I do not have breast cancer. That is a complicated statement I can now officially make that surfaces feelings of relief and gratitude alongside anxiety and fear. In October I was diagnosed with having the BRCA1 gene mutation. You can read my initial thoughts about it here. Since finding out, I’d felt a dark cloud lingering over me but after the results of the mammogram and an MRI coming back clear, I can breathe easier and now have the green light to take my next steps.
Those steps being scheduling various doctors appointments, being pressed to make difficult decisions and moving forward with preventive surgeries that will prolong my life. Like the decision I’ve made to have a prophylactic bilateral mastectomy with reconstruction in the spring of 2021.
“But…you don’t have cancer? Why would you do that?”
A question, from well-meaning people that I’ve heard a lot more than I expected, yet did not sting any less the fourth or fifth time. So let me explain…
By having this gene mutation, according to my oncologist, I have a 80% chance of getting breast cancer and a 40% chance of getting ovarian cancer, in my lifetime. The logical side of me recognizes that 20% is too low to sit on this. Especially considering all my family members that have been touched by this disease — 4 out of 7of my Tias, with 3 of them ultimately succumbing to it. My choices are, either I can just wait until I get it, having tests done every 6 mos. (with that dark cloud lingering) OR I can take control, by having a surgery, and lower my chances of getting breast cancer in my lifetime to 5%. Although this is a decision that I think I knew I’d make since being diagnosed, it is still filled with many emotions and, frankly, it is scary as hell.
After speaking with my mastectomy surgeon a few weeks ago, I learned that I will be under for roughly 10–12 hours and have two different surgeries by two different surgeons in that time. Teamwork makes the dream work. The first surgeon comes in to remove all the breast tissue and possibly lymph nodes in my breasts (yet another decision I need to make that could bring up other issues). She will then take it to a lab and “chop it up to look at it under a microscope” ensuring I did not have cancer cells in that tissue. Side note: She literally said it like that while also moving her hands quickly in the air, motioning as if she was actually chopping something. I’d be lying if it didn’t make me feel a bit funny. Surgeon humor?
The second surgeon, who I’ll meet in January, is the plastic surgeon that will then replace the breast tissue that was removed. Sounds easy enough, right? I wish. I have more decisions to make like — what kind of reconstruction will it be? Will I do Implant reconstruction: Inserting an implant that’s filled with saline (salt water) or silicone gel or Autologous or “flap” reconstruction: Using tissue transplanted from another part of my body (such as belly, thigh, or back)? And of course, there are pros and cons to each, so it isn’t as easy of a decision as I had hoped. Womp Womp. This also brings up another common comment that stings more than I’d anticipated.
“Well, at least you’ll get new boobs!”
I wish it were that easy, but here’s the thing… my foobs (Fake Boobs) will literally be fake, foreign and unfortunately, my scars from the surgery will be very noticeable. Common augmented boobs, or boob jobs, are implants being added on top of your breast tissue with minimal scarring. This is an unexpected decision that came from learning that my breast tissue will likely kill me if I keep it. Another downside is, I only have a 10% chance of getting the feeling back post-surgery. Bleh. Needless to say, it is completely different so if you meet someone else that has to walk through this, I’d recommend not trying to silver line it. It’s complicated.
After this surgery I’ll have more decisions to make like — when do I take out my ovaries? What will we have to do about hormones? Do I freeze my eggs? Do I even want kids? As a single woman, how will I feel being around a new partner? Will he be weird about it? Will I be? SO MANY FEELINGS pop up with this diagnosis (as if I needed more…)
My transparency and candidness in my writings are an attempt to help shift the ideas that we have around preventative surgery as well as, the misunderstandings around genetic testing. I never expected to be so emotional with the prickly, well-intended comments and questions but alas, they do cut, despite the intent. As I continue to share my experience while walking through this, I want you to know that I find sharing this extremely cathartic, so thank you for reading.
Genetic testing is truly remarkable. I want shout from the rooftop that I am incredibly grateful and fortunate to live in a time where there are tests that can give me a “heads up” on a disease that has taken too many loved ones. Until I find that rooftop, I’ll continue sharing here.
xo, Vetters
