Life after cancer - Putting the pieces back together

For many women who survive cancer, their journey is not over, with reconstructive and preventative surgery and genetic testing prolonging their ordeal, writes Norma Costello.

CANCER means decisions. Some involve established, well-travelled pathways while others rely on personal intuition and are sensitive to the different needs of each individual. Most discussions on cancer centre around the decisions people make when diagnosed. Unfortunately, the spotlight tends to steer away from people who have come out the other side — people who are now faced with a whole new range of decisions. For women dealing with the aftermath of breast cancer these decisions concern identity, beauty and survival.

Vicky Janssens, 38, a college lecturer from Cork, says cancer has haunted her since her teens.

“The idea of getting cancer has been in my mind since I was 17 when my mother was diagnosed. In a way, it was sort of a relief when I got my diagnosis, it was like I was expecting it,” she explained.

Vicky’s great-grandmother and grandmother died of breast cancer. Her family history left her with a high chance of a genetic predisposition towards cancer. When she was diagnosed with breast cancer in her mid-thirties she was faced with myriad decisions and what she feels are worrying norms.

“It irritates me when my surgeons keep asking me about reconstructive surgery. I decided years ago, if I ever got cancer, I was not going to have breast reconstruction surgery. It seems so pointless. You’ll always have scars and it’s not a vital surgery. What happens if there are complications? I just don’t feel having breasts define me as a human being. They’re not the be all of my identity and not worth having another invasive surgery.”

Vicky says many people don’t understand her decision.

“Every appointment I go to I’m asked if I am thinking about having breast reconstruction yet. When I asked if most people go for it, my doctor said he would actually recommend it to speed up the psychological recovery. It seems strange to recommend an unnecessary surgery,” she said.

The popularity of breast reconstruction surgery worries Vicky who feels we are starting to view cosmetic surgeries as the norm and pushing women into unnecessary body ideals.

“You can’t recreate your body, especially the body you had before cancer. Your body changes and you have to adapt to that,” says Vicky. “People always give the example of what we would look like in a swimsuit without breasts. But I don’t need breasts to go swimming. I just wonder if you are not strong enough — if you have an inkling of doubt — would you be pushed into it or made feel like a freak? Since when did we standardise the way we should look after illness,” she said.

While for Vicky, having reconstructive surgery was unappealing, Saarah Brophy, 45, from Douglas, Cork never questioned having it.

Saarah, who was diagnosed in January 2013, feels reconstruction allows her to pursue her hobbies and regain confidence.

“Even though breasts might make up a very small percentage of who I am, I can’t imagine not having them. I can’t imagine going swimming, or wearing certain kinds of clothes. I’m not saying I would feel like less of a person if it wasn’t available but the consultants told me how popular it was and I never really considered not getting it done,” she said.

For many women, decisions on post-cancer surgery are not limited to breast reconstruction. After a cancer diagnosis, some women are referred for genetic testing which can be a lengthy process and involve preventive surgeries. Vicky feels she has been waiting too long for vital testing, which will decide whether or not she has her ovaries removed to prevent further cancers.

“I was diagnosed with cancer at the end of March 2013. The first time they started talking about the BRCA gene test was in June so it’s been over 11 months now. I just want to have the test. I’m not nervous about the result either way. I just want to know so I can move forward,” she said.

For this young mum of one, the uncertainty of knowing when she will have access to the BRCA tests seems to be never-ending with dates changing as resources are stretched.

“At first, I was told I would have to wait two years, now they’re saying it’s 18 months. It is just a simple blood test. I just need to know whether or not I have the gene so I can make decisions. It’s an ongoing struggle and one a woman who has just had cancer doesn’t need,” she says.

Vicky who already underwent a double mastectomy, says if she has the BRCA gene she wouldn’t think twice about undergoing further surgery to limit her risk of cancer. She was told the delay was a result of a lack of genetic counsellors, confirmed by the National Cancer Control Programme. Vicky says she does not need counselling and this is creating an unnecessary delay.

“It’s incredibly frustrating. I just want them to give me the facts so I know what I need to do. If they told me today I had the gene I would go straight away and have my ovaries removed. To me it’s a ticking timebomb. I just feel powerless and I want to do something about it.”

Saarah’s mother had the test in Finland.

“My mother had the BRCA2 cancer gene so — given the family history — I already knew I had it. I got the results in December, it was just a confirmation really. I had already decided before the results to get my ovaries removed and a double mastectomy. The testing process wasn’t traumatic for me at all. When you’re diagnosed with cancer you go through such an awful time with the treatment. After that, the preventive surgeries seemed such a small price to pay to stay alive,” she said.

But Saarah feels for younger women decisions about preventive surgeries could be more traumatic as dreams of having a family could be snatched away.

“I have two sons aged 18 and 14 so I think for me, and this might sound strange, the timing was perfect. I was approaching the menopause anyway so removing my ovaries wasn’t such a big deal. Then again, I know if I was 20 years younger the whole process would have been devastating, a whole chunk of my life would have been stolen from me,” she said.