Kat Lister of The Pool Health interviewed Flat Friends founder Gilly Cant at the end of last year. In this eloquent article, Kat has captured the words and spirit of Gilly, Liz Powell, and one of our patrons Ash Subramanian with integrity and honesty. Read on…

Why some women choose to “live flat” after breast cancer

Breast reconstruction isn’t the only way to come to terms with the trauma and pain of cancer. Kat Lister meets the women who are living flat

When Gilly Cant was diagnosed with breast cancer in 2013, she never dreamed she’d turn down reconstructive breast surgery. However, after undergoing a single mastectomy and chemotherapy at the age of 43, something changed. Her body had been through enough. She wanted to notice any returning lumps, but ultimately, she wanted to regain control. In order to do so, she decided to have her other breast removed, too.

Cant is just one of an increasing number of women who are declining reconstruction in favour of “living flat”. Self-determination isn’t always easy, though – especially if you’re redefining your womanhood. “It’s really difficult to go against what’s expected,” Cant explains. “It’s seen as such a stigma not to have your breasts.”

I’m ashamed to admit that up until I chatted with Cant about her decision, I knew very little about these women and their struggle to be heard. I hadn’t fully considered the physical and emotional challenges entwined with reconstruction; and I definitely hadn’t questioned our traditional assumptions about femininity in relation to it. There is relatively little discussion around the subject and when it comes to “living flat”, the narrative is hard to find. As a consequence, women like Gilly Cant feel like they’ve had to fight under the radar, wrestling for their bodily autonomy alone.

“I searched for help on this everywhere,” Cant says. “I absolutely trawled the internet. There was no support.” Which is why she decided to take matters into her own hands, founding a support network called Flat Friends in 2014. She proudly tells me it became a registered charity this year, and throughout 2017 their leaflets will be winging their way to every breast unit in the country. A massive achievement? Yes, but there is still a lot more work to be done.

According to Breast Cancer Care, breast cancer is the most common cancer in the UK, affecting one in eight women during their lifetime, and as the National Mastectomy and Breast Reconstruction Audit (NMBRA) states, approximately 40 per cent of women diagnosed require a mastectomy. It’s also worth noting that the percentage of women who chose immediate breast reconstruction at the same time as a mastectomy increased from 11 per cent in 2005-6 to 21 per cent in 2008-9.

The general percentage of breast reconstructions may be rising, but that doesn’t mean there aren’t plenty of women out there who wish to stay flat after cancer. Cant tells me that there are 600 women signed up to the Flat Friends closed chat group on Facebook, and approximately two women seek them out via their website every day.

“Reconstruction doesn’t suit everyone and each individual has different goals,” says Ash Subramanian, a consultant oncoplastic breast surgeon and director of communications at the Association of Breast Surgery (ABS). “It’s often complex and may not always meet a woman’s expectations.” Despite this, Cant tells me that the decision to resist breast reconstruction in the UK can sometimes be challenging for women in the doctor’s room. “It’s really difficult to go against what’s expected,” Cant says, “because reconstruction is given as part of the breast cancer pathway.”

This isn’t about one decision being better than the other – every woman is different. It’s about giving women the time and space to pick the right path, for the right reasons

Cant isn’t alone. “When we talk about breast reconstruction we rarely talk about the complications that can occur,” Liz Powell tells me. Powell was diagnosed with breast cancer in November 2014 and her treatment plan was surgery, six doses of chemo and radiotherapy. There was a small hope the chemo would shrink the tumour enough to avoid a full mastectomy, she tells me. But this didn’t happen. In May 2015, she had a full mastectomy with an immediate DIEP flap reconstruction (a new breast shape that can be created using a flap of skin, fat and sometimes muscle.)

Powell tells me that although all went well at the time of reconstruction, subsequent radiotherapy damaged the blood supply to the reconstruction and caused fat necrosis – a condition that occurs when an area of the fatty breast tissue is damaged. “Much of the reconstruction felt like concrete rather than flesh,” she explains. “It was very painful most of the time.” Looking back, she now regrets her reconstruction, and is vocal about the pressure she felt to make the right decision, quickly.

“I feel that the priority for my doctors was getting me well and getting me looking like ‘normal’ by the end of it,” she says. “They have achieved this from an outside perspective but my body is far from normal to me. I have a huge scar across my tummy and a slightly lumpy hunk of flesh on my chest that does not fit into regular bras. It causes me a lot of discomfort.”

Although the extent of Powell’s necrosis is rare, her experience highlights just how complicated – and potentially traumatic – breast cancer recovery can be in the long term.

Listening to both Powell and Cant, the prevalent issues seem to be patient choice and ending the stigma. This isn’t about one decision being better than the other – every woman is different. It’s about giving women the time and space to pick the right path, for the right reasons. It’s also about reframing “living flat” as a positive lifestyle choice for those who choose it, and challenging the status-quo when it comes to defining womanhood. Breasts are so inextricably linked with femininity and beauty; I wonder whether this feeds into a woman’s feelings of “abnormality” if she decides to reject reconstruction?

“Spot on,” Cant replies. “I think that’s what women feel: they don’t feel feminine anymore. But for me, my top half was a size 18 and my bottom half was a 12. Now I’m even. I can buy a dress now – I could never wear a dress before. I lived my life in black trying to squash my chest. As stupid as this sounds, now I feel more feminine without my breasts.”

Powell agrees. “Ironically, I am an academic and one of my areas of research is media representations of women with breast cancer,” she tells me. And yet, despite analysing our traditional ideas of femininity and beauty, Powell says she was still “sucked into the same narrative” when she was diagnosed.

“The reality is that, for me, my reconstruction is not a breast and while I doubt anyone would know to look at me, I know, and I am aware of it all the time,” she says. Women like Powell may be in the minority, but that doesn’t mean that their voices – and experiences – shouldn’t be heard.

Again, it comes back to choice. “Yes, I chose not to have breast reconstruction,” Cant tells me, proudly. “And I will shout it from the rooftops at any given opportunity. Because if I can be brave and shout it, maybe I can change things a tiny bit. It’s about making the journey for those coming behind me that little bit easier.”