WHEW, what a long day today was – Left at 9:30 am and got back home at 5:30 pm! But wow what an incredibly informative day! After I blogged on Monday, the plastic surgeon’s office called and actually had an opening this morning, which was perfect since I was already going down there to see the GYN-oncologist. Two for one special, much?

So starting off the morning with the plastic surgeon… I certainly respect the “best plastic surgeon I’ve ever worked with” comment from my breast surgeon – this guy is simply amazing (and says the same thing about my breast surgeon!). Incredible bedside manner, has done over 1000 breast reconstruction surgeries, and is truly an artist in every sense of the word. Whereas I would say I was 99.9% okay with everything after Monday’s appointment, I can confidently say I am now 100% confident going into this surgery. He took so much time to explain the entire surgery, recovery, and reconstruction – it was amazing. Also made my day when he said I didn’t have enough abdominal fat to do a flap surgery even if I wanted (ha! – if that’s not the way to a girl’s heart…) So as discussed on Monday, come August we’re looking at a 5-6 hour initial surgery with lovely (sarcasm) drains post op, then expanders/fills for 12 weeks, and finally the exchange surgery for permanent “gummy bear” implants (silicone that doesn’t leak and feels ridiculously “real”) – I thought it was cool that he actually weighs the breast tissue removed to get a baseline, then adds to it to determine implant size. He agrees with going a little bigger to fit my frame, and I really respected his argument of expanders versus immediate reconstruction in that he wants me to be involved in the decision-making on size, contour, etc. I was told on more than once occasion today that he’s a perfectionist, and let’s just say I am MORE than okay with this! He took a whole bunch of measurements, and I also had pictures taken – let’s just say I mastered the “super woman” pose! 🙂

So all in all, the plastic surgeon appointment went better than I could have ever anticipated – I know women that have had to “shop” for surgeons, and I feel so lucky that everything fell into place to end up with a literal dream team – these guys are so humble yet incredible and I honestly don’t feel like I could be in better hands. That feeling, let me tell you, is indescribable knowing the gravity of the situation. So with all our questions/concerns addressed, Mom and I headed to Breadwinners for lunch – yum! And then headed back for round 2!

So I had mixed feelings going into the GYN-onc appointment – I’ve fully come to terms with my mastectomy, but am in absolutely no position to consider an oopherectomy (removal of the ovaries) knowing I want to have kids, and wasn’t quite sure what direction this doctor would be going. Turns out, she completes the “trifecta of badassery” as I have dubbed my three docs! This doctor is down to earth, honest, up on the evidence, and completely personable – she spent over an hour and a half discussing everything, which was incredible. She didn’t shy away from the fact that the science is not awesome on detecting ovarian cancer… in fact it kind of sucks. However, she was very adamant that while risk-reducing surgery is inevitably in my future, she would not touch my ovaries until I was late 30s/early 40s – for this, I love her. And honestly, while the whole kid thing is MY focus, hers is her experiences with young women and surgical menopause. She explained the many options I have, and we came up with a plan that I feel great with – we will start surveillance now and play it by ear whether it will be every 6 months or every 12 months, and simply keep a close eye on everything. She was thrilled that I’ve already reduced my risk of ovarian cancer by 50% (!) by being on OCPs for 5 years continuously, and now we will add in more extensive exams (so much fun let me tell you… NOT!), transvaginal ultrasounds, and CA-125s (a simple blood test). I had the exam and CA-125 today, and will have my first screening ultrasound the same day as my MRI (again with the two for one special fun!)

That makes March 5th the next big day with these tests… and hopefully the last until July if everything comes back clean. July’s gonna be a fun month… seeing everyone (breast surgeon, plastic surgeon, gyn-ONC, neurosurgeon, and neuro-ophthalmologist) before the big day in August. I’ll be out of town the beginning of August so it’s full throttle before then… but I know I’ll be thankful for the distraction, and then I get back and 2 days later it’s surgery day!

I can’t reiterate enough that I have such a feeling of peace with all of this, and also that I’m mentally doing great, and my family too. I know I’ve said it before, but I can’t finish this without saying “thank you” to you all – I walked through the ICU yesterday and was literally showered in hugs. Having you all on my side gives me more strength than you will ever know. I know I have a lot of processing ahead of me in the next few months, but I really feel like I’m in a good place with my incredible family and friends helping me along the way. Dinner tonight with my best friend for the last decade that life kept us apart for a month was exactly what I needed – she didn’t know about the blog so I started from the beginning of this week (it’s been a big week!) and realized JUST how okay I am with all of this. I also had the chance to talk with an amazing person last night – she is one of FIVE sisters that are all BRCA1 positive and have had bilateral mastectomies… what a powerful story! She commented on how some days she totally forgets she even had the surgery… THAT is my goal for this time next year!

Anyhow, yeah… been a big week! But a good one. I’m relieved, empowered, and ready for all that’s to come… and I couldn’t ask for anything more. Will update again soon!

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?!

Sorry just can’t help myself with a good “Annie” reference! Musical theater nerd? Well yes I am thankyouverymuch.

Well tomorrow’s the big day and honestly, as asinine as it sounds, at this point I’m actually looking forward to it… the not knowing has outweighed the other thoughts and I feel like I’ve processed everything as much as I can. Time to get things going!

I would be lying if I didn’t admit to being in a bit of a funk today, but meh – multifactorial and I’m over it now. Thankful for a roommate that provides good distraction (mint green Steve Madden flats? Well don’t mind if I do!) and doesn’t question your “my allergies suck today” excuses. I thought I was was doing great till I ran into a friend at Central Market and got a good “are you okay? You just look like you’ve had a really rough day.” In her defense, no makeup and exhaustion will do that! Okay, okay, so being ridiculously out of shape and working out for the first time in a-period-of-time-I’m-too-ashamed-to-admit will result in said exhaustion… but regardless she had excellent advice to think about the end result and I walked away with an affirmative “I promise I’m okay!!” And I am. I really, really am. I’m ready.

Anyhow, I’ll keep this short… will update tomorrow, hopefully as a girl with a PLAN! If you know me in person you know how happy that statement makes me! 🙂 Thanks for all the good thoughts sent my way… you are all amazing!

Well it’s next to impossible to believe that this long-awaited appointment, the “call me when you’re 25” appointment if you will, will be over this time next week.  It seemed so far away, and then when I had to bump it back a couple weeks due to scheduling issues, even farther, and all the sudden it’s like bam! Here.  It’s been good to be able to process everything but I am definitely ready to get this show on the road come Monday.

So I’ve had a lot of people ask me how I got to the point of making a decision so big… prophylactic surgery big… so I thought I’d devote this post to my “stream of thoughts,” because it’s really rather more of a list of random categories and thoughts than a thorough explanation.

To start though, I must first share the quote that has most resonated with me in the last few months, as it succinctly yet eloquently describes my thoughts.  It’s from the book Previvors (Author: Dina Port… I can’t recommend it highly enough… so much so that I’ve kindly forced it upon those closest to me in this journey) from a BRCA positive woman regarding her prophylactic mastectomy:

“I was having skin-sparing surgery, so to me I was just removing cells and getting rid of my risk,” “Everything else remained intact. I viewed it as though my breasts were faulty, and I was getting them fixed. I didn’t think I was giving up anything. I was gaining peace of mind.”

Everything about that statement is just so very true and exactly how I feel.  So with that said, here comes the word vomit of my own…

It’s not “Radical”
It really drives me crazy when I heard this surgery referred to, mainly on the internet, as “radical.”  First of all, I don’t quite get how people can pass judgment on something so personal, but second of all, no one thinks twice about BRCA positive women removing their ovaries to decrease the risk of ovarian cancer, so how is this any different?!  As an ICU nurse I’ve witnessed first hand surgeries you couldn’t deny as “radical,” and let me assure you, this is not one of them.  Especially when you consider that doing it prophylactically allows you to do it with a skin-sparing, nipple-sparing, lymph-node sparing option (which I fully intend to embrace).  Perhaps my explanation of “scooping them out and replacing them” is a bit crude, but really?!  That’s the essence.

The other option: Surveillance
So the whole “call me when you’re 25” line stems from the national guidelines that suggest initiating aggressive screening measures for BRCA positive individuals starting at the age of 25.  Which doesn’t sound so bad, I get that, until you really start considering what that involves.  It means SOME sort of test, whether it be a mammogram, MRI, or ultrasound, every 6 months. SIX months!  Do you know how fast six months flies by??  Knowing myself, I really feel like I would be all-consumed by screening and the accompanying “scanxiety”.  You’re always looking for something wrong and wondering “is this the time they’ll find something?”  The stress of driving out there, having the test, waiting for results… over and over? Nope, thanks, not interested.  Besides the fact that research came out earlier this year advising against mammograms in people my age because the radiation exposure increases cancer risk even more!  Because the irony in that is not incredible right?!  Also there’s the lovely tidbit of info that the screening for ovarian cancer is just not that advanced.  It will be more than plenty to have every 6 month ultrasounds looking for ovarian cancer without all the breast cancer screening.  I’m already not thrilled about that but as it’s the only option at this point for me (kind of want those kid things you know?), I’ve come to accept that.  But add breast screening onto that?!  No thank you!

I can certainly see how some people are okay with the surveillance option, but I know me, and I’m just not one of them.  Hearing the horror stories of people who did everything exactly as they were told and then STILL finding out they have relatively advanced cancer is overwhelming.  I am much more of the “let’s get this over and done with… I’ve got my life to live!” mentality.

Another facet to this is the “okay they found something” scenario, which is not at all unlikely given the fact that young women often have dense breast tissue.  Okay so there’s something suspicious on whatever test that’s done… that leads to more tests, which more than likely leads to a biopsy.  Sure it could easily come back benign, but how many times does this happen until you say “enough is enough?”  I won’t lie and say that the cosmetic result of this surgery is not important to me, because it is (it REALLY is) as I’m sure it would be to every 25 year old.  I am not willing to risk my cosmetic result by having biopsy after biopsy… I want to give it the best chance possible to look as normal as possible, and do it all at once before anything happens.

And while we’re at it… this is not just ME affected every 6 months.  Obviously I’m the one doing the actual testing, but to think of putting my poor family and friends through that stress as well?!  Both the “is this the time she has a tumor?” fears and the dealing with MY stress… well there’s wine and girls nights for the latter but… (just kidding!)  Seriously it’s horrible to even think about that… I owe it to myself and to everyone around me to do everything I can to not fall into that 87% statistic.

Edited to add this powerful link: while not entirely applicable to me, this woman describes the surveillance process, and all the stress that goes into it, so incredibly well – I figure another perspective helps explain why surveillance is not for me.

Timing
I’ve had some people ask “why now?” which is a totally valid question… many people could see doing this is in 10, even 20 years, and for whatever reason some think its different then.  Well, for me, I can’t think of a better time.  I’m young, relatively healthy, and in a place where I will be able to have time to recover while surrounded by an incredible support system.  And really, when is going to be a BETTER time than right now, single but with so much support?  So I find the man of my dreams and want to get married… nope, not gonna happen then.  And of course then we want to have kids.  Nope, not gonna happen then.  And then the kids are young… I don’t want to miss out on their lives, and I certainly don’t want this impacting more people than it already is! I can be selfish in my recovery and make sure I’m doing this for ME by doing it now.  I will touch on the note of breastfeeding here, as that is the one big thing this surgery affects.  Obviously without breast tissue breastfeeding can’t happen, and honestly that was not an easy thought to accept, as I’ve always pictured myself in the mom role eventually and it seemed to naturally tie into that.  However, I am willing to give up that experience in order to increase my chances of being able to be there for my kids for a VERY long time.  Yes, I imagine it will be beyond difficult once the time comes, but really if that’s the hugest negative to this surgery (and really it is), then I’m okay with it.

On another timing note, I can’t imagine having to make such a huge decision right after being diagnosed with breast cancer… now I have time to think everything through and know I’m making the right decision without the imminent threat of cancer spreading.  I would MUCH rather have this surgery when I am in the best health possible instead of after chemo, etc.  Also, I want to have it on MY time table – when I can plan to be off work, when I can have all my ducks in a row, when I can tell people “here’s the date.”  I would hate to be rushed trying to get ready for something like this, and with my luck I’m sure it would be at the most inopportune time.

Medical Advances… And Fate/Karma/Luck/Whatever you choose to call it
While this gene mutation is no walk in the park, I am so very grateful that medicine is advanced enough to have identified the gene, and I am so glad I know I have it so I can do something about it.  What can I say? I’m a “do-er.”  There are so many horrible diseases out there that you can’t do a single thing about.  If I am lucky enough to find out I have this high risk, I feel like that’s my chance (and while it’s a strong word, obligation) to do something about it.  And call me crazy, but I feel like if I have the option and I don’t take it, I’m really just asking for something to happen.  And I say this entirely un-dramatically, despite how it sounds, but if you know me and my family, we have generally not-awesome luck.  The saying “if something can happen, it will” has followed me all of my life.  This is not to say I think I WILL get cancer at some point in my life, but to say that damnit I’m going to do everything in my power to make sure I DON’T.

The case of Femininity
I guess this blog can’t be complete without touching on the old “but breasts define you as a woman” adage… but I’ll keep it short.  I’ve never really quite understood the concept of a body part defining one’s femininity but I digress.  I don’t know how to put this eloquently exactly, but it’s really difficult to describe how your mentality changes when you feel like your own body could betray you.  No body part could ever define who I am as a person, and I really don’t feel like I’m losing any part of me, or that I will be any less of a woman.  End of story.

Reconstruction Options… Like WHOA
Adding to my “scooping them out” explanation and the quote above… with the ability to do skin and nipple-sparing surgery, yes there are incisions and what have you, but really I don’t feel like I’m going to come out feeling like I’ve lost anything.  Will it be weird? Yes. Will it take getting used to? Of course.  But I fully believe that the empowerment and relief it will bring will make it all worth it.  And let me tell you… in the Previvors book they talk about when they first saw another woman’s reconstruction firsthand and how much it helps.  I can’t reiterate the truth in this… let’s just say there’s some seriously real feeling implants out there!  But I’ll save that fun for another day… the reconstruction options are actually my biggest questions going into this appointment.

That seems like an appropriate place to stop… kudos if you made it this far, but in all honestly I am so glad to have this all written out once and for all for ME after explaining it so many different ways.  And I imagine there will be a day or two in the future during the inevitable “freakout” moments where I will need my own explanations!

More to come soon–

Wow! Hard to believe it’s been a week since I’ve made this thing public… and to be totally honest, it’s taken me this long to process the massive outpouring of support I’ve received. Like WOW I knew you were all amazing, but to see it written in your comments, to watch the blog hits rise, and to feel the love as so many of you reached out to me literally left me speechless. As you can imagine it wasn’t easy, but I definitely feel like I made the right decision to start this blog and am so glad to have so many wonderful people behind me.

So this time in two weeks I imagine I’ll be a lovely bundle of nerves awaiting the big breast surgeon appointment, but for now I shall enjoy my bliss… I just got back from a wonderful weekend getaway to Fredericksburg (down in the Hill Country for you non-Texans!) with one of my best friends. A nice long drive allowed for much talking about many topics, but “the new boobs” for sure – having fellow “medical” friends who see things from a similar perspective is something I will never take for granted! We traveled down Wine Road 290 and gathered some lovely drinkable souvenirs along the way. It was perfectly relaxing and downright fun – a fabulous way to end the birthday festivities!

I figured until I have actual “news” to report, I’d start with some basics… and what better to start with than the title of my blog. So what exactly IS a previvor anyway? I think it’s a pretty nifty term with a cool story. From the FORCE website…

“Cancer previvors” are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The cancer previvor term evolved from a challenge on the FORCE main message board by Jordan, a website regular, who posted, “I need a label!” As a result, the term cancer previvor was chosen to identify those living with risk. The term specifically applies to the portion of our community which has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.

The medical community uses the term “unaffected carrier” to describe those who have not had cancer but have a BRCA or other cancer-predisposing mutation. The term applies from a medical perspective, but doesn’t capture the experience of those who face an increased risk for cancer and the need to make medical management decisions. Although cancer previvors face some of the same fears as cancer survivors, undergoing similar tests and confronting similar medical management issues, they face a unique set of emotional, medical, and privacy concerns.”

I just love that… “I need a label!” It’s so true. No I haven’t had cancer, and no I don’t want to take away anything from those that have – they are their own particular breed with their own stories that deserve so much respect. But I DO have something that deserves recognition, both from those in the medical field and those not, and previvor is certainly way more fun than “unaffected carrier” if I do say so myself! So that’s my “label,” per se, going into all of this – not to be defined by it, but to help redefine it myself… by “Previving and Thriving.” It’s amazing how it’s become commonplace – anyone who knows anything about BRCA mutations seems to know the term! It takes the mystery out of “well… I never had cancer… but… I’m not at ‘normal’ risk either…”

Anyhow, certainly not my most exciting post ever, but one that deserves writing anyway! Up next… the most common question I’ve been asked… how did I come to this decision of prophylactic surgery versus other options. Stay tuned – and have a fabulous week!