Who knew I'd be almost eager to have a Preventive Bilateral Mastectomy (PBM) with DIEP Flap reconstruction. Have I lost my mind? Has my rabid internet searching regarding BRCA gene mutations pushed me over the edge?
It's so strange. To be almost excited about a surgery that will change "the girls" forever. A very extensive surgery with many risks. So odd to be hoping that the CT scan I had last week will show that there is good blood flow to my lower abdomen giving me the final "yes" verdict making me a good candidate for DIEP Flap reconstruction. So very unexpected to be anxious about getting a date for the surgery on the calendar before the end of the year.
My perspective has shifted dramatically since April when I found out I was positive for the mutation 3398del5 in BRCA2. Until just a few months before that I wasn't very concerned that I might get cancer. Even though my Mom and her sister had both had breast cancer and multiple relatives had ovarian cancer and other cancers it really wasn't something I worried about. I pushed all that out of my brain by thinking that I was really more like Dad's side of the family so I probably didn't inherit any of those cancer genes. The overwhelming emotion I felt when I got the gene test result was surprise.
As the surprise faded I became almost obsessed with finding out more about what the BRCA thing meant. I've spent hours on the internet. I'm so very thankful for my BRCA sisters and especially the information provided by FORCE. God bless each of you preventive surgery pioneers! Your willingness to share your stories online has made my journey so much easier. It has made it possible for me to make these difficult choices knowing the risks, knowing the upsides and the downsides. Knowing these things from first hand accounts of my BRCA sisters. Thank you, thank you, thank you!
After my rabid research phase I decided to take things one step at a time. The first step for me was good bye to my one lone ovary. That was 7 weeks ago. Since I was already menopausal it was truly a no brainer for me. In my experience, other than the expected menopause symptoms, it wasn't really a big deal.
For me, from day I found out I was a mutant the idea of removing "the girls" was pretty scary. Really hard to even think about at first. I decided early on that I would just take a step at a time and only move forward when I felt strong enough. In the beginning, I pictured myself ramping up surveillance and maybe never going down the PBM trail. As I read the stories of my BRCA sisters online, looked at pictures of the many reconstruction options it started to seem like something I might do someday. When I researched the DIEP Flap reconstruction I found myself thinking "that's what I want". It didn't happen overnight but it happened pretty quickly.
My internal dialog behind choosing a PBM goes like this:
"If I wait until I get cancer my options for reconstruction will probably be restricted and constrained by the need for chemo therapy, radiation treatments, and the need for lymph node removal. I saw what my Mom went through for the three years between her diagnosis and her death. I'm not sure I want to go down that road. I might not chose to have chemo and put up with the side effects and agony it brings. I might just take the time I have left and make the best of it. Mom and her sister both went through intense prolonged misery during their treatments. It worked for my aunt (so far) but it didn't work for Mom. The last three years of her life were filled with pain and sickness. I'm not sure I want to spend my last days that way. It's something I won't know until or unless it happens. Also the waiting after tests and being called back because there is a calcification or something that requires more tests is completely nerve wracking. Having experienced this already I'm sure the surveillance route will push me to PBM at some point anyway. Why not get it over with."
My thinking is basically "better safe that sorry".
To understand my choice for DIEP Flap you need to know that I've always been less than satisfied with my tummy. Even before pregnancy I wanted to hide my tummy because I thought it was my least attractive feature. This feeling got worse after my son was born because I had horrible stretch marks. And got even worse when I ended up with a horizontal abdominal surgery scar from just below my ribs, around my navel and south to my pubic bone. Ugly, ugly, ugly. I often joke that if I had 4 more nipples I'd look like a female dog. My young granddaughter once asked me if my tummy was my butt. With this background it's pretty easy to understand why the DIEP Flap reconstruction appeals to me.
In addition to the ugly tummy motivation I should mention that my weight has always fluctuated. Prior to age 40 the weight range was between 140 - 190 pounds. Post age 40 it is more like 155 - 215. Currently, I'm at about 165. I've been on a weigh rollercoaster since puberty. So if history is any indicator I think I can count on the a continuing weight fluctuation. So here is the implant dilemma. What if I get implants on the low end of the weigh rollercoaster and then gain weight? No boobs and big giant belly doesn't sound good does it? Or get implants on the high end of the rollercoaster and then loose weight. Instant porno boobs! Also not attractive.
My internal dialog behind the desire for a DIEP Flap goes like this:
"I really, really, really don't want implants because of the weight fluctuation thing and because of the way they are attached. I get freaked out by the idea of something being implanted under my muscles. I have a tendency to produce scar tissue. I have adhesions from previous surgeries. What if I have the same issue with implants. Love, love, love the idea of a new tummy. Love the idea that my boobs would gain and loose weight along with the rest of me. Love the idea that new boobs would age with the rest of me too. Get so excited about having a new tummy. Wouldn't it be nice to have something good along with the whole scary PBM thing?"
If I can get a DIEP Flap I'm ready to get this done. If I can't get a DIEP Flap I'm afraid I'm back at square one. I will seriously consider PBM with no reconstruction.
So there it is. A play by play of how my perspective has changed. I find out Monday if the scan shows good blood flow! I'm crossing my fingers and toes that the DIEP Flap is a go.
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