Lisa – “Nothing could have prepared me for what I looked like after surgery”

Editor: Lisa had OVER A DECADE to decide what surgical option she would choose if her original breast cancer returned.  Still, her surgeon unilaterally decided to leave her with a skin-sparing mastectomy to facilitate future reconstruction. Lisa says in her story that she should have consulted a plastic surgeon… but, as we know from my own story (Kim) and others, bringing a plastic surgeon onto the team does NOT guarantee a decent flat result.  The onus should be on the surgeons to ensure the patient knows what they are “consenting” to… when a patient feels that her decision was ignored, did she consent to that procedure? NO. For anyone reading that thinks they should have done x, y, z… I am here to tell you. This is NOT YOUR FAULT.  The fault lies with the paternalistic surgeons. Lisa deserved better and so does every woman facing mastectomy.  Our bodies, our choice.

My story, as it relates to breast cancer, began in 2004. I was in my third year of law school and having no insurance, went to the campus health center for my annual exam. I complained about a lump I’d found in my left breast that was really sore and bothering me. After the exam, I was told it was nothing to worry about, that I was too young for breast cancer, and to have a mammogram when I turned 40. I was 33 at the time and the following year I complained again to my new doctor. Fortunately, she took it seriously and sent me for a mammogram and ultrasound. I then had to see a surgeon for a biopsy and he recommended removing the lump since it was painful even though he thought it was very unlikely to be cancerous. Surprise! The surgeon came to see me before I was discharged and told my wife and I it was indeed breast cancer. Next came an additional lumpectomy under a new surgeon because the first one didn’t get clean margins (and was a huge jerk!), followed by chemotherapy and radiation. Then I got about the business of moving on with my life, which was littered with a seemingly endless list of ongoing side effects.

Fast forward to 2017. Over the years I vocalized many times that if the cancer ever returned, I would get a double mastectomy without reconstruction. I had the opportunity to research the available options during that time when I had a couple of scares that turned out to be benign. I knew I didn’t want foreign things in my body and I definitely didn’t want to cut muscles just to have boobs! [Ed. For the uninitiated, autologous flap reconstruction uses the patient’s own tissue to reconstruct a breast mound, and some of these procedures involve transplanting muscle as well as fat and skin.]  I started wearing a bra in the 4th grade and had large breasts my whole life. I had back pain and at this point, I also had a significant size discrepancy between my breasts due to radiation from the first time around.

So, December 8, 2017, I went in for a core needle biopsy. It hurt like hell and my surgeon was so kind about everything. He had performed a lumpectomy on me in 2007 (one of the scares) and did such a good job that I had to actually search to see the scar. I remember telling him that afternoon that if it was cancerous, I already knew that I wanted a bilateral mastectomy without reconstruction. He promised to call me that day with at least preliminary results and he kept his word. My phone rang a little after 8:00 pm that evening and it was my surgeon calling to tell me that, unfortunately, my cancer was back.

Honestly, I took it pretty calmly, I think because I already knew. I told him again that I wanted a bilateral mastectomy without reconstruction. He said the bilateral part wouldn’t be a problem because I had another lump on the right side as well, we just hadn’t biopsied it yet (it was cancerous too). As for the reconstruction, he wanted me to let it all sink in and think about it. I said I’d already thought about it for a long time and really didn’t want additional surgeries, but since it was Friday night…ok, sure I’d think about it and would be calling Monday to get on his surgery schedule.

During my pre-op appointment, I saw him again and we kind of went through the whole conversation again. Should I have consulted a plastic surgeon before surgery – yes, absolutely [Ed. The onus should be on the surgeon as the medical professional, to refer the patient to a plastic surgeon when the circumstances necessitate that – this is literally in the Hippocratic Oath] – but when my surgeon said he thought it should be done within the month because it appeared aggressive and it was on both sides, I went with his professional opinion. And when my surgeon said even if I make you as flat as I can, you can always change your mind later and have reconstruction with implants, I did not understand that he meant I was going to look like the Bride of Frankenstein!

Nothing could have prepared me for what I looked like after surgery and I have gone through a lot of mental anguish over my appearance. Am I thankful to be alive? Of course I am. But I also think I should have the right to make up my own mind about how I’m going to look and what I want my body to feel like.

THIS IS NOT OKAY…

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“Nothing could have prepared me for what I looked like after surgery… THIS IS NOT OKAY” – Lisa

Published by Not Putting on a Shirt

Founder of Not Putting on a Shirt, a mastectomy patients' rights organization that advocates for optimal surgical outcomes for patients going flat.

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