The least welcome Ashke­nazi heir­loom

The Jewish Chronicle - - JC SPECIAL - BY GINA BEN­JAMIN

THIS IS ovar­ian can­cer aware­ness month — but how aware of this dis­ease are we, really? Many women con­tinue to confuse it with cer­vi­cal can­cer and think that, be­cause their smear test was clear, they do not need to worry about ovar­ian can­cer either.

“Lots of women think a cer­vi­cal smear it can de­tect ovar­ian can­cer but it will not,” says Allyson Kaye, founder and chair of Ovar­ian Can­cer Ac­tion. “Ovar­ian can­cer is much more lethal and Ashke­nazi women in par­tic­u­lar should have it on their radar.”


Per­sis­tent stom­ach pain Per­sis­tent bloat­ing, con­tin­u­ally feel­ing as if you are preg­nant, in­crease in stom­ach size

Dif­fi­culty eat­ing or feel­ing full quickly Need­ing to uri­nate more fre­quently

Look out for these symp­toms and do not be em­bar­rassed to go to your GP.

Be­fore you do, you may wish to fill out a symp­toms diary, a con­cept de­vised by the char­ity and which has been adopted by or­gan­i­sa­tions world­wide. A pa­per ver­sion can be down­loaded from ovar­ or use Ovar­ian Can­cer Ac­tion’s new app. (Sim­ply en­ter the char­ity’s name in the app­store; the app is free, cov­ers ad­di­tional symp­toms and al­lows you to add your own.)

“The diary will give you the con­fi­dence to go to your GP and talk with au­thor­ity about some­thing be­ing wrong,” says Kaye. “Since start­ing the char­ity, it has changed the way I talk to doc­tors. I think I al­ways ex­pected them to be a ma­gi­cian but now I know that sci­en­tific peo­ple love ev­i­dence.”

It is im­por­tant to catch ovar­ian can­cer as soon as pos­si­ble. At an early stage it is very treat­able but at a later stage it is a killer — we are talk­ing a 90 per cent chance of sur­vival against a 22 per cent chance. “Get to it early be­fore it spreads,” says Kaye.

Kaye’s un­der­stand­ing of the sci­en­tific back­ground to ovar­ian can­cer be­gan when her own mother died of the dis­ease, aged 48 and her fa­ther set up a think tank, which Kaye ran. She started Ovar­ian Can­cer Ac­tion 12 years ago, want­ing to share her knowl­edge of the symp­toms with women. The char­ity now runs prob­a­bly the big­gest ovar­ian can­cer re­search cen­tre in Europe.

One of the key re­search find­ings in the past few years has been the role of BRCA gene mu­ta­tions. If you are Ashke­nazi, your risk of de­vel­op­ing ovar­ian can­cer may be in­creased by an in­her­ited gene — BRCA 1 and 2 (Ashke­nazim are 10 times as likely as the gen­eral pop­u­la­tion to be BRCA car­ri­ers). But many in the com­mu­nity are reluc­tant to talk openly about ge­netic risks. “Peo­ple are fright­ened of la­belling their fam­i­lies,” says Kaye.

The gene mu­ta­tion can be in­her­ited on the fa­ther’s side; it does not have to be the mother’s. Nor need the can­cers be gy­nae­co­log­i­cal. A suc­ces­sion of dif­fer­ent can­cers in your fam­ily his­tory might “wave a flag”, as Kaye puts it. The Ovar­ian Can­cer Ac­tion web­site has an on­line tool to help you as­sess your risk. Ask rel­a­tives for as much de­tail as they can give you about their can­cers, to help use the tool ef­fec­tively.

Celebrity cases have helped spread the word. An­gelina Jolie opted for a dou­ble mas­tec­tomy and re­moval of her ovaries and fal­lop­ian tubes af­ter her mother died of ovar­ian can­cer and she found she had the BRCA gene, while Pierce Bros­nan lost both his wife and his daugh­ter to the dis­ease.

Jolie’s surgery proves it is pos­si­ble to

Allyson Kaye evade one’s ge­netic in­her­i­tance but Kaye says ex­cit­ing re­search is in the pipe­line to pro­vide pro­tec­tive op­tions that will be less harsh.

It is al­ready pos­si­ble, if you have not yet had chil­dren and have been iden­ti­fied as a BRCA car­rier, to choose which eggs to fer­tilise and so avoid giv­ing birth to a child with the BRCA mu­ta­tion. “We now know at least 17 per cent of ovar­ian can­cers are ac­counted for by BRCA 1 and 2,” says Kaye. “We think it may be as high as one in five. If we could stop all those peo­ple get­ting can­cer, we could save 1,000 lives a year. But it is up to us to go to the doc­tor about it.” Ovar­ian Can­cer Ac­tion re­searchers at Ox­ford Univer­sity have found two pro­teins in the fal­lop­ian tube that may lead to the devel­op­ment of a na­tional screen­ing tool. Around £1 mil­lion is needed to fund this re­search fur­ther. Breast can­cer cur­rently re­ceives six times as much fund­ing as ovar­ian can­cer. “Re­search shows that if you fund a dis­ease it cor­re­lates with im­prove­ment in sur­vival,” says Kaye.

At the mo­ment, lung and pan­cre­atic can­cer are the only ones with a worse mor­tal­ity rate than ovar­ian, although things are im­prov­ing. “Ovar­ian can­cer really was a death sen­tence when my mum got it. One and a half years af­ter di­ag­no­sis, you’d be lucky to still be alive. Now many women are alive af­ter 10 years. They may have had a re­cur­rence but they’re still alive. For women who do dis­cover they have ovar­ian can­cer, “treat­ment is mostly suc­cess­ful,” says Kaye “but over time women be­come re­sis­tant to chemo­ther­apy. We do a lot of work in keep­ing away that re­sis­tance. “Ovar­ian can­cer tends to come back but there are lots of lines of treat­ment, so what we’re try­ing to do now is fund re­search to cre­ate many lines of treat­ment.” Promis­ing new ar­eas are im­munother­apy — a tablet or vac­cine to take af­ter chemo, to make our own im­mune sys­tem kill the can­cer — and mi­cro­biome re­search (ex­am­in­ing the pos­si­ble can­cer-pro­mot­ing ef­fect of sub­stances in the gut). “When ovar­ian can­cer runs through a fam­ily, it’s heart-rend­ing,” says Kaye.

“So if, as a com­mu­nity, we can do any­thing about stop­ping the next gen­er­a­tion from suffering, it will be a great thing. “I’d like the com­mu­nity to take no­tice of this, be­cause we could save many lives and help the next gen­er­a­tion to side­step can­cer.”

Help the next gen­er­a­tion side-step can­cer’

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