For five sisters, a cancer gene spelled the beginning of a battle - united against the odds, writes Ann-Marie McFaul
WHEN BRONAGH Conlon found a lump in her breast, she immediately tapped into a reservoir of fear that has been quietly shared by the women in her family for generations.
A surprisingly high number of women in the Conlon family have succumbed to the ravages of either breast or ovarian cancer.
"My eldest sister, Mary, had breast cancer, we had an aunt who died of ovarian cancer and another aunt who developed breast cancer but survived and my grandmother also died of breast cancer.
"I just had to know if there was a link between all this and what was happening to me. And my consultant at St Vincent's said immediately that he thought this was a genetic cancer."
Eventually, after an agonising wait, and following her breast cancer treatment including chemotherapy, Bronagh was told that she did have a faulty gene - known as BRCA1.
Being a gene carrier means women like Bronagh have a 75 per cent chance of developing breast cancer and a 40 per cent chance of developing ovarian cancer.
A "normal" risk level for the general population is about 12 per cent.
But it's not just the high risk of developing the cancers that women like the Conlon sisters have to fear - it's the fact that the type of cancers they develop are often highly aggressive and difficult to treat.
The lump that Bronagh found in 2006 was a mere 5mm - yet two weeks later when she had a lumpectomy in St Vincent's it was already 15mm.
"The doctor was amazed that I had been able to find something so small. And it may have been small, but it was spreading so rapidly that it has already gone into my nodes.
"I had a lumpectomy first, but then I had to have a total node clearance - that was the worst of all my operations. Even now I have numbness from my elbow to my shoulder bone because of it."
But as she underwent the exhausting round of testing, operations, chemotherapy and radiotherapy, Bronagh was ever-conscious that there were major implications for the other members of her extended family - particularly her four sisters.
"I knew when I went for this genetic test that this would not just be about me - I was very conscious of that. It would be about all my family, my sisters, my brothers and their children and even my cousins and their families, and that has proved to be the case."
The middle of five sisters - and there are two brothers in the family as well, all born within eight years of one another - Bronagh and her family enjoyed a happy upbringing on their family farm outside Armagh city run by their father Arthur (who died in 2003) and their mother Kathleen (72).
"Unusually the gene which we have comes through your father's family, although he died without ever knowing he had passed on this gene. He would be devastated if he had known.
"Even now, I often feel he was watching over me in that I found a lump so early and so small that it could be treated."
And when the confirmation about the BRCA1 gene came through in June last year, 43-year-old Bronagh, a mother of three, had no doubts about what she would do.
"I booked in straight away to have a full hysterectomy. I knew if I had that done it would reduce my risk of developing ovarian cancer. I felt like a time bomb was ticking away inside me and after the surgery, I didn't even feel the pain - just the relief of feeling safe."
But her proactive attack against the gene inside her didn't stop there. Bronagh went on to have a double mastectomy in order to cut her risk of developing breast cancer again to normal levels.
And now three of her sisters, all of whom have tested positive as carriers of the BRCA1 gene, have gone down the same radical surgery route, despite not currently having cancer in their bodies - a choice that more women like them are making.
In the past six weeks Mary (45) and Caroline (44) have also had double mastectomies, having previously had their ovaries and Fallopian tubes surgically removed - an operation known as an oophorectomy.
For eldest sister Mary, who had already experienced the trauma of breast cancer and treatment 10 years ago, the decision to have her breasts and ovaries removed was frightening, but necessary.
"I was anxious, naturally, about the surgery but I still feel lucky to have this option. The generation before didn't; my grandmother certainly didn't, nor my aunts.
"Having this information about our genes has given us the chance to take positive action to maximise our chances so that this gene cannot wreak havoc in the way that it could if we all went on to develop the cancers."
For her sister Caroline, a mother of four, who, along with husband Peter, runs the well-known Cuan restaurant on the picturesque shoes of Strangford Lough, the decision seemed easier. "I really didn't have any trouble with it. I'm not sentimental about my body parts. For me, my personal health and safety significantly outweigh the cost of what I have had to do," she says.
Now it is 40-year-old Bernie Conlon's turn - she awaits surgery in the Ulster Hospital in Belfast later this summer.
And, although she is extremely nervous about the operations, Bernie is very clear about why she feels compelled to make this decision.
"There is no question of not doing it. Watching what Bronagh went through having cancer and treatment made it easier to make the decision. There is no other choice in my mind.
"That is not to say I felt like that right away. When I got the news at first, I was in denial and then there was this explosive meltdown. It was like walking through treacle trying to get through everyday life," she says.
Undoubtedly, these are life-changing decisions the women have faced. Yet through it all, these remarkable sisters have had to find the strength to push on with their normal lives, in their careers, and as mothers and wives.
For Bronagh, who trained as a nurse in Belfast before becoming a midwife and moving to work at Beaumont Hospital, her life took a different direction some years back.
"I had always been interested in catering and when I was leaving school I literally took a 50 pence coin and tossed it to decide whether or not to become a nurse or to go into hotel and catering - and it came down on the side of nursing.
"I never regretted that - I loved nursing and had happy years in all the places I worked. But when I was on maternity leave with my oldest daughter, Sarah, I was asked by a friend to do some catering for a party.
"I've always liked entertaining, and it seemed like a fun thing to do, but within a fairly small space of time I had moved into baking cakes and making jams and sauces and then into factory production," she explains. And from that small beginning the Real Irish Food Company was born.
It was just a year before she was diagnosed with breast cancer that she sold her growing company to Jacobs Fruitfield, although she still works on as a speciality food manager at the small factory near her home outside Monasterboice.
"I have been very lucky, as my employers have been very good at allowing me time off work to have my treatments. But because I live so close to the factory I have always been able to keep in touch with what is going on."
There is an incredible bond between these sisters - it was a bond that was forged before they knew they were tied by the BRCA1 gene as much as by their blood ties, but they feel it has gotten stronger in recent years.
As Bernie says of Bronagh and Mary's experiences: "If it hadn't been for them and what they went through, I wouldn't be in a position where I can choose to have surgery to reduce my risk so significantly."
Mary adds: "I can't begin to contemplate what it would be like to make these decisions without them and the support and love that is there."
And as she and Caroline recuperate from their major surgery and Bernie waits for her operation date, it is now 41-year-old Theresa's turn to wait and see if the same fate awaits her that has befallen her sisters.
She has spent the past year travelling around Europe with her two young children and her husband, having returned from 10 years living in New Zealand.
"We had already planned this trip before Bronagh's news broke, and some people thought I should come home straight away and get tested, but I thought long and hard about it and spoke to a gene specialist who said 'enjoy your holiday and then get tested', so that's what I decided to do," she says.
But she knows now that she has finally settled in her new home in Cornwall that she will be getting her test done shortly.
"It is scaring me quite a lot - seeing what my sisters have gone through. And I think the chances of my not having the gene are quite low.
"But they have all been quite pragmatic about it and I think I'll have to be too."
Despite the emotional lows of the past two years, Bronagh and her sisters feel they have made the decisions that are right for them.
"Without a doubt it was the right decision. The biggest thing is I now see a future. I'll see the kids grow up and go to college. Life to me is really about enjoying what you have and living the moment. Life is good, and it's going to be fine," says Bronagh.
• The Conlon sisters have a website: www.thegenerationball.com