FIVE years ago, Rochelle Gallagher lay on an operating table waiting to have both her breasts removed.
The 27-year-old wasn’t ill. She hadn’t found a lump, she was nowhere near old enough to be screened for breast cancer, yet she was undergoing major surgery.
It was, she says, her only chance and today, as she enjoys the rare sunshine with her daughters, 16-year-old Charlie and 11-month-old Sophia, not only would she do it all again, she knows that they, too, might well have to face the same decision.
Rochelle, now 33, carries the BRCA1 gene – the same gene which prompted Hollywood star Angelina Jolie to have a double mastectomy in an attempt to ward off the disease which killed her mother at the age of 56 and which also claimed the life of her aunt at the weekend.
For the hairdresser from Fernieside, deciding to have the surgery was simple, it would reduce her chance of developing breast cancer from 80 per cent to less than 10. Now she’s also waiting to find out when she can have her ovaries removed to lower her chances of developing ovarian cancer – a decision which prompted her to have Sophia before she could no longer have children.
“I’ve got five children now – two girls and three boys, Ronan, 11, Sonny, six, and Shaun, seven – and they all could have the BRCA1 gene,” she says. “There’s a 50-50 chance of them having it passed on from me. It’s a terrible thing.”
Rochelle’s mum Audrey knows how that feels. She had breast cancer at the age of 29 but it was only when her younger daughter Stacey went to the GP to ask for the Pill did the subject of genetic testing arise.
Audrey was tested first and it took a year for her results to come back – confirming that she was a carrier. “I was devastated,” says the 50-year-old. “It felt like I’d passed on an awful legacy to possibly all my children and my grandkids. The gene apparently comes from my grandad’s side of the family.
“They tested my aunts and then my sisters and brothers, then my daughters. To be honest, I thought Stacey might have the gene because she looks more like me. Silly, I suppose, but it turned out that she’s not a carrier, but Rochelle was.”
Once she knew she had the gene Audrey immediately opted to have her ovaries removed, even though she was also nursing her own mum who was battling a different form of cancer.
For Rochelle, at that point a mum of four with her partner John, it was a clear decision to have a double mastectomy. “I was shocked, of course, when I was told. To be honest, I don’t think it really sank in until about a year after the operation but it was my automatic response. I wanted to have the operation. I mean, they were telling me I had an 80 per cent chance of developing breast and ovarian cancer; it was a ticking time-bomb.
“I was 12 when mum had breast cancer and I saw her go through all that – losing her hair with the chemotherapy – and being ill and I knew that could well have been what was waiting for me. I didn’t want to experience it or put my kids through it – I’d not long had Sonny – so I had the operation.
“I did get counselling before the genetic test but I knew that I wanted to know so I could take positive action rather than wait until I actually had cancer. At one point the three of us [her mum and gran] were all at the hospital at the same time.”
Rochelle had the five-hour operation at the Western General which also involved reconstruction surgery. “I kept my nipples which is why I’ve got about a ten per cent chance now of getting breast cancer. If I’d had them taken away, too, then I think the risk would be even lower. But my risk is now still less than the average woman, so for that I’m really thankful.
“But the BRCA1 gene also affects the ovaries, so I knew I’d have to deal with that at some point,” she says. “That made me want to have another baby before I had them out, so we had Sophia almost a year ago. Now I’m ready to have them removed, too. I think the doctors want to wait until I’m 35 but I’m ready to do it now. I realise it will mean an early menopause, but that’s just something I’ll have to deal with – and I can deal with that much more easily than cancer.”
Not only did she go on to have another baby after her breast operation but she also completed her qualifications in hairdressing at Jewel and Esk Valley College. But the problem for Rochelle now is knowing when to have her own children genetically tested.
“Charlie is 16 now and is developing into a young woman and it’s something that she’s beginning to think about,” says Rochelle. “She has asked me if she has the gene and has been reading about Angelina Jolie and realising that it’s the same thing I’ve been going through – and it’s odd to think their family has been going through exactly the same thing. It’s been a lot for her to take in.
“She is probably still too young to go through the test though and have that knowledge, but we’ll all have to face it with her at some point. And, of course, I’ll have to talk to Sophia about it as well when she’s older. My boys, too, could have the gene so they need to know for their own health and if they go on to have families of their own when they’re older.
“It is a ticking time-bomb. And as a mum it feels terrible to know you’ve possibly passed that on to your children. I know that’s how my mum feels as well. But I would urge anyone to find out.”
Younger sister Stacey took the test and the result came back negative. “So my two daughters are safe from it as well,” she says. “But at the same time it means I’m not likely to be screened for it until I’m in my 50s and in fact my risks of getting it are now higher than Rochelle’s. But the whole thing has made me much more aware of checking myself.”
Audrey, of Northfield, adds: “It is terrible but also a wonderful thing that research has meant we know we have this gene and so my family can take steps to deal with it. I do think that Rochelle’s decision will prolong her life and I also think her having her ovaries removed is very important. No-one from my dad’s side of the family has seen retirement age because of this gene and that could now change. My cancer has come back and I’ve now had a mastectomy as well which I’m still recovering from. But I’ve been going to the oncology unit at the Western for 21 years. Cancer isn’t a scary word in this family.”
Tests available to check for faulty genes
faulty genes are the underlying cause for about five to ten per cent of breast cancers. Breast cancer 1 (BRCA1) and breast cancer 2 (BRCA2) are genes which belong to a class of tumour suppressors.
BRCA1 and BRCA2 account for approximately a fifth of familial breast cancers. A woman’s risk of developing breast and/or ovarian cancer is greatly increased if she inherits either of the genes.
Men with these mutations also have an increased risk of breast cancer.
Both men and women who have the harmful genes may also be at increased risk of other cancers.
Genetic tests are available to check for the genes, and for this a blood sample is required. Genetic counselling is recommended before and after the tests.
If a harmful BRCA1 or BRCA2 mutation is found, several options are available to help a person manage their cancer risk.
Women who have risk-reducing mastectomies can reduce their risk of developing breast cancer to less than five per cent over their lifetime, which is less than the risk in the general population.
Many studies are being conducted to find newer and better ways of detecting, treating, and preventing cancer in BRCA1 and BRCA2 carriers.