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.
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–