Hi Team Cheer on Jessie, 

Monday (4/11/2022) at 9am CT is my next surgery OR time. Please send me good thoughts, or prayers, or visualizations, of a complication free surgery, easy recovery, and clear pathology report. Send them in your hearts, via text, via email, or post. Please don’t expect a response for a while….I might (errr…will) be on narcotics, or at least altered, for a few days. 

Thankfully my COVID test on Friday came back negative. Otherwise this would be delayed for 4-12 weeks. One more layer of “fun” (code for anxiety) when having surgery in these AC (After COVID) times. 

Monday will be a breast lift and reduction. This is the first of a multi-phase surgery series to have a prophylactic mastectomy and reconstruction, due to my BRCA2+ status. 

This surgery is outpatient. I expect to be home Monday night. It’s a longer surgery (~2-3 hours under anesthesia) than the fall. I am under the impression the recovery will be similar to last time. But likely easier since there are no abdominal muscles being cut or expanded. But I might have drains….so could be a toss up. 

Recovery includes: Not being able to lift my 2.5 and 4.5 year old for a month again.  (Thanks Mom for committing the next month of your life to care-taking. This would be next to impossible without you). Nor will I be able to lift my hands above parallel for two weeks…so I’ll even need help with dry shampoo. 

When having a mastectomy, you have 3 options: to go flat, to have implants, or to use your own body tissue to reconstruct breasts. None of these are a slam dunk or an obvious choice. They all have trade offs. If the nuances of this (or anything BRCA related from testing to screening to preventative surgery) are relevant to your life, I’m happy to go into waaaay more detail with you/your family member. 

I have decided to go the route of breast reconstruction with my own body fat. Using the belly fat I’ve worked soooo hard to grow from 2 pregnancies and breast feeding two kids. When you use belly fat it’s called “DIEP”. There are other acronyms for using other body parts (belly muscle, butt fat, back fat, etc.) used for reconstruction. 

So why am I having this first “prep surgery”? 

If the word “nipple” makes you uncomfortable, please stop reading, or use the rest of this as an exercise in being uncomfortable. 

You’ve been warned…..

In short, by having a lift and reduction, it allows me to keep my own nipples. (Versus not having nipples and gluing extra large googly eyes on my breasts for every doctor’s appointment until I get tattoos…I’ve spent way more time than I’d like to admit looking at strangers breasts online. Those with nipples, and those without). 

Plus, by going smaller (which I want) it reduces the chance of complications with the upcoming mastectomy. “The greater the mastectomy specimen weight, the greater the chance of complications”. (Aka bigger boobs = higher likelihood of surgery and recovery complications). 

Wait, you happen to know that your friends- cousins-girlfriend had a prophylactic mastectomy and could keep her nipples, without doing a lift and reduction? Yes, this happens. But she had much smaller boobs than me, and also didn’t breastfeed for a cumulative 40 some months, so her breast skin quality and nipple position allows for a one and done reconstruction. 

I tentatively have my prophylactic, skin sparring, nipple sparing, double mastectomy and immediate DIEP reconstruction scheduled for October 26th of this year. This is the “big one”, an average of 8+ hours in the OR, a multi-night stay in the hospital, and a multiple month lifting restriction, and PT. And drains. Like up to 10. 

Prophylactic means “intended to prevent disease”, aka removing currently healthy body parts because this is less traumatic than the likely alternative. Being BRCA2+  puts me at an 85% chance of breast cancer and a 20-30% chance of ovarian cancer if I don’t “do something (drastic)” to reduce my risk. I’ve already reduced my ovarian cancer risk by likely half. (And unless the field’s understanding of ovarian cancer changes in the next 7-8 years, I’m likely having my ovaries removed at 45). After the mastectomy this fall, my breast cancer risk goes into single digits, like 2-3% chance. 

After recently having my first “suspicious” findings on my annual boob MRI, followed by my first biopsy, I am very eager to be on the other side of the full mastectomy. 

But isn’t nipple tissue, breast tissue? And isn’t the point to take all breast tissue away? Yes. And yes. Even a few years ago this was a less common approach to prophylactic mastectomies. They have been doing them long enough now, that they are confident keeping nipples doesn’t increase cancer risk. This is new research in just the past few years. It’s amazing and encouraging how fast our understanding is expanding. Hopefully next they’ll figure out consistently preserving sensation….more on that in a future surgery explanation. 

If you’d rather not receive these surgery updates, please let me know, and I’ll remove you. There will probably be a handful more this year. No worries at all. 

If you just got added, and feel like you’re thrown into the middle of a story, the two emails I sent out in the fall, are below, with a little more context. 

If your partner or parent wants this level of detail, feel free to share this with them. 

Thanks for going on this journey with me. I’ll see you all in my OR dreams as I’m going under 🙂 

Xoxox, 

Jessie 

#BRCA #BRCA2 #EmailToFriendsNFamily