Julie – “It Isn’t Right, But It Is My Reality”

Editor: Julie H. Rose knew that she wanted to go flat from the moment she was diagnosed. And yet, her medical team – including the female surgeon that she had chosen specifically to try to protect herself from paternalism – made her explain her decision over and over again, as though her choice was invalid. Her concern for a good flat result was dismissed, even though she had very large breasts, which makes flat closure more technically challenging. She asked if she needed to bring on a plastic surgeon and was told, “No, this will be easy.”

After her surgery, Julie awoke to a horrifying result with large dog ears on both sides of her chest. She suffered from serious complications as a result of egregiously poor

quality of care both during and after surgery – and from the denial of her choice to go flat and get a result she could live with.

Like many victims of flat denial, Julie has decided, for now, to try to make peace with the situation. Paternalism in medicine may be waning, but its wake is littered with the bodies of women like Julie whose choice was stolen from them. Who are left to cope with this trauma alone, and in silence. No more. Here is Julie’s story, in her own words – “speaking her truth.”

I Did Not Want Reconstruction

A little over two years ago (years that seem like a decade now), I found out I had triple negative breast cancer. I immediately was thrown into a world in which I knew nothing. I knew two things for certain; I would follow the advice of the oncologist I trusted, and if I needed a mastectomy, I did not want reconstruction.

While on chemo, I impatiently awaited the results of my DNA tests to find out if I had the BRCA1 or 2 genes, which would determine whether a lumpectomy or a mastectomy was in order. I was quite fearful, truth be told, that I did not have the gene, for if I didn’t, I might lose one breast or a part of one breast, and my insurance would not cover a double mastectomy. For whatever reason, the thought of being lopsided and asymmetrical really bothered me. So, when I found out I had the BRCA2 gene (and two other defective genes to boot) I was rather relieved. I could have a double mastectomy.

Around that time, an article had come out in the New York Times about women choosing to go flat. I don’t really remember much about the article, but I was surprised that “going flat” was considered radical. The idea of having implants baffled me. The idea of having two fake, nipple-less unfeeling and unresponsive lumps on my chest actually horrified me. I’d always rather envied small breasted woman, truth be told. I’d been carrying around a cup size F or G on a 30 inch chest wall since I was twelve years old and a part of me looked forward to the freedom of not having to wear a painful bra all day, the expense of having to purchase European bras, not sagging any further, and the idea of perhaps running like I was a girl again.

I truly saw the silver lining in the double mastectomy cloud.

One takeaway I had from the little bit of reading I did is that I needed to find a female surgeon. A man would not do, for he’d surely have a patriarchal attitude that would pressure me to be “normal” and get those implants like most other women do. I live in a small rural town, albeit with a good hospital and good oncology department, but there are only two general surgeons, both men, at the hospital. So, I went surgeon shopping. One name kept coming up again and again, a woman at a large hospital in a city a little over two hours away. So, I made an appointment to see her. When a nurse called in advance to talk some things over with me, I was clear that I did not want reconstruction.

I Felt I Was in Good Hands

My husband and both my sister and brother-in-law came with me to the appointment. We were all awed by the impressive new-ness of the cancer center and felt I was in good hands. My husband and I met with the surgeon and was quite impressed. We had a rollicking good time, in fact. She had a dark sense of humor – so do we and we chatted like old friends for nearly an hour and a half. But, her office had arranged for me to meet with a plastic surgeon to talk about reconstruction after I met with her.

I said I had no interest in doing so and was confused as to why it was scheduled since I’d been so clear about my intentions. “Oh, we just want to make sure you know all your options,” said the surgeon. I remember feeling some pressure. Was I being too hasty or flippant about my choice? Still, I talked some more about why I did not want fake breasts and the surgeon told me she truly understood how I felt and that she, too, might make the same decision. I did feel understood. She examined my breasts in private before we left. The exam lasted no more than five minutes. We went home.

Growing Unease

I had to wait five weeks until after my chemo was done before surgery, and during that time I joined a Facebook group for women who go flat. I started seeing photos that showed mostly awful results. I saw women who had been as clear as I had who had doctors “leave something extra just in case you change your mind.” I saw a lot of unhappy women and very few with results that I considered “smooth and flat” as I would have liked.

I began to look at my body like I do some sewing. I recalled the surgeon saying the surgery was “easy – so easy I could teach you to do it!” My wide pendulous breasts started at my back. How easy would it be to surgically remove them and leave a nice result? I pondered the fact that we’d never discussed outcomes at the meeting. Over and again, I had to explain why I wanted to go flat. Never did we discuss what that would look like. Being flat just seemed to be not choosing implants. Or perhaps not caring what one looked like afterward.

So, I got in touch with the surgeon’s office. I called. I emailed. Again and again, I was told “Don’t worry so much. You’re thin. It’ll be easy to make you flat and smooth. Dr. Beckett (pseudonym) is a great surgeon.” And not once did I question my growing unease – after all, I’d been uneasy for six months of chemo. Dr. Beckett was someone everyone admired and told me I was lucky to be having surgery with. I put my unease aside and assured myself that I was in good hands.

In retrospect, I wish I had listened to myself. I hadn’t gotten what I wanted – a discussion of the outcome. I had been grilled too much about why I wanted to go flat. I had to tell the surgeon, a nurse, and a social worker why I wanted to as if having to prove my sanity. I’m telling this story backward, but later my oncologist told me that I should have told them I was a trans person in order to be heard properly.

Surgery Day: I Felt Like Everything Was Wrong

The day of the surgery we were in for a surprise. I was having the surgery at a day center! I knew I wasn’t having the surgery at the hospital, but I did think it was a surgical center, not a day center, not a place where there was no food for patients and they got you in and out as fast as possible. Here I was, having both my breasts removed, and most of the people there were having tiny procedures – things like having cysts removed. I was baffled because I was supposed to stay overnight.

Well, it turns out that they do let people stay overnight, but there are no services – just a nurse and a security guard to oversee things. They let people stay overnight if they live far away; it’s simply a courtesy. If you want food, someone has to bring it in. So, I’m in prep and thinking, “This is no place for a mastectomy!” If I wasn’t in so deep, I would have left right then and there. My sister-in-law, who had come down with me, was upset and tried not to show it. And on top of this startling news, there was a snowstorm bearing down on us.

The surgeon came in and wrote something on my chest. She was in a hurry. Honestly, I don’t remember much more about the pre-surgery except my fear and angst. Fear, because I was having my breasts amputated – the feeling of impending loss was huge – and fear because I felt like everything was wrong. I was being treated like a piece of meat.

“… I felt like everything was wrong. I was being treated like a piece of meat.” – Julie

No one spoke to me about what was about to happen. I had no opportunity to even begin to process the emotional toll of the surgery. It was the most non-nurturing and non-supportive environment imaginable. The cancer center may have been impressive, but this place was not. The waiting room was beautiful, cavernous and full of life, but once you were behind the doors and in the surgical waiting area, it was one big un-private ER-like setting. You could see everyone and they could see you.

And then it was done.

The Aftermath

Dopey and cold, I awoke, bandaged up. The surgeon had gone home; she couldn’t spare a moment to speak to me. It was snowing outside. The place was already clearing out. The staff was low. My sister-in-law was very concerned that we just go home. She was afraid that we’d be snowed in and unable to get food and the staff agreed. Just three hours after I went into surgery, we got into a car, in the snow, to make the drive home, me nauseous from pain meds and confused and emotionally both numb and terrified. I could see that I had severe bruising above the bandages. They were worrisome. Big black bruises and an enormous amount of swelling. The nurse who discharged us didn’t know anything about mastectomies – “We’ve never had anyone who’s had one here before.”

I was discharged without pain medication. The story here gets long and crazy and convoluted and I won’t bore you with it. I’ll skip to the fact that three days later my chest wall burst open because those bruises were not normal – I had been hemorrhaging for days. I was taken from my apartment in an ambulance where I needed a blood transfusion as I’d lost so much blood when the stitches burst open.

It was after this that I finally saw my chest. I had one huge notch taken out of my left side and on the other it looked like part of my breast had been removed. I had “dog ears” under both arms. What on earth? What happened to the “don’t worry – you’ll be flat and smooth ‘cause you’re thin?” The scars were jagged. It looked like the surgeon had done the fastest easiest job she could in the least amount of time, and indeed that appeared to be the case. She had told my sister-in-law that it would take 1 1⁄2 to 2 hours to do the surgery. She was done in an hour and twenty minutes and then she disappeared from the building.

She did a horrible job. It grieves and angers me to think that this woman treated another person – another woman, too – with such a lack of care. I had asked if a plastic surgeon should finish the job. “Oh, that’s not necessary! This is easy” she said. Sure, it’s easy, if you do a slapdash job. But no, I suppose her ego was too big to think perhaps that my wide-slung breasts on a tiny frame might pose a problem for her skills.

The male surgeon at my small local hospital did some revision when I had my chemo port taken out. I needed further surgery as I kept having seromas near the place of the original hemorrhage. He did a bit of liposuction then, but I really didn’t want a lot of surgery, so I’ve still got one dogear. The scars where he worked are neat; on the original surgeon’s side, they are not.

Making Peace With What Happened

I heal scars easily, so at this point, I just look like a human doll with a concave chest. I see photos of transmen and have to admit I’m jealous. I’m okay with not having nipples – none of my Barbie or Skipper dolls had ‘em so I suppose it isn’t as weird as I thought it would be.

I feel lucky that my being an artist has helped me accept my form to some extent – it’s not “pretty” in any sense of the word, but it’s interesting. Would I like to have had a better result? Yes indeed. Would I have liked to be treated like a human being with reasonable needs? Even more so.

Every time I see my chest naked I am reminded of the violation that surgeon did.

Still, I haven’t had any more surgery. I’m now 61 years old and I simply do not want to go under the knife again. I’m learning to love or at least accept the rest of my aging body without plastic surgery and my chest seems to be a part of that. This is what happened. It isn’t right, but it is my reality. If I chased some idea of perfection now, for me it would be a slippery slope to wanting cosmetic surgery elsewhere. Still, some days I think otherwise. . .

I like to find the silver lining in things, so here they are: One surgeon did treat me well (a man). My husband never once questioned my decision. I have never once been judged by others for going flat. I am comfortable being flat. I have reinforced my own sense that my externality is not that important. Being alive and vibrant is.

However, women who choose to not have reconstruction need to be treated with respect. I was not, and it sickens me that that is not exceptional. Websites and brochures about breast cancer do not show women their options. They do not even show real photos of reconstruction nor do they really explain the long arduous process of that. Breast cancer doesn’t get you a “free boob job” nor is it even about breasts. Sure, we may have mastectomies or lumpectomies, but having cancer treatment of any kind is about living. And living with lousy surgeries adds insult to injury.

Hopefully, things are changing thanks to women speaking out, speaking their truth, and talking back to the surgical world.

Editor: Thank you, Julie, for speaking your truth.