Alison* is a 57-year-old woman living in Seattle. After being diagnosed with stage 1 breast cancer when she was 30, she opted for a bilateral mastectomy and implant restoration. Since then, she has undergone at least a dozen breast surgeries to correct the issues—and the journey isn’t over. This is her story, as told to Alix Tunell and edited for length and clarity.
All my life, every time I went in for my annual exam, my general practitioner would ask, “When do you do your monthly self breast exam?” And my answer was always, “After my period.” I was aware of that, and I did it—I knew my breasts.
One night, I was in bed reading and just happened to reach over and feel a noticeable lump, about the size of a marble. I got up and showed my husband, then made an appointment with my doctor immediately. He aspirated it, and the cells came back as atypical, so he sent me to a breast surgeon, who did a biopsy and told me it was invasive ductal, a very aggressive cancer. That was July 6, 1993. I was 30 years old and the mother of a 4-year-old girl and 18-month-old boy.
I’m adopted, so I didn’t know anything about my genetic history at the time (I later found out my biological mother was diagnosed with breast cancer many years after me and her twin after her), and I had to make this big decision about what to do.
After talking to a few doctors, I decided I wanted to do a bilateral mastectomy rather than a lumpectomy, and I remember really having to fight for that decision and being made to talk to a counselor. To me, it was peace of mind to take both breasts, not overkill, because the younger you are, the higher the chance of recurrence.
My first breast surgery
A couple of weeks after being diagnosed, I had the mastectomy and reconstruction done together. It was the most painful event I’ve had in my life other than childbirth, and I really didn’t feel I was properly prepped for just how painful it would be. They took the breast tissue out and put the implant underneath the pectoralis muscle with tissue expanders. All I can remember is waking up in the hospital and feeling like they had rubbed Bengay all over my chest—it was burning hot and raw. I wasn’t supposed to lift anything, but I had this baby boy and little girl at home. It was incredible to think that I still had to take care of them through this.
Then, even though my nodes came back negative, it was recommended that I start chemo just because the initial cancer was so aggressive. I don’t think in today’s protocol they would suggest it given my state at the time, but back then, they gave me a month to recover before starting seven months of chemo. I was getting that weekly, sometimes every other week. Every month, I’d also get the tissue expanders filled with saline. It took me about six months to get to the B cup that I wanted.
For the nipples, my plastic surgeon sewed the existing skin in a horseshoe shape and cinched it up, which made a little indent he tattooed afterward. It was a beautiful outcome, and I was unabashed about showing people that breasts don’t have to look deformed after a mastectomy and advocating for women to do self-detection. My plastic surgeon showed me that if you put a flashlight up to the implants, they would illuminate bright orange—so that was my party trick.
My breasts were good for about seven or eight years, at which point I swapped the saline implants for silicone, which are less firm and hadn’t been an option when I got my mastectomy. The new implants were fine for six years, then I started developing really severe capsular contracture. They were beginning to look like half a grapefruit under the skin on my chest and were getting very hard and tight. My plastic surgeon wasn’t covered under my insurance at the time, so I had to go and see another surgeon, who swapped them out.
Over time, the capsular contracture came back, and my breast skin started turning purple. I didn’t know what was going on, and I soon learned about another type of cancer associated with implants that can be contained around them. It was 2015, and I decided to get rid of the purple boobs—this time, with the original surgeon. Ten days post-op, I developed a hematoma and was bleeding outside the incision, so I had to go back in for evacuation. The end result, a month later, was that one side was way bigger than the other and one side had dropped. My surgeon offered to do a revision, but I was like, Wait a minute. Why am I going to go back so you can possibly botch it again?
My breast surgery revision process
I found a new doctor and had six breast surgeries with him over the course of the next two years. He had to put tissue expanders back in and do injections of saline again to save the pockets, and it was all made more complicated because of my scar tissue, my aging skin and the development of hematomas. I also needed quite a few adjustments of the implant size.
Today, things still aren’t right with my breasts. They’re too big, there are lumps and bumps… I’m just in a lot of pain. So I made a consultation with a plastic surgeon who is an expert in reconstruction and specializes in a pre-pectoral (above the muscle) approach. Two weeks after meeting with him, the news came out about textured implants being recalled by the FDA because of breast implant–associated anaplastic large-cell lymphoma (BIA-ALCL)—and my implants are on the recall list. So this November, I’m going to swap the textured implants out again and go from under the muscle to over the muscle, and it’s going to be a really involved breast surgery because I have animation deformity. Animation deformity is where your pectoralis muscle has rolled up like a window shade, as opposed to lying flat against your whole chest wall, and every time you contract your pectoralis, the implants move up and down. So my surgeon is going to have to pull the implants out, go up and grab the pectoralis muscle, pull it down and attach it to the chest wall or rib cage, then put the AlloDerm (tissue matrix) in. He’ll slowly fill those tissue expanders over three months, and then next year I’ll have implants put in. I’m told the pain level is going to be brutal and very similar to the mastectomy.
Related: FDA Requests Recall of Allergan Breast Implants Linked to Cancer
I absolutely don’t regret doing the bilateral mastectomy—I’d encourage anybody [facing cancer] to do that. But I probably would’ve allowed more time between all the implant revisions I did in two years. It’s partly perfectionism on my part—I want the old breasts back, and they’re never going to be the same or perfectly even. I guess it’s vanity that I can’t take them out and go completely flat; but cancer is already a constant reminder in my life, and not having breasts would be one more.
*Name has been changed to protect privacy.
