduce their r i s k o f d e v e l - o pi ng c a ncer . I n p a r t i c u l a r , Angelina Jolie, who lost her mother, aunt and grandmother to cancer, has raised awareness of the genetic link, talking frankly about her double mastectomy and the removal of her ovaries and fallopian tubes after testing positive for the mutated BRCA 1 gene.

Mutations in the BRCA 1 and 2 genes are strongly linked to an increased chance of breast cancer or ovarian cancer in women and breast and prostate cancer in men. The Ashkenazi population has a high rate of carriers of BRCA mutations — about 1 in 40 compared to 1 in 800 in the general population.

Though not everyone testing positive will get cancer, women are now offered various options to reduce their risk, including removal of the ovaries and fallopian tubes, breast removal or annual breast screening by MRI or mammography.

Cancer charity Chai has responded to the increasing number of people who know they are carriers by forming a BRCA support group. Barbara Prager is a senior counsellor and one of its co-facilitators. “The group lets clients explore their feelings and emotional responses to a positive test result and to hear from others,” she says. ‘Knowing you are not alone is so important, because even with a supportive family, the impact of a positive result can be very isolating. The group offers comfort, taking you out of that lonely place.” The group meets every three weeks and clients can come at any stage of their BRCA journey.

“When I discovered I carried a mutated BRCA gene, I also discovered what a grey area this is,” says Janine*. “There are so many choices and the paradox is that you’ve tested positive but you’re healthy.”

Clients talk about being on an emotional rollercoaster as they grapple with their dilemmas and fears: the impact on their marriage or relationship; how — or whether — to tell the children; other people’s reactions; the ramifications if you’re single; whether to have children, or more children; feelings about possible surgery.

“All these affect a person’s life plans and it is up to each individual to decide how to go forward,” says Barbara. “Some may choose surgery while others will adopt a watch-andwait approach. Members of one family, faced with the same risk, may make different choices and the decision is absolutely personal to each client. But with support from the group, they can feel more able to decide their response.”

Mandy* has had a preventative double mastectomy and reconstruction since attending the group. “Being able to discuss the choices and my emotions surrounding my decision definitely strengthened me,” she says.

Emma’s* experience also illustrates the group’s value. “Some friends react like you’re dying: ‘Oh you’re so brave’; others like you’re stupid: ‘what are you waiting for? Get everything removed now!’ Meeting women at the group has eased the feelings of ‘why me?’ Our sessions can be filled with laughter or tears but they always give us muchneeded support and compassion, and a platform to voice our feelings.” *Names have been changed to protect client confidentiality. The Chai BRCA Awareness Campaign is sponsored by the family and friends of Debra Persey. Call Jo Awad on 0208 202 2211 or see chaicancer.org for details of the BRCA support group. One-to-one counselling is also available

Annual breast screening forms part of a watch-and-wait approach