Thursday 20 June 2019

Three Irish sisters who carry same deadly gene as Angelina Jolie

When Eileen O'Molloy tested positive for BRCA1, she was relieved. Her grandmother was just 46 when she died from the disease, her aunt carried the gene and she knew two of her siblings were at risk. She tells Chrissie Russell why she feels she's been given the gift of life

From left: Louise Keville, Mary McCarthy and Eileen O'Molloy
From left: Louise Keville, Mary McCarthy and Eileen O'Molloy
Eileen O Molloy, Straffan, Co. Kildare

Chrissie Russell

Nurse Eileen O'Molloy never expected to have something in common with Hollywood's highest-paid actress.

"I wish it was a nicer link," she laughs dryly - perhaps the wealth or jet-set lifestyle - but instead the mum-of-three knows something of what Angelina Jolie is going through after also having had her ovaries and fallopian tubes removed.

It was January 2011 when 39-year-old Eileen tested positive for carrying the same 'faulty' BRCA gene as Jolie, leaving her at a dramatically higher risk of ovarian and breast cancer.

"I remember bursting into tears," she says. "I was listening to how I would have to come in for mammograms, MRIs, blood tests and tests for bone disease and I just thought, 'God, I'm going to be in and out of hospital for the rest of my life'."

But there was also another reason for her tears. "I think it was a relief," she says. "At least now I knew."

It might sound like a surprising response but, in reality, Eileen had been expecting the result, being the third of her sisters to test positive for BRCA1.

The family learned of the danger facing them from their aunt on their father's side, Rita Coleman, who tested positive and alerted them to the possibility that they too might carry the deadly gene. Rita had undergone gene testing herself after being diagnosed with breast cancer. Her own mother, Eileen's grandmother, had died from the disease aged just 46.

Out of the five girls in Eileen's family, three of them - eldest Mary McCarthy, Louise Keville and Eileen - were found to carry the gene, second-eldest sister Suzanne Doherty did not, and youngest Donna Rigney (35) has yet to be tested.

"As soon as we knew about it, we all wanted to be tested," says mother-of-three Eileen. "We were actually so grateful to Rita for letting us know. It's not something that anyone wants to go through but it would be so much worse not to know or find out when it's too late."

She adds: "The only reason I waited even a little while before going for the test was because I wanted to be sure I'd finished having my family. I wanted that decision to be based on what my husband and I wanted rather than have it dictated to me by the fear of cancer. I wanted to be in control."

The desire to take control was echoed by Jolie, who has written about her decision to proceed with surgery two weeks ago (see page 42).

"It is not easy to make these decisions," she wrote. "But it is possible to take control and tackle head-on any health issue. You can seek advice, learn about the options and make choices that are right for you. Knowledge is power."

She also revealed: "I know my children will never have to say, 'Mom died of ovarian cancer."

Family were also at the forefront of Eileen's decision to have a laparoscopic bilateral salpingo-oophorectomy (the same procedure as Jolie), removing her ovaries and fallopian tubes in September 2012 and a double mastectomy last October.

"It was a no-brainer to get the ball moving. I had the ovaries out first because ovarian cancer is the silent killer and also I'd finished with them, I didn't need them any more.

"My big concern was about menopause but actually it hasn't been nearly as bad as I thought it would be. I also think I'm better going through it now when the children are young and I haven't time to think about symptoms or wallow in a ball of self-pity.

"I knew I didn't want to have a situation where my family had to see me sick all the time or having to go through chemo."

But while she's no longer at risk, Eileen still worries that her children, aged eight, five and three, may have inherited the faulty gene and worries what gene testing might mean for them, especially her only daughter's decision about having children.

"My only consolation is that I've time on my side and the science around cancer care and genetics is always evolving," she says.

But she remains fiercely positive about the fact that the BRCA test was available to her.

"I see it as a hugely positive thing, that I was able to have the test and take action. Instead of having a death sentence hanging over me, I feel I've been given the gift of life. My grandmother died at 46 - that would have given me just another seven years. Yes, this has been a tough couple of years, but if we hadn't known about the gene it could have been so much worse."

Eileen's sister Mary had an oophorectomy and double mastectomy, while her sister Louise had an oophorectomy and is scheduled to have a double mastectomy in two weeks' time.

"In many ways, it's been a huge support that we're all in the same boat and my husband has been wonderful. Reconstructive surgery has been tough going but he still looks at me like I'm the woman he married."

She thinks it's important to have someone as well-known as Jolie speak out.

"When I'm talking to people about my experience, I always refer to the gene as 'the one that Angelina Jolie has' and they know what I'm talking about," laughs Eileen. "I think she's done a lot to bring awareness to the existence of BRCA and hopefully more women have a better understanding of their options because of her.

"When I see her now, I can't help thinking, 'I wonder how she's coping', or wondering if any of the menopause symptoms she's experienced are the same as me. I never thought I'd have anything in common with her, but in a strange way I feel like I do."

 

'THE IDEA OF MENOPAUSE AT 40 JUST TERRIFIES ME'

Even when it could save your life, electing to have major surgery isn't always an easy choice to make. Dublin mother-of-four Bronwyn Kane explains...

"It's not a decision that's just based on logic. I found out I carried the faulty BRCA gene in 2010 after being tested because of a family history (my mother and grandmother both had breast cancer).

"Since then I've had both breasts removed as well as one ovary and my fallopian tubes, because new research suggests a lot of cancers are coming from cells developing on the tubes.

"When my left breast was removed it was entirely pre-cancerous, but even though I've had that scare, I'm still hanging on to that one ovary.

"Part of it is fear of the unknown. I've suffered hormonally in the past and the idea of menopause at 40 terrifies me.

"Also, I feel going through the double mastectomy and being in and out of hospital recuperating from surgery and reconstruction, has taken its toll on my husband and children, who have been immensely supportive. "Some people might say, 'well, they need you here more', and that's true, but I know myself and I know we need a year to regroup and I need time to recover and go into the surgery ready to deal with it.

"It's a very personal decision and I think every woman deals with it differently but I'm hoping to start a new form of HRT and, if that goes well, I'm resolved to have the last ovary out in January next year. But it's certainly not a black-and-white choice or an easy decision to make."

 

WHAT DOES THE GENE MEAN?

An oophorectomy (ovary removal surgery) is a treatment option for women at heightened risk of breast and ovarian cancer, either from previous cancer diagnoses, family history or carrying the faulty BRCA gene.

The BRCA mutation can be detected with a CA 125 blood test. Screening is generally only considered necessary where there is a family history of breast and ovarian cancer.

Every woman is born with the BRCA1 and BRCA2 genes. It's only when a mutation occurs in these genes that a greater risk of breast and ovarian cancer is posed.

Women carrying the faulty gene have a 50-85pc lifetime risk of developing breast cancer and 10-40pc lifetime risk of developing ovarian cancer.

The genetic risk of cancer is still relatively low. Only between five and 10pc of breast cancer diagnoses are caused by genetic mutation. Age and lifestyle are more common factors.

Treatment depends on the individual. Naomi Fitzgibbon, Cancer Information Services Manager at the Irish Cancer Society, explains: "Some women might decide that any risk warrants preventative surgery while others, who perhaps still want children, might decide to wait and in that case they'll have frequent scans and be closely monitored.

"It's not a simple case of 'I carry the gene therefore my ovaries have to come out'. The most important thing is for anyone concerned about the issue is to be familiar with the European code of cancer, know your family history and discuss any concerns with your GP."

For more information see www.cancer.ie or call the National Cancer Helpline on 1800 200 700 to speak to a specialist nurse.

Irish Independent

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