WOW what can I possibly say?? Perhaps I was a little more nervous about this appointment than I let on because OH MY the feeling of sweet, sweet relief!
So I get to the appointment this morning and based purely on my blood pressure the tech is like “are you a little nervous?” Uh, yeah, maybe just a bit. But no sweat. I was ready! And I’m glad I was… because my (awesome) doctor was 110% behind everything! We started out with me reminding him of how he told me to call when I was 25 and he says “and you actually did?! No one does that!” Ha! This IS [control freak] me we’re talking about! He had a nice little med student with him which I have a soft spot for after nursing school (so awkward being the student!); they did an exam of which I’m relieved to say he felt nothing other than glandular (dense) tissue (which I knew about) and rib. Woot!
At that point I can tell he’s about to launch into the “options” speech so I rather nicely interject with “before you get on that… I’m not interested in surveillance… prophylactic mastectomy it is.” He was only slightly surprised at my go-get-it-ness, but I quickly explained how I already have to do 6 month checkups for my VP shunt with my neuro-ophthalmologist and yearly head CT scans (long story for those that don’t know… basically when I was 17 I woke up one day and couldn’t see… have this weird condition called psuedotumor cerebri where my intracranial pressure is high and therefore I had a shunt put in that drains the excess fluid… all is well and good since then but it is a permanent thing) and that that’s plenty. And that I’m basically a shit magnet (yep, really said that) to which he couldn’t help but concur. He jumped right in with telling me it was the right decision, so before my moral support (mom and friend) came in, he showed me where the incisions will be (will be barely noticeable underneath the breasts) and briefly explained that it would be as nipple-sparing and skin-sparing as possible, unless he runs into cancer, which at that point they would take the nipple on that side.
So with moral support in the room, he then took plenty of time to explain everything… and didn’t even laugh TOO hard when I asked if it was too crazy or if we could pick a date… TODAY. So barring any schedule changes, ladies and gentlemen we have a date: August 6! He even went so far as to tell me how proud he was of my decision, as he was actually dreading having to follow me, knowing my risk factors were so high. The biggest one being my cumulative radiation exposure… between my shunt and my 2+ years in high school/college where I was sick with pancreatitis (another long story… doesn’t need explanation if you don’t already know… just trust that it was a crappy couple of years), it all adds up… and it’s a lot. And as the sole problem with BRCA gene mutations is the body’s inability to process radiation, he confirmed I was just asking for trouble. I did ask about his preference for immediate reconstruction versus expanders and he bluntly said there is no option… expanders are absolutely the way to go. That he gets every last bit of breast tissue (down to the dermis) and that the flaps need time to heal and stretch, and that he wants no unnecessary stress on anything. I’ll be in the hospital for 2 nights (“one for each side” – no joke, that’s really how he said it… similar sense of humor, much?) and he said I’ll be bored out of my mind and ready to go back to work after about 2 weeks! That’s SO not horrible!
So after the initial surgery there will be a 12 week period where I will have rocks for boobs (no joke – the expanders are the most unnatural thing ever) and will go to the plastic surgeon weekly to have saline injected into the expanders. This will slowly stretch the skin and muscle (the implants go under the muscle), and when we get them to the size I want (probably just a little bigger than I am now for what it’s worth), there will be an exchange surgery. This is a super quick operation where they basically just swap out the expanders for the permanent ones… so we’re looking probably mid-November-ish for that. Yes it’s a process, but I wholeheartedly trust that this is the way to go.
So the steps from here: he was glad to hear I’m already set up with the gyn-onc (Thursday). I’m having a breast MRI on March 5th to make sure that everything is good to go and that there’s nothing there now (fingers crossed!) They actually had an opening today but there’s some funky period math (hormones and such) to make sure they don’t find any false positives and the math failed me, so March 5th it is. Probably for the better… that may have been a bit much in one day! They put in the referral for the plastic surgeon (“the best plastic surgeon I’ve ever worked with!” – huge relief there) so that will be the next big appointment. Other than that if all goes well, I won’t see my breast surgeon until late July for pre-op (!) That seems crazy!! But then I think how February is almost over and OMG how did that happen?! Looking at my calendar for the next 5 (!) months I know it will be here before I know it.
It’s hard to believe this is all falling into place so well… what did I say about wanting to be a girl with a plan?! This was the weirdest thing though… I went to schedule the MRI and by the time I made it to the surgery scheduler, she had already talked to the plastic surgery scheduler and she says “How about August 6?” No joke I literally had “Surgery??” in my calendar for that day. CRAZY!! The only other thing that will make scheduling for the actual day fun is that there has to be a neurosurgeon on call in case they run into problems with my shunt… it goes from the top of my head (through the ventricle) and ends in my abdomen… it’s the whole not knowing exactly where it goes to get there that could potentially cause issues. My surgeon has actually done a number of mastectomies on shunt patients which is huge to me, as it could understandably cause a hiccup… and he even saw one that actually went through breast tissue. There hopefully won’t be any issues but I’m relieved to know he’s cautious!
I refused to leave before getting a chance to see my beloved genetic counselor. While she wasn’t the one that helped with my initial diagnosis, she has been amazing every since and heads up the local FORCE group I go to. She’s a huge support and was so excited to hear everything.
I seriously cannot even put into words just how relieved I am right now. To have a world-renowned expert reiterate that I am making the right decision? Wow. Talk about powerful. Once these other few appointments are taken care of, it should be smooth sailing till August… 168 days, but who’s counting?!