Wednesday 24 July 2019

'Cancer does not have to be a life sentence'

Carrying a dangerous gene, Emma Hannigan had radical surgery, only to have her worst fears realised. Sue Leonard hears her story

Imagine being told that you have an 85pc chance of developing breast cancer. And if you escaped that, you also had a 50pc chance of contracting ovarian cancer? It is unthinkable. But that's exactly what happened to Emma Hannigan from Bray, back in 2005.

Emma was just 31. She had a loving husband and two beautiful young children. Just how did she cope hearing that she carried the specific mutation called the Ashkenazy Jewish gene?

"I wasn't surprised," she says. "There was a lot of cancer in the family. Two aunts survived it but one did not. I was glad I knew about it.

"I had that living memory demon of my aunt's death. I thought, 'I'm not taking that chance'." And she didn't.

In 2006 Emma went into Tallaght Hospital for a double mastectomy. And then, in October, came the lengthy process of reconstruction using muscle expanders.

In between the mastectomy and the reconstruction, Emma had surgery to have her ovaries and fallopian tubes removed. Did she grieve that loss of fertility?

'Not really," she says. "I had a twinge the first time I saw a baby after the surgery, but Cian and I had decided, long before we heard of the gene, that we weren't having more children."

It was a gruelling year. There wasn't just the pain to cope with -- there were also the body changes, the loss of fertility and the early menopause. Emma's surgery was cancelled -- twice -- and she was once sent home the day of an operation.

"That was terrible. You are all prepared, the children are organised, and an hour before we were due in, there was a phone call to say: 'There are no beds. You can't come in'."

To get through it, Emma wrote a kind of log. And she has now turned that into a novel. "The surgery in the novel is pretty much what happened to me," says Emma. "But 'Emily' is not me, and the husband is not my husband Cian."

It finishes with what Emily thought of the surgery -- and feeling well again. That, for Emma, was just the beginning of the story.

"In September, Tallaght Hospital called me to say they had found DCIS pre-cancer cells in the analysed tissue they had removed," recalls Emma. "I felt that news to be a kind of justification to the people who were surprised that I was hell-bent on surgery. I wasn't worried. They said with all the breast tissue now gone I was safe. After a bilateral mastectomy, you have just a 4pc chance of getting breast cancer.

"But in January 2007, I developed a rash all over my upper body. My legs and arms swelled right up. I felt unwell and could barely move. It was an auto-immune disease called Dermatomytositis."

Emma went into the Blackrock Clinic for tests. And she mentioned a couple of lumps she had found on her neck and under her arm. A week later, doctors told her that she had breast cancer. The two conditions, they explained, could sometimes break out in conjunction.

"I had six months of chemotherapy," says Emma. "And I also had to take a load of steroids to treat the auto-immune disease. I kept getting infections because my auto-immunity was shot. And the chemo didn't finish until November 2007. I was in hospital for eight weeks at the beginning, and was in and out after that."

Emma recounts all this without an ounce of self-pity.

"I never felt 'why me' or 'poor me'. Millions of people get cancer, so why shouldn't I? I am just grateful that it is me who is ill, and not my kids. That is what has got me through."

Emma is beautiful. Wasn't it terrible losing her hair, her eyebrows and lashes?

"Losing it was not as bad as I'd thought. I didn't like myself bald. I felt it was a neon sign, and I didn't want everyone feeling sorry for me. So I wore wigs, put on make-up, and sometimes stuck on eyelashes. Then, you can feel bloody awful, but people say 'Hi' and you don't feel you are flailing."

In January, 2008, Emma found a lump under her arm. The cancer was back. "They removed it," says Emma. "And then I had more chemo. That went on until December last year. Now my scans are clear."

How did she get through all of that while at the same time caring for her children Sasha (11) and Kim (9)?

"We built a house in my parent's garden, and they are young, willing and able," says Emma. "We have a girl living in, so we are lucky. And I have learned how good people are.

"People dropped dinners in. They had the children to play. They'd call my husband and parents and say, 'Are you doing OK?' And they came to see me in hospital and brought amazing gifts. People were amazing."

Kim has a 50pc chance of having the cancer gene. Surely this is a worry?

"I feel, by then, they will have found a solution," says Emma. "They only identified the gene 12 years ago and they are getting closer, all the time, to finding a cure. Kim cannot get tested until she is 18, and then it is up to her. There are members of my family who have not been tested. They simply don't want to know.

"I would not change anything," says Emma. "I don't regret knowing I have the gene and I don't regret the surgery.

'Cancer does not have to be a life sentence. I have beaten it twice. And I am now on a prevention drug; it's given every three weeks by IV (intravenously)."

The best thing to come of it all, Emma says, is her writing.

"Writing got me through. The worst thing about chemotherapy is the time you have to spend in a chair. It's like a long-haul flight.

"I've written three books now, and I'm on my fourth. I love it. I have to set an alarm on my phone so that I remember to pick up the children. I go completely into the world of what I am writing. It is so much fun."

Her first book, though, carries a message. "There is a lot of scaremongering around cancer, especially among young women. I want to give a positive slant. I hope it gives hope. I am still here and I have no intention of going anywhere."

Designer Genes by Emma Hannigan, Poolbeg, €11.69.

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