Brenda – “I should not have to feel embarrassed or humiliated by my own body, ever.”

Editor: Brenda’s story really shows what an impact we can have when we go public with our stories.  Breast cancer treatment is an extremely isolating experience. But now that we have flat advocates like Melanie Testa, Beth Fairchild, and others – now going flat is beginning to be normalized.  People are starting to realize that it’s ok not to reconstruct. And that as patients, we have the right to expect high-quality surgical care and a reasonably flat result. We don’t have to accept the “Bernards” (extra tissue) that so many women have been left with.  We deserve better.

Unfortunately for Brenda, even though she had expressed her wishes with crystal clarity to her surgeon… she was still left with lots of extra tissue.  It took her three surgeons and several surgeries to finally get the flat result she wanted. She experienced paternalism and disrespect at every turn, not only with her breast surgery but also prior, during her biopsy.  Even though she, like myself, “did everything right.” But she didn’t give up.

This has to change.  Women should not have to take extraordinary measures to get a reasonable, tolerable surgical result that they can live with.  Women deserve better!

Hello. I’m genderqueer (and have been since childhood). I got breast cancer 2 years ago, at age 45.

My cancer was located in the nipple of the breast and radiating out in a spider web fashion. It wasn’t the usual lump and went undetected at my last normal examination only months before. The first symptom I noticed was the nipple inverted and began to pull in. Within a month I had a lot of pain, swelling, and redness. The breast had deformed. The pain got worse as I waited for biopsies and the results, MRIs, mammograms, and X-rays. I couldn’t wait for surgery! I wanted the pain to end and I wanted that cancer gone. I wanted that breast OFF.

And I knew that I could ask for a flat result, thanks to the advocacy of Melanie Testa, whose pictures I saw long before cancer even became an issue in my life. So I strode confidently into the surgeon’s office and told him exactly what I wanted. Since my insurance would pay for a double mastectomy, I decided to look on the bright side: I was getting the “top surgery” that I had always wanted but could never afford. That was and still is, a little silver lining to the dark cloud of disease.

I was nervous before surgery and had to be sedated. I’ll admit, the morning of my mastectomy, I wasn’t at my best. Shaking like a Chihuahua! I was worried that it might hurt! But they took such good care of me, they truly did. They brought me blankets and pillows to keep me warm and they did the dye thing so they could check my lymph nodes. When I woke up, I felt fine – not nauseous like I usually do. I couldn’t help but pull the dressing back right away as soon as I could move my arms. I wanted to see my flat chest!

What a disappointment. The first surgeon left me with loose skin sagging down over my belly, and a portion of my right breast sitting at the center of my chest. He assured me that the extra tissue would “pull in”, but it didn’t. I had these weird, lumpy, “proto-breasts” that hung down. It was an ugly and frankly a humiliating result. A year later, after chemo and all the treatment was done, I was embarrassed by the appearance of my torso. I looked like I was wearing the human skinsuit that “Buffalo Bill” was working on, and he hadn’t got around to finishing the breasts yet.

I went to one plastic surgeon, Dr. Matthew J. Fox in the Dayton, Ohio area to ask about scar revision and chest sculpting. He assumed I wanted implants, and I flatly told him that I did not. He kept asking me “Why?” in this authoritarian, paternalistic kind of way, in a tone that suggested he was really wanting to ask me, “Are you mental?”  I did not go back, and I’m afraid I can’t recommend him.

Later, I consulted with a different surgeon, Dr. Ettinger of the Beavercreek Plastic Surgery Center in the Dayton, Ohio area. He listened, did not try to tell me what I wanted, and in a series of surgeries was able to fix what the first surgeon had left behind.

I have mixed feelings about the first surgeon. He basically saved my life. He removed the cancer that was sure to kill me otherwise. He didn’t talk down to me at all, ever, so I don’t understand why he left me with such loose skin. I guess I’m not as angry with him as I should be. I AM angry that I had to undergo multiple procedures to flatten out my chest so that I could wear a T shirt without having to put on an ace bandage underneath. That should not have to happen. I should not have to feel embarrassed or humiliated by my own body, ever. I should not be afraid to change my clothes around other people.

Editor’s note: It’s okay to feel gratitude to the surgeon for removing your cancer, and also anger at them for leaving you with a bad surgical result.  These feelings can and do co-exist for many if not most of us who have gone through this.

And for that matter, the Kettering Breast Evaluation Center in Dayton, Ohio has my anger. Just to veer off topic for one second, at my biopsy in April 2016 I wasn’t treated well either. One of the doctors in the room (they had brought observers) took his cell phone out when he came in and saw me. I don’t know what he was doing, and pulled the sheet to cover myself. HE PULLED IT OFF ME without saying a thing. It felt almost like assault. And speaking of assault, that biopsy was extremely painful and I don’t think they controlled my pain very well at all. I called the center later complaining about people just waltzing in without being introduced and hanging around cancer patients getting painful biopsies with their cell phones out. I don’t know what else to do about that regarding the way I was treated but yeah, they know I hate them I guess…

Today I have the confidence to walk around my yard topless. I often get quizzical looks from salesmen who come to my door – yep, it’s hot and I reserve the right to take my damn shirt off. I don’t exactly have the body I’ve always dreamed of, but it’s ok. I’m doing what I can to take care of what I have and enjoy the years I have left and trying to not let body issues get me down anymore.