My BRCA test is pos­i­tive : what next?

The Jewish Chronicle - - JC SPECIAL - The same risk may lead to dif­fer­ent choices

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

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