What’s missing from breast cancer awareness

In case you missed it, October is Breast Cancer Awareness Month (BCAM)—an annual international health campaign with the aim of raising awareness about the impact of breast cancer and raising funds for breast cancer research and advocacy. While this month usually passes me by without a second thought, this year is different. In December 2021, I became one of the 20,000 Australians diagnosed with breast cancer each year. This year, amid my treatment, BCAM—with its ubiquitous pink branding—did not go unnoticed.

BCAM posts by peak breast cancer organisations are generally pitched at the level of individual responsibility and awareness, encouraging better understanding of different aspects of breast cancer—including treatment, financial costs, and psychological impacts—and fundraising for research. As I scroll social media posts, I remain unsure who these are for. Are they for the public who might not be aware of breast cancer and the need for funding? How many of those people can there be? Or are these aimed at people who had—or have—breast cancer, to make us aware of different aspects of treatment and care, or new research? Perhaps it’s both.

You’d think that having the personal experience of breast cancer, I would feel represented by at least some breast cancer awareness content—yet the more I looked, the more alienated I felt, for two reasons: I felt the message about awareness is misdirected, and I did not see a crucial reality of breast cancer represented in any promotional content.

I was diagnosed with breast cancer while I was pregnant. In the months prior to my diagnosis, I complained to midwifes, nurses, and lactation consultants about a lump and pain in my right breast. Being pregnant during Sydney’s Delta-Covid lockdown meant most of my prenatal appointments were telehealth, and despite my persistent symptoms not one healthcare worker suggested I might come in for a physical examination or get an ultrasound.

I don’t hold any of these healthcare workers responsible, but I feel that my symptoms and concerns were not taken seriously. Since speaking about my experience publicly, I’ve heard countless stories of young women saying the same thing: no one believed me, no one took me seriously, and so my diagnosis was delayed.

Too many healthcare workers dismiss young people (< 40) presenting with lumps & pains as being too young for breast cancer, or in my case, told that its only pregnancy hormones changing my breasts. What is the point of reminders to self-check my breasts every month when healthcare workers don’t take young people’s concerns seriously? Why are we encouraged to buy pink cupcakes if, when it comes down to it, too many of us will be told “you’re too young”, and our diagnoses delayed? I’m in full support of increasing awareness of breast cancer, yet feel there’s a dissonance between individuals being told to self-examine and check for symptoms, and the nonchalant-ness with which some healthcare workers meet young peoples’ symptoms and concerns.

The second reason I felt alienated by BCAM posts is because every post I saw exhibited women, often smiling, wearing make-up, looking generally happy. This struck me as odd—it is certainly not the reality of breast cancer that I know: eyes heavy with fatigue, face round from steroids or sunken from nausea; thinning hair, arm bruised from regular blood tests, a protruding bump on the chest where the portacath is located. Certainly, this reality isn’t appealing. It is heavy, difficult to bear, and confronting. I can understand why fundraising posts might prefer to use more palatable images, even if they wash over the daily reality of breast cancer. Then I noticed that every woman on these posts has two breasts.

I scrolled back months of posts on Australian, New Zealand, and USA-based breast cancer peak bodies. To be clear, I admire the work these organisations do. At various points in my diagnosis, I relied on them for support. And perhaps it is because I think highly of their work that I found it so upsetting when I couldn’t find anything featuring flat women.

A 2021 report from Breast Cancer Network Australia states that approximately 40 per cent of women with breast cancer undergo mastectomies as part of their breast cancer treatment. Some of them go on to have reconstruction, but not all. Looking at breast cancer content, you’d think that people with mastectomies don’t exist.

One afternoon, I stopped at a charity table outside my local supermarket. It was branded pink and was raising funds for a peak breast cancer organisation. While having a chat with the volunteers, I perused the various brochures. Not one featured flat women. Not when talking about breast cancer statistics, not when talking about the vital role of research, not when talking about impact and recovery. When I pointed this out the young woman told me that her grandmother, a breast cancer survivor, complained to her about the same thing. Somehow this made me feel worse: it’s like to each other, we exist, but to ‘representative’ bodies, we’re invisible.

Under the heading Making decisions about breast reconstruction, Cancer Australia write:

Women have reported several benefits of undergoing breast reconstruction, including feeling comfortable and ‘whole’, decreased psychological distress and thinking less about breast cancer.

When I first came across this, the final point gave me pause. I recalled speaking to a friend who’s living with breast cancer about my decision to stay unilaterally flat. She told me how deeply she regretted her implant, and that she’s in the process of getting it removed—once she musters the energy for yet another surgery. She said, ‘carrying around a lump of silicone reminds you every day of the cancer … it’s just not comfortable.’ We talked about other forms of reconstruction, but each comes with its own challenges, such as longer recovery periods (compared to a simple mastectomy), high costs, longer hospital stays, chances of infection, and—depending on your form of reconstruction—abdominal problems, implant rupturing or hardening, blood flow issues, hernia, and cosmetic issues, among others (this Cancer Council resource details reconstructions and their associated drawbacks and benefits).

I read breast cancer sites and resources trying to find information about mastectomies and recovery. Over and over, these sites inform me that reconstruction will ‘make you feel whole’. I start to wonder if this is a chicken and egg scenario: do women really report feeling ‘whole’ after reconstruction, or are we simply told by others that we need two breasts to be ‘whole’, and we internalise this reality?

At the same time, I read Audre Lorde’s Cancer Journal over and over. In it, she rails against a medical system that tries to coerce her into wearing a prosthesis post-mastectomy or plan for reconstruction. One passage stands out. It is where Lorde tells us about going to the surgeon to get her mastectomy stitches removed. ‘I felt good’, she writes. The colour coming back to her face, her hair shiny. ‘I knew I looked fine, with that brave newborn security of a beautiful woman having to come through a very hard time and being very glad to be alive’. Until the nurse pointed out Lorde wasn’t wearing a prosthesis. She is staunch—she doesn’t want a prosthesis, it doesn’t feel right. The nurse insists: ‘we really like you to wear something, at least when you come in. Otherwise, it’s bad for the morale of the office.’ Lorde is indignant. Who are you trying to kid? Everyone in the waiting room has either had surgery, or is waiting to have surgery. Why the urge to ‘sanitise’ their experiences?

I feel the same invisibility and indignance when BCAM posts are empty of flat women. It’s not that we don’t exist, but rather in absence of representation we’re made to feel outliers or ashamed.

So much cancer support is about ‘masking cancer’: how to wear your makeup and etch your eyebrows so that no one can tell that you’re ‘sick’. How to wear your wig so that no one can tell you’ve lost your hair. And, in the case of prostheses, how to hide your mastectomy. I’m so tired of hiding the truth of cancer. Why is the onus on me to look like I ‘don’t have cancer’, in addition to going through cancer treatment?

The day after my surgery, a breast care nurse gave me a list of places to go to for a prosthesis fitting. How I wished for a different conversation. How I wished to be told that I’ve gone through so much, to hear that I’m strong and beautiful regardless of how many breasts I have, to be given a physiotherapy leaflet for post-mastectomy exercise that actually featured a woman with one or no breasts. Instead, the focus was on how I can return to look like I did before ‘this’ all happened.

There is no going back. Cancer has radically changed who I am, physically and mentally. I’m not ready to pretend like nothing happened. I’m not sure I will ever want to. I hoped, this BCAM, to see that peak breast cancer organisations acknowledge and post images with flat women, similar to the 2019 Pink Ribbon Germany Campaign.

Instead, Australian campaigns feature pink underwear sold for BCAM, all with women who—as far as I can tell—aren’t wearing a prosthesis, let alone are flat. Even other ‘pink promotional’ clothing items for BCAM don’t feature flat women. It feels like a major reality of breast cancer is being glossed over.

We’re told that we need surgeries to feel whole, but I’m here to tell you that there’s another way. It took my mastectomy to really feel comfortable in my own body; I was able to let go of conventional notions of what I ‘need’ to be or feel feminine, sexy, or ‘whole’. Recognising that reconstruction is often important to many people, we need to also understand that it isn’t right for others, and it’s not just enough to recognise this—we need to normalise flatness.

As you’re reading this, October is coming to an end. but the risk of breast cancer remains. In the spirit of BCAM:

  • Check your boobs (if you still have them … if you don’t, check your scar area).
  • Donate to breast cancer research and advocacy organisations.
  • Give to breast cancer mutual aid funds.
  • Normalise flatness: If you see a unilateral or bilateral flat woman, don’t ask someone why they aren’t wearing a prosthesis, don’t ask when they plan on getting recon. Simply mind your business.

Image from the BBDO Dusseldorf 2019 German Pink Ribbon Campaign

Na'ama Carlin

Na'ama Carlin is sociologist, writer, and academic. A dual Israeli-Australian citizen, she writes about the Israeli-Palestinian conflict, ethics, identity, and violence. You can follow her on Twitter as @derridalicious

More by Na'ama Carlin ›

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  1. Thank you. I went through treatment for aggressive breast cancer in late 2013 at the age of 38. This included a full mastectomy. I did my research and had a very supportive surgeon. I decided to stay flat. I’ve never regretted it, although it makes buying clothes somewhat complex…

  2. My mother had reconstruction surgery after a double mastectomy in 1988. Somebody thought it was a great idea to give an A-cup woman new C-cup breasts. They went hard. They got in the way. She had them removed about 10 years later and has been very happily flat chested since. She’s not even very flat frankly.

  3. Na’ama, I want to thank you for writing this outstanding piece. I have not had to make the decisions you did but I had breast cancer surgery and radiotherapy last year and have a very close family member in hospital right now undergoing a reconstruction post mastectomy.

    The whole experience is so complex and confusing. Critiquing our culture’s approach to breast cancer is extremely difficult when one feels this is a system full of really good people, as you clearly point out, and one knows that the same system has likely saved one’s life, partly because of the massively successful fundraising undertaken. But I agree with you about the many, many murky (and sometimes downright creepy) aspects of messaging and images, and medical approaches that largely go unquestioned because of the feeling of letting the side down if one does ask those questions. I have referred many other women to your essay because it’s so important to open these conversations and very few others have done so in this intelligent public way. THANK YOU.
    – Charlotte

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