Sophie Ducharme, 53 years old, is sitting alone in her hospital room, still groggy. She just had one of her breasts cut out to save her from cancer, and she hasn’t looked at her scar yet. “A nice woman showed up, she said, in the name of an organization called “Live the way you used to live”. She wanted to know where my bra was. I told her I was there to have one of my breasts removed, so I hadn’t brought any bras. She took out a bra from her purse. It was stuffed with cotton wool. And she brandished it in front of me. She said that once I have a surgeon reconstruct my breast, I would be able to live a normal life again.” Two years later, after considering using plastic surgery to recover her lost breast, Sophie is confident in her decision. Her chest is still asymmetrical, flat on one side, curved on the other. She belongs to a big family, “the Amazons”. Its name was inspired by the mythological tribe of women warriors who cut off one of their breasts to be better at archery.

Most women who go through a mastectomy do not have plastic surgery afterwards. Among the 52,500 women diagnosed with breast cancer in France, about a third get a mastectomy, according to the latest national PMSI data (2011). Among this third, an estimated 78% of women do not have their breasts reconstructed. But still, these women often feel like they go against medical, esthetical and social norms. Because it goes without saying that a woman has two breasts and that any removed breast should be replaced. Some women prefer to hide that part of themselves, some don’t: all have chosen, in their views or in other people’s views, a forbidden path. The incitement towards surgical reconstruction is often experienced as an added violence, and in many cases, it slows down the process of another sort of reconstruction: the acceptance of one’s new body.

Plastic surgery after a mastectomy is considered by the French health system as a right, and part of the standard medical procedure. In most hospitals, doctors are told to offer breast reconstruction at the same time as the mastectomy announcement is made. When patients decide not to have breast reconstruction, doctors write “refusal”, sometimes in big red letters, on their files. Some institutional studies, like one published by the Societal Observatory of Cancer in 2014, list the major “reasons of breast reconstruction refusal”: the patients are said to be reluctant to go through an additional surgery, worried about the cost, poorly informed about the procedure, not very sexually active, or not very concerned about their physical appearance.

 “The word “refusal” itself is very revealing”, according to Dominique Gros, senologist and author of Breast Cancer, Between Reason And Feelings. “It’s almost an ideology: a woman should have two breasts, at any cost. It is legitimate for a woman to ask for reconstruction, but it should be as legitimate for a woman to say she does not need or want one. We shouldn’t ask more questions to the latter.” An information leaflet issued by the National Institute of Cancer, for example, begins by this sentence: “Breast reconstruction is integrated in the medical treatment of breast cancer. Many women employ it after mastectomy.” But for Dr Gros, “reconstruction is a possible treatment of a woman, of her image, of her relationship with her body, but it is absolutely not a treatment of the cancer itself”.

Information about breast reconstruction sometimes puts information about mastectomy in the dark. Some women investigate on the internet. Some go to multiple appointments with different doctors. Some sit alone, struggling with their questions and a feeling of disobedience. They take refuge in discussion groups online, clumsy Google searches: some women even imagine they will live with a hole in their chest, or with a floating nipple. Dr Séverine Alran is a surgeon at the Curie Institute in Paris. In 2012, she launched the Info-Sein group: she gathered 15 nurses and 15 patients to discuss how to inform patients and their relatives better. They worked together for two years and published “Heal your eyes”, an online interactive documentary to explain through true stories the different post-mastectomy reconstruction methods available. Each woman explained her choice, and all had their bodies filmed and photographed. For the first time, the concept of a “non-surgical reconstruction” was invented. But it is still not used much in hospital hallways.

When Annick Parent was told in 2000 that her breast would be removed, she wanted to know what her body would look like after the surgery. “What is it going to be, if it is so unspeakable, if nobody can talk about it or just show it to me?”, she wondered. At that time, she would have liked to see “beautiful images” of women who became Amazons. Some images “made for other women, that bring us back to the world of the living people”. She teamed up with some arty friends to create in 2007 an organization called “Amazons exhibited”. Her goal was to “give visibility and legitimacy to the Amazonian body” through exhibitions, talks, and a website. 

Sophie Ducharme remembers she was very moved by a photograph published on that website. It was of a woman, in her fifties. A bird delicately perched on a tree branch was tattooed on her scar. “I told myself, I can be pretty with only one breast, she recalls. And I found the courage to show the photograph to my kids.” Dr Alran always keeps a book by Pascal Bonnier and Florian Launette in her shared office at the Curie Institute. It features portraits of women who posed a few months after getting a mastectomy. Depending on the patient, Dr Alran shows a different character – she knows them all by name – first, with a shirt on. And if the patient wants to turn the page, she shows her bared-chest, her scar plain to see. Dr Gros has his own tricks too. Sometimes he asks a woman in the waiting room if she would be willing to have another patient see or even touch her chest. But most doctors stick to the regular abstract explanations, or draw a quick sketch of the scar on a sheet of paper.  

Even years after they got a mastectomy, these women can be reminded of their difference, in the most common circumstances. Dany Vieules got surgery sixteen years ago and says she “forgets about her scar 95% of the time.” But she had to make compromises. “I clearly belong to the generation that came of age in the late 60s, and feels very open-minded about one’s body and nudity in general”, she explains. But she had to give up on enjoying naturism and even resigned herself to wearing bras, although she was not used to it: “I hate wearing a bra, but I need something to keep my prosthetic breast tight!” Asymmetrical bras – to be worn without a prosthetic breast – are not currently being sold in France.

Ambre, 47 years old, is a singer. She prefers to use a different name to tell her story. “I feel so far away from the proud Amazon riding bare-chested on a horse, she explains. I know my breast is rotting somewhere in a dump.” She dreams of being able to take her shirt off in the municipal pool lockers, “as if it was not a big deal”. She would like to try clothes on in stores without being afraid the sales assistant may check on her and see her chest. “It’s a sum of little details, she continues. Post-mastectomy lingerie, most of the time, is not very sexy, and you don’t really get to choose. I have been looking for a red bra that I like for a while now…” On top of her secret, she has questions she doesn’t know whom to ask because she thinks they are taboo. It is as if her decision to stay asymmetrical meant she was supposed to give up on her femininity and her sexuality. “Women struggle to ask their doctors intimate questions, Dr Gros comments. I think they are afraid it can be considered inappropriate: we talk about saving their lives, and they want to talk about love and sex? I think doctors should be the ones initiating the dialogue.” Can my partner touch my scar? Will my skin still feel his or her hands on my breast?

Healing one’s own eyes is not always enough to heal other people’s eyes. Dany Vieules remembers that her roommate at the hospital wouldn’t stop crying. Her partner had just left her after she got a mastectomy. Most of the time, blunders actually come from a more distant circle. From friends trying to provide some advice or some comfort: “come on, you shouldn’t stay like that”, “I am sure you will feel better once the plastic surgery is done”, “where are you at with the breast reconstruction?”.

Joëlle Lagorce cannot stand her asymmetrical chest. She prefers to wear a prosthetic breast but it is “against her will, just to avoid throwing the memory of the disease at other people’s faces and make them uncomfortable”. Her doctor keeps mentioning the possibility of a breast reconstruction at every single appointment. But she wants the exact opposite: she would like to have her second breast removed, to be able to go out “breast-free, without shocking anybody”. Her doctor refuses to refer her for a second mastectomy. He keeps saying it is a matter of ethics:“I cannot remove your breast if it’s healthy”, he insists.

According to Dr Gros, doctors and relatives encourage reconstruction out of guilt, and because they genuinely want to put an end to a difficult period: “all of them would like to be able to give back what was stolen”. There is also a “societal, almost sociological” explanation to this tendency: “If you look at the imagery of breasts, the classical sculptures or paintings, magazine covers or even the ads at bus stops, breasts are just about everywhere, and they are always made attractive. It is such a symbolical object, and I find it particularly complex: is it to be used for milk, for sex, for advertisement? It’s actually all at once.”

Amazons would like to belong anew to the world of people in good health without having to be stared at with disgust or even just curiosity. Annick Parent is tired of evoking embarrassment. She is even weary of having people ask her questions with too much care: “We don’t need extra gentleness, she protests. We are not fragile little creatures or amputees…” Cathie M, 55 years old, had been “involved and enraged” for years before she stopped being an Amazon activist. Not because she got tired or felt hopeless, but because her asymmetry became a “non-topic”: “That’s exactly what we should hope, she goes on. With this man I am starting a long love story with, I don’t even need to talk about it.”

Right before she got surgery, Sophie Ducharme wrote a phantasmagorical letter to her breast. She depicted it as “a hot-air-balloon zigzagging in the sky like a burst balloon.” “Why aren’t there ceremonies to honor dead breasts for having bravely served their bodies?”, she wrote. She now feels “at peace with her body”,and she doesn’t miss her breast, “this good little soldier”, any more. 

As for Michèle Aubet, who is 71, she doesn’t wear any prosthetic breast, simply because she feels comfortable that way. When she asked her grand-daughter if it bothered her, she replied, pointing at her other breast: “Why? This thing is useless!” Those words made more sense than what one of her friends told her: that she was being“brave”, and that showing her body the way it was seemed like “something militant” to her. Michèle had a drawing she liked tattooed on her scar. It represents an elf reading a tale, laying on a bed made of arabesques – one of the arabesque is her scar. “My skin is insensitive now, so I’m taking advantage of it”, she laughs, putting on her cardigan again. She dares saying she feels comfortable in her own skin: “A pregnant woman is beautiful with her big belly, probably because she represents maternity, she explains. Sometimes, I feel a bit that way. But I’m not sure what I represent.” Maybe the victory of a woman over cancer. And maybe healing itself.

This story was published in Slate magazine in August 2017. It received the Cancer World Journalism Award in the "Patient and Carer Experience" category in 2018.