why aren't we supporting women who opt out of breast reconstruction?

maybe that’s why in the past 50 years there’s been such an emphasis on reconstructive surgery to rebuild (or build anew) the breast that’s taken. it’s common wisdom among many that a woman will want to reconstruct her breast to feel more like her old self. the right to breast reconstruction has long been understood as an issue of freedom, bodily autonomy and choice. in canada, breast reconstruction is funded as a part of our national health system because although it’s an aesthetic procedure, it has a positive impact on some patients’ mental health. when u.s. insurers denied claims for reconstructive surgery, women’s health advocates went to court; in 1998, congress passed the  women’s health and cancer rights act  requiring health insurers who cover breast cancer treatments to also cover the costs of breast reconstruction.

saying no to reconstruction stratifies partly by age, with older women less likely than younger women to have reconstructions or other interventions. in the u.s. today, 50 per cent of single-mastectomy patients opt out of reconstruction and 25 per cent of double-mastectomy patients opt out,  according to a study  published in the  journal of clinical oncology.

for women who decline reconstruction, there is no added surgery or recovery time. with reconstruction, each surgery has its own protocols. according to the  university health network , the average latissimus dorsi flap with expander surgery protocols takes two surgeries and six weeks’ recovery time. the process for saline implants commonly involves two, two-hour surgeries; diep flap surgery takes 6-10 hours with a four-day hospital stay and an 8-12 week recovery period. with some of the reconstructive procedures, a spacer is placed to stretch existing breast tissue between surgeries.

google “going flat” and you’ll find instagram selfies of lush,  tattooed  flat closures and coverage of fashion shows featuring women who chose to go flat, with an emphasis on body positivity. through “flat and fabulous” blogs and social media groups, women share photos of the beautiful, flat-style dresses they’ve found for their weddings – and of date nights, smiling with their partners, no prostheses required. judging from the community that’s been growing over time, going flat has been a positive choice for many women.

w hen abigail bakan, a political science professor at the university of toronto, had a bilateral mastectomy in 2016, she decided from the start she didn’t want reconstruction. “i said no. and they had it on my record,” she told me. but members of her cancer care team asked her, repeatedly, if she was sure. “that’s when i started thinking, ‘why are they are continually asking the question and there’s only one right answer?’ the ‘right’ answer is you’re supposed to say yes.”

a social worker on bakan’s cancer team recommended that she attend the breast reconstruction awareness day event in toronto, known as bra day. bra days are held at various venues across north america, including community centres, convention centres and hospitals. “bra day brings together women currently facing breast cancer with leading breast reconstruction surgeons,” reads the  press release  from toronto’s event. it features seminars for patients about different reconstruction techniques as well as a show and tell lounge where breast-reconstruction patients tell their stories (and show results) to women who’ve been referred to the event by their physicians.

the logo for  bra day  features a pink cancer ribbon with a symmetrical pair of loops resembling breasts and the tagline “closing the loop on breast cancer.” the logo reflects the idea that constructing a new breast can be a liberating alternative to wearing a prosthesis or facing potential social stigma around appearing without a prosthesis.

this seems to be the spirit behind plastic surgeon and canadian bra day co-founder  mitchell brown ’s comment in 2017 that “if a woman has had to have one breast removed, there is awkwardness and difficulty in trying to create balance when they get dressed every day.”

as  toni zhong , a toronto-based plastic surgeon and conference organizer, put it: “we now know that you don’t have to live with a mastectomy defect for the rest of your life and there are options available that can restore your breast to make you feel and look good or certainly better.”

the women in the flat and fabulous movement are pushing back against the idea that they’re not whole without their breasts, blending online organizing around breast cancer care with  image galleries  that bring greater visibility to women who have chosen flat closure. one organization,  not putting on a shirt , uses social media to provide vetted information on topics such as body image, communicating with providers, emotional health and local community supports.

in this sense, the flat and fabulous movement has done more than introduce a new aesthetic option. it’s pushed for better  shared decision-making  and choice (two concepts that are key in the reproductive rights movement) in breast cancer care.

this shift is needed. across flat and fabulous  platforms , women are telling their stories of recovery from botched surgeries or of “ explanting ” implants for various  reasons , including serious  health issues .

yet many say that they were not made aware of risks, statements that are borne out in research. a cross-sectional  survey  in the u.s. in 2017 found that just 43.3 per cent of breast cancer patients had made a “high-quality decision (about reconstruction), defined as having knowledge of at least half of the important facts and undergoing treatment concordant with one’s personal preferences.” many hospital websites and most of the major american clinical breast-reconstruction decision aids do not include the option of flat closure (a notable exception being the breast advocate app, developed by plastic surgeon minas chrysopoulo).

a 2017  study  confirmed earlier research that patients are more likely to express decision regret when they have not been engaged in shared decision-making around post-mastectomy decisions, with this being true both for women who wanted reconstruction and those who wanted a flat closure. “patients often felt pressure from their clinicians to choose one option or another,” according to the study, with some feeling that bias was at play and others feeling rushed to decide on the spot. 

it may seem odd that some women must press their surgeons to get a flat closure, but it happens. a  study  of 931 women in 2021 by ucla’s jonsson comprehensive cancer center found that 18 per cent of recent mastectomy patients had been told there were no options for them to choose to go flat. in five per cent of cases, women were given surgical results that they didn’t ask for, with the surgeons leaving additional tissue instead of a flat closure; what the researchers called “intentional flat denial.”

according to  deanna attai , a california-based breast surgeon who co-authored the study: “some patients were told that excess skin was intentionally left – despite a preoperative agreement to perform a flat chest wall closure – for use in future reconstruction, in case the patient changed her mind.” attai notes, “we were surprised that some women had to struggle to receive the procedure that they desired.”

to date, much of the surgical training has been focused on restoration of what’s been lost, notes bowles. so, when some surgeons are told by patients  not to reconstruct a breast, they may hesitate. “it’s hard for some to accept,” she told me. “it feels wrong.”

echoing this sentiment, susan love, author of a best-selling book about breast health,  told  the  new york times  this year, “surgeons became so proud of what we were able to do that we may have forgotten that not everybody may want it.”

there is also the problem of a data gap, with little information collected on how satisfied women are when they choose to go flat. recent data is interesting, however. a 2019 systematic  review of 28 studies  found that women who went without reconstruction fared no worse and sometimes better than those with reconstructed breasts, with no notable differences in terms of “quality of life, body image and sexuality.” some of this was confirmed by  results  of  the 2021 ucla study that attai co-authored, which showed that 75 to 90 per cent of women who underwent mastectomy without reconstruction were satisfied.

t he history of breast cancer surgery is a grim chronicle of trial, error and slow progress. lumpectomies have been performed since at least the 14th century. rudimentary mastectomies are documented in the 19th century, including the mastectomy of abigail “nabby” adams, the daughter of u.s. president john adams, who underwent an early mastectomy while tied to a chair in her parents’ home with no anaesthetic or antiseptic.

in the early 1930s, the modified radical mastectomy was developed, sparing some women pain by retaining muscle in the chest. then, with advances in radiation and chemotherapy, research showed that some classes of patients who were treated with a  lumpectomy  (removal of tumour with an extra margin of tissue) and radiation had similar survival rates to women treated with only a mastectomy. as a result, in the late 1980s, the  concept  of breast-conserving surgery became more popular.

although surgeons in the first half of the 20th century experimented with reconstructions that used the woman’s own tissue (autologous reconstructions), it wasn’t until 1963 with the  development  of silicone breast implants that reconstruction surged in popularity. but these implants also created health risks and led to numerous recalls, explants and  class action lawsuits .

they still carry  risks and complications . most recently, textured breast implants, which were used in thousands of procedures, were pulled off the market by health canada in 2019 because of a rare risk of lymphoma. amazingly, some women have struggled to get provincial  health coverage  to have them removed. women in the u.s. are similarly battling with  insurers  for coverage to have various types of breast implants removed.

in 1979,  the first  modern autologous breast reconstruction was performed, opening a door to alternatives for women choosing reconstruction. these procedures continue to carry risks, however, including limited mobility in sport as well as mastectomy skin flap necrosis (tissue death) that can cause scarring, deformity and lead to more interventions. a 2018  study  of 2,300 canadian and american women who had breast reconstruction between 2012 and 2015 found that women with autologous reconstruction experienced  higher rates  of complications than women with implants.

in her book  the cancer journals , black feminist writer audre lorde fought for body acceptance after her breast cancer surgery in the late 1970s, rejecting the admonishment of her surgeon’s office to wear a prosthesis. “there is nothing wrong with the use of prosthesis if they can be chosen freely,” she wrote, but “after surgery i did not feel better with a lambswool puff stuck in the front of my bra. the real truth is that certain other people feel better with that lump stuck in my bra.”

it seems amazing that more than 30 years later, we are dealing with some of the same tensions. when comedian tig notaro, who went flat after a double mastectomy, ripped off her shirt in the middle of 2012 stand-up shows in new york and l.a., she shocked the audience. she also fostered a sense of hope and solidarity among breast cancer patients. notaro exposed the realities of living with breast cancer while also making it clear that the shape of our chests doesn’t – and shouldn’t – define us. “she showed the audience her scars and then, through the force of her showmanship, made you forget that they were there,” critic jason zinoman wrote in  the new york times .

some of the loudest voices for a new approach have come from women who experienced flat denial. in quebec,  marie-claude belzile  wrote in 2017 that her experience inspired her to make change to health care in her community: “i had to fight with my breast surgeon to be flat. even after i told him multiple times i wanted to go flat, he wrote on my surgery form ‘reconstruction, expanders.’ he finally respected my choice and did a good job, but the fight i had to go through should have never happened.” belzile, who passed away in 2020 from metastatic disease, started a facebook page called  tout aussi femme  after being diagnosed with stage iv breast cancer. she also  founded  a french-speaking flat support group called  les platines .

“many women (opt out) for comfort, others are athletes and many women … want it to stay simple. reconstruction is not a simple process,”  says attai , adding that in the past few years more of her patients, especially those with smaller breasts, are opting out of reconstruction.

women who use their back muscles for work or athletics may be wary of latissimus dorsi flap surgery (which i was offered) because there is a risk it can compromise shoulder function. this and other procedures carry risks including infection and necrosis. complications may lead to further interventions.  in the u.s. , one in three women develop a postoperative complication from breast-reconstruction surgery within two years and one in five require additional surgery. in 5 per cent of cases, reconstruction fails.

according to the  journal of the american medical association , a  study  of 2,343 patients found that 32.9 per cent experienced postoperative infections or other complications from reconstructive surgery. a 2017  study  of 1,632 women who’d had reconstructive surgeries outlined musculoskeletal and nerve issues in patients at the one-year mark.

while a patient can give informed consent when knowing the risks, too often breast cancer patients have not been made aware of those risks. the  ucla study  found that just 14 per cent of patients were aware of potential complications of reconstruction – but 57 per cent reported that they had been informed of the potential benefits to reconstruction procedures. the team concluded that: “implementation of uniform surgical management and improved respect for patient consent in this population would result in significantly improved patient experiences.”

i had a look at the american college of obstetricians and gynecologists’ committee on ethics , which shows a thoughtful perspective toward the concept of shared decision-making: “a signed consent document does not guarantee that the patient’s values and priorities have been taken into consideration in a meaningful way and that the ethical requirements of informed consent have been met. meeting the ethical obligations of informed consent requires that an obstetrician-gynecologist gives the patient adequate, accurate and understandable information and requires that the patient has the ability to understand and reason through this information and is free to ask questions and to make an intentional and voluntary choice, which may include refusal of care or treatment.”

“if you give them enough time and enough information, they’re more likely to be happy five years afterward and they’ll feel like they made the right decision. those people who are not satisfied often felt rushed or pushed,” he says. “i think  time  is probably one of the most important aspects of shared decision-making for breast cancer.”

in canada, our underfunded systems lead to a different kind of rush. in seeking to care for everyone but with limited resources, our clinics lack capacity. time often seems like a luxury – but with reconstructive surgery, waiting can actually help mitigate risk. a 2018  study  found that patients who delayed reconstruction were significantly  less likely  to develop complications than those who chose to do their reconstruction immediately.

as it turns out, everybody in cancer care needs more time. a 2020  assessment of burnout among ontario oncologists noted several factors, including “poor/marginal control over workload, working atmosphere that feels hectic/chaotic and insufficient time for documentation requirements.”

t hroughout breast cancer treatments, our relationship with our bodies changes. during chemo our hair falls out, our weight fluctuates, bizarre things happen to our fingernails and skin. we get sick and sometimes can’t stay awake. the radiation burns us; those put into chemical menopause are doused in hot flashes. pain and discomfort are part of the whole deal. and while there are some small decisions we have control over during treatment, most of us simply take the treatment plan handed to us if we want the best chance to get well. the choice of whether to reconstruct or go flat is different. this decision isn’t about fighting cancer; it’s about healing from the fight.

bowles thinks so, noting the oncoplastic breast consortium’s recent amendment to include optimal flat closure in its mission statement. the canadian cancer society also now lists “choosing to stay flat” on its website. bowles cites practitioner education initiatives as well as a growing discussion in the u.s. insurance industry. as she points out, plastic surgery is a competitive environment, too. not putting on a shirt now has more than 200 surgeons globally listed on its  flat friendly surgeon directory  (three are canadian).

b ack in the waiting room, my mind travels to my visit a year ago, waiting to go down the hall for surgery. x-rays of my tumours would be taken in surgery that day and sent to me later via a secure hospital server. i opened the images late one night and was struck by their appearance, like variegated blossoms in white and black — excised and sampled for cells to see if they got it all. they tried to get it all. we tried, all summer, fall and winter. did we?  i wonder:  did we get it all?