Breast cancer and reconstruction: ‘Have you got your nipples back?’

Five women, all unknown to each other, take to a stage near the Mater hospital in Dublin on a Wednesday night. Each of them has had at least one breast removed because of cancer and a few are wearing dressing gowns to display the results of reconstructive surgery.

A crowd of 100 or so women is sitting before them. Many of them have had mastectomies, some are just about to and this can be seen on their faces, many of which are pinched with concern.

The women begin to ask questions, tentatively at first, then the pace picks up. Recalling how her reconstruction surgery failed, one woman says she could not have coped without the help of her doctors.

“Have you all got your nipples back?” a woman in the audience cautiously asks one of the panel. “No,” one of them replies. “I’ve got one,” says another. “I have two.”

The audience laughs.

Faced with a cancer diagnosis, there’s no shortage of things to worry about. The treatment, losing your hair, understanding the road that must be travelled and ensuring loved ones understand what’s ahead.

Too often, however, life after treatment, including the possibility of breast reconstruction, is overlooked. In fact, only about one in five Irish women affected by breast cancer explore the options. Fewer opt for it. The lack of knowledge can often be as overwhelming as the prospect of surgery.

In the basement of the Catherine McCauley Centre near the Mater hospital those questions were dealt with head on.

Organised by the Mater Foundation to coincide with international Breast Reconstruction Awareness Day (Bra Day), the event offered women an informal guide to the surgery, combined with pathos, levity, and tears.

"There's a failure of communication on every level between everybody. And that's why there's an awareness [event] today, because it is so low," consultant plastic surgeon Richard Hanson says.

He, along with his Mater colleague Robert Caulfield, believe women should know the reconstruction options available in Irish hospitals. "Some people just don't want them but some people don't know about them," Hanson says. "There are a few different attitudes but one is that women might feel selfish to want a reconstruction after the cancer being cured. Or a fear that they don't know what the options are."

Ireland’s figures are not unusual. In the US, just a third of women have reconstruction surgery. “Is it a failure of the patient not to look for it, is it a failure of the doctor not to offer it, or is it just a question of there is no resources to deliver it?” Hanson asks.

The options are twofold. Firstly, women can opt for Diep-flap procedure (deep inferior epigastric perforator), where tissue from one part of the body is moved to shape a replacement breast. Secondly, women can choose implants.

Reconstruction is never easy, particularly for a woman who has already endured months of treatment, usually followed by surgery. The reasons given for choosing the route vary.

“I have a long life and I want to live it whole,” says one woman. Another tells a story of doing a day’s gardening during which her external prosthesis fell to the ground. Soon, she was in tears, before placing the prosthesis carefully in her bag.

Hanson advocates for the “transformative” possibilities offered by the surgery, one supported by the volunteers brought together to tell their stories.

Earlier this year, Oonagh Horgan (40), a mother of three from Dublin, hoped a lumpectomy would be enough to deal with the precancerous cells found in her right breast.

In August, she was told a mastectomy was required. Devastated, Horgan was told on the same day of her options for reconstruction: something that has rarely been the case for women who have faced a similar trial earlier.

Suitably informed, she chose the Diep flap as she felt it would appear more natural and was comforted by the idea of her own flesh being used – which meant the mastectomy was followed by reconstruction during 12 hours of surgery.

The choice is not without consequences: “You are out of action for definitely four to six weeks. I mean you are not driving, you are not able to walk. It’s a slow recovery. So that all had to be considered,” she remembers. Support from friends and family becomes vital, Horgan says. “My children have never been on so many play dates. But it’s amazing, people were just great. I had anonymous dinners left at my front door and everything.”

The surgery’s benefits are significant, but there are risks, too, she says. “When it doesn’t work it leaves its mark. It’s nobody’s fault. It’s not that I go around blaming people. Why not me? But it’s tough,” says one woman from the floor.

Urging the women “not to give up”, another interjects, recalling that her mother’s reconstructed breast had to be removed. Her mother was devastated. The trauma followed her for the rest of her life.

The emotional cost left by breast cancer can be overwhelming, explains Hanson. Studies have demonstrated the impact on perceptions of femininity and sexuality as well as intimacy.

“But even if it goes well [the psychological impact] is massive. People will be elated for the first few days and then can go into depression,” he says. “It’s a massive surgery, it’s a huge undertaking. They can have a fear of breast surgery anyway because they have had breast cancer.”

In the Mater hospital, dedicated breast-care nurses visit patients on the ward and follow up afterwards. “Education is it. If you are going down a dark alley and you don’t know what’s around the corner you are going to be scared,” Hanson continues. “But if you go down the dark alley and you have read the map and there’s light at the end and you know where to go it’s easy.” Post-operation research, for example, shows that sexual relations benefit from reconstruction.

Each woman’s experience is different. One of the five women on stage left hospital after five days, took strong prescription medication for a week and then just paracetamol. For many, there is a rush to embrace this return to life.

“Once you focus on this, the cancer is gone. It’s a new you. You are back to normal,” says one woman. “Yes,” the woman beside her says, seizing on the word: “Normal is a good word.”