Self-Advocacy Lessons From An Autistic Breast Cancer Survivor

Or: Trying to Appear Typical—to Foob or not to Foob

Foob (N): Term popularized by breast cancer survivors to mean any false or fake boob. Some definitions assume they are temporary pending reconstruction. To foob can be a verb, as in to dress wearing foobs. Flatties like me have a variety of choices, both weighted and unweighted. No more sweaty silicone!

On May 27, 2022 I found out my breast cancer was back.  Learning to advocate for myself, after learning late in life I was autistic, has given me the strength, self-awareness, and tools to stand up for myself after I was suddenly deposited back on the breast cancer treadmill. Here is what I’ve learned: Once I’ve done my research and have decided what I need, believe me. Society (and doctors) will try to force us to go with the flow—don’t give in to that pressure. Know yourself and assess the personal cost in every situation.

What was supposed to be my all-clear five-year mammogram was initially postponed due to the COVID-19 healthcare backlog. After finally getting two spring mammograms and a resulting biopsy, and after those resulted in the bad news, my breast surgeon offered a single mastectomy. But I chose to be done with my breasts, which I frankly never wanted. I had a double mastectomy on July 4th.

Because breast reconstruction is now a valid option (at least in more prosperous nations), surgeons push us to maintain our ‘womanliness’, sometimes via immediate implant, or by the insertion of spacers to expand the skin for later surgery. The life-preserving operation can happen too soon to weigh alternatives to the ‘figure-conserving’ new norm; I was, and we are, expected to make decisions quickly. Yet many revisions can be an unforeseen part of reconstruction. Sometimes implants are removed as they fail or disappoint—this is called an explant.

‘Going flat’ immediately, as I did, is rarely offered as a choice; I found that the breast cancer patient has to mention this. The term Aesthetic Flat Closure (AFC, now found in the U.S. NCI guideline) must specifically and repeatedly be stated. Yet satisfaction at living flat is later found to be high.

The plastic surgeon I consulted in June 2022 had a completely different meaning of ‘aesthetic.’ He kindly offered to artistically rebuild my breasts, mostly using flaps from my tummy or lower back. More surgeries, more painful scars, more years lost…I politely declined. Even the post-operative camisole provided to me was for a C/D cup because that was my old size. I just let the bra fitter assume I would get reconstructed, rather than argue with her.

Canadian advocate and breast cancer survivor Ellyn Winters put it this way: “I think doctors are a little in love with putting Barbie back together again. And the medical community doesn’t see AFC as being a reconstruction. And so, I think we need to start thinking about going flat, and the form of flat that I have, as being a completely valid viable reconstruction option.” She also said, “I’m  not encouraging anybody to go flat, necessarily. That’s my decision. But…you shouldn’t be ashamed.”

There is now more help for women who choose to live flat,  as 25% of American women are opting to do. We need to be given all the facts. but the choice is not always made available, and you have to do your own research. I got courage and support from Flat Friends UK, Not Putting on a Shirt, Flat Closure Now, and my spectrum sister Nicki H.

You could compare my choice to go flat to that of a neurodivergent person who resists pressure to fit in, and resists adult social skills training (what I’ve come to call “ABA therapy in the Wild”). There are additional parallels:

Decades ago, breast cancer patients had few choices to save their lives. They were left gouged, misshapen, lopsided. But now we’ve gone to the other extreme—just because we can be reconstructed, should we? For me, the freedom to choose AFC and get it (which is not a given, witness many cases of ‘flat denial’ where patients wake up with an undesired outcome), is akin to asking for accommodations from the workplace so I can thrive autistically. We want to be given all options and make the best decision FOR OURSELVES.

Must we pad ourselves out or get surgical breast enhancement? I say no.  As Jessica Chastain spoke out on Instagram, boosting Florence Pugh’s message, after Pugh was criticized for unapologetically wearing a see-through dress with no bra: “Why is it so threatening for some men to realize that women can love our bodies without your permission? We don’t belong to you.”

A similar situation happened to me again recently: a male medical student examined my healed mastectomy scar before my surgeon arrived (I was not asked if the student could attend.) Again, the student asked why I wasn’t getting rebuilt, as he mistakenly assumed that was the reason for my visit.

We know that most of the lingerie and indeed fashion designers are male (even the Muse mastectomy bra line designed in Canada, although it had survivor input.) Is padding out my newly-flat chest just another example of having to cater to the ‘male gaze’? Is this my new form of camouflage, in order to conform to a societal norm?

So many companies, who profit from us at this vulnerable time, pressure people undergoing major lumpectomies, single or double mastectomies, to maintain the appeal of a busty profile or ‘pleasing contour.’ Pleasing to whom? I refuse to exist for the male gaze. Anna H, an expert from the Facebook group Flatties who Foob often models her fashion finds three ways: all flat; padded out; or even one side flat, one side foobed. It is a whole new lifestyle.

Both the cancer diagnosis and autistic identification are situations that affect Quality of Life. Their outcomes are unclear unless all the facts are put on the table. Knowledge is truly Power.

I hope you never have to go through the turmoil I did, especially more than once, but today there is help if you know where to look. Some who paved the way for me: The late Donna Williams/Polly Samuel, and my very much alive autistic friends Nicki H, Ann M., Julie R, Suzanne W.; in the general community, Janet L and Nancy T of Knitted Knockers of Canada, and Andrea D of Breast Cancer Action. Cancer made us traveling companions, members of a club we never wished to join. I encourage all readers who have to face this to raise your voice, or pen, against the stereotypes both of adult autism and society’s image of breasts.

Dedicated to the late Erika Karrei: “I went through cancer solo, but I didn’t go through it alone.” RIP 1962-2022

I wrote this article as a sequel to my 2016 article Affliction or Condition on my earlier lumpectomy. Note that my language has since evolved.

Reference:

Lee CN, Pignone MP, Deal AM, et al. Accuracy of Predictions of Patients With Breast Cancer of Future Well-being After Immediate Breast Reconstruction*. JAMA Surg. 2018;153(4):e176112.doi:10.1001/jamasurg.2017.6112 and other papers by Lee et al.  [*compared with No Reconstruction.]