This isn’t the full story, of course, but it’s a big part of it.
I didn’t have cancer, I was under 40, and my genetic testing was all negative (as in I don’t have any of the known cancer gene mutations). It was a family history of breast cancer, extremely dense tissue, and a nagging ache in my breast/rib that led me to get extra testing done, and that testing (MRI to be specific) is what ultimately led me here.
Whangapoua, New Zealand, March 2023, a month after my first mammogram.
My risk of breast cancer was calculated at 40%. This means I had a 40% likelihood of ever acquiring breast cancer in my lifetime. For comparison’s sake, if I had tested positive for a BRCA gene mutation, my risk would be about 80%. In a way, that would have made my decision much easier, but of course I was grateful to be negative.
When it comes to cancer prevention, not everyone has the same risk tolerance. For some, a 40% chance of cancer might mean that a “watch and wait” approach makes the most sense. For me and many others, 40% is not something we want lurking in the back of our minds.
Since I have never been diagnosed with cancer, I have thought of my surgery as prophylactic. However, my doctors informed me that my case was considered therapeutic as well as preventative. This is because I had a lesion of Atypical Ductal Hyperplasia, or ADH, consuming a large portion of one of my breasts. These are cells that are labeled as either precancerous, or described as encouraging the growth of cancer. Regardless, the standard approach is to have that area removed. I decided to have a double mastectomy with DIEP flap reconstruction, which is a surgery that removes all breast tissue and then takes belly fat to make new breasts.
My risk was not nearly as high as many of the women who have this surgery. Double mastectomy is not typically the first line of defense against ADH, either. My decision was my own, and many factors were involved. You can read about them in detail in this article I wrote.
Yes, I endured a long recovery. I couldn’t lay flat, so I slept propped up with wedge pillows, and I had to expel fluid multiple times a day from each of four drains that stuck out of my body. My husband had to physically sit me up because I wasn’t allowed to put weight through my arms. I didn’t pick up my three-year-old son for three months.
But I am here.
A weight was lifted when I knew all my breast tissue was gone and my biopsy was clear. We certainly can’t plan for everything, but my plan to not get taken out by breast cancer is under control at this point, and that feels pretty good.
There is no way of knowing how long it would have taken for those cells to become cancerous (if ever). But I was not willing to wait around to find out. I wanted the peace of knowing I reduced my risk percentage by as much as possible.
I am happy to report that I got what I came for. My risk is now calculated at 1-5%. I doubt any doctor would ever say 0% chance, and people who have had my surgery do sometimes get diagnosed or rediagnosed with cancer. But it is rare, and there are ways to stay on top of checking.
I will not be getting mammograms, and I will not be having further biopsies or other scans of my breasts unless there is a concern. I will be doing self-exams and I will see my breast surgeon annually for an office visit. One of these times, maybe I won’t cry happy/grateful tears when I see her, but it hasn’t happened yet.
Ever since my mom was diagnosed with breast cancer when she was 46 and I was 16, I have had a fear the same thing would happen to me. That fear is essentially gone now.
I traded my boobs for peace of mind, and I’d do it all over again without hesitation.
xo, Amy
P.S. My mom’s cancer was stage 1. She had a lumpectomy, and then a single mastectomy with TRAM flap reconstruction. She had chemo for several months, and has been cancer free for the last 23 years. Yay for routine mammograms <3