Surgery to prevent a Gynecologic Cancer
I received an email from The Breasties with the following:
“With Gynecologic Cancer Awareness Month quickly approaching in September, The Breasties is excited to be sharing stories of Breasties in the community who:
have been impacted by a Gynecologic Cancer diagnosis
have had a surgery to prevent a Gynecologic Cancer”
This was what I shared:
It was February 2015. I found out not only did I have triple positive breast cancer, but that I inherited harmful variants in the BRCA gene. I had so many questions running through my head as I was told that just a blood test told my oncologist that I was at a higher risk for breast and ovarian cancer than women in the general population.
Our plan was to remove breast cancer first, but I knew that someday we would be talking about preventative surgery to lower the risk for ovarian or pancreatic cancer.
After treatment I began an ovarian cancer prevention program through Northwestern. It’s one of the only programs of its kind monitoring patients every 3 months with an ultrasound and CA125 blood test. After monitoring my health for a few years and having the painful discussions about fertility and the possibilities of conceiving a child naturally, I realized that in order to be healthy and around for any children, I should talk about doing something. I wasn’t ready to remove my ovaries because they were providing some estrogen I needed to keep my bones and heart strong. I also wasn’t ready to remove my uterus because I had hope that one day I could carry a child.
I chose to have my oophorectomy in May of 2018 a month before my daughter who was conceived via surrogate was born in June. The ultrasounds and CA 125 tests continued after surgery every 3 months in addition to the tamoxifen used to prevent breast cancer that I had been taking since December of 2015,10 months after my diagnosis.
When I first met with the team of doctors that oversaw the ovarian prevention program, we talked about monitoring until I was 40 and then removing my ovaries or having a full hysterectomy. This discussion changed after I had the oophorectomy with an unexpected ovary removal. After a few years doctors were seeing more patients in the study coming in for their ultrasounds and CA125 tests to discover cancer cells. The discussions I had with my doctors and husband started to shift to lessen my chances of recurrence and prevention. I went through testing for egg retrieval and uterine lining only to find out that I wouldn’t be able to go through IVF and my uterine lining was too thin for pregnancy. Having the extra estrogen in my body through a pregnancy wasn’t worth it for me either considering my estrogen positive breast cancer.
In February of 2022, I had a full hysterectomy, having my ovaries, uterus and cervix removed. I began to encounter pain from scar tissue, even lower libido and intimacy and side effects of menopause. I was in menopause at 36. I will continue to check in once a year with the ovarian prevention program. I am eating healthier, following a workout plan and had preventative surgery, however the words from my doctors hang over me “ a hysterectomy is risk reducing not risk eliminating, I still have my ovarian lining.” It’s never over like everyone thinks it is.
You can read more about my preventative surgery on the blog here.