Thursday, December 24, 2009

Have Yourself a Very Mammary Christmas

'Twas the day before Christmas, and I'm stuck in bed, while pain-killer induced visions dance in my head.

It's been nearly a week since my surgery, but the days have simply melted into one another. I've left the house only once since I got back from the hospital on Sunday (and then only to see my doctor), and I've been sleeping a lot. The first few days back from the hospital were easier, for whatever reason, than the last few: when I last updated this blog, I was imagining going for walks, to the movies, out to dinner; now all of that makes me panic. I've been rather nauseous lately, and I haven't had much of an appetite, so dinners are out. And the painkillers--though a gift from baby Jebus himself--have made me dull-witted (I'm really struggling to compose this, as the words that normally come so easily seem so far out of reach right now), irritable, and unable to concentrate. I need them, of course, because I am in pain: I feel like I have two bowling balls stapled to my chest. But they are making me feel less and less like myself.

Well, in the spirit of Christmas, how about a little gift? The gift of all the gory details about my surgery. Since many of you have asked what exactly I had done, here is a little medical lesson. Think of it as everything you wanted to know about my surgery but were afraid to ask (and maybe even some stuff you didn't want to know). So what exactly did I voluntarily subject myself to last Friday? The technical term is a one-step direct-to-implant skin-sparring nipple-sparing prophylactic bilateral mastectomy. In English, that means that I had both breasts removed as a preventative measure; the doctors scooped out everything inside, but I kept my own nipples (this is an option that many women in my position decide against: the research indicates that keeping nipples--which are, of course, breast tissue--does not significantly increase risk of developing cancer there and improves both aesthetic and psychological outcomes, but many women figure if they are going this far, they might as well go all the way. I chose to keep mine because I knew it would help me greatly to be able to look down at my new breasts and recognize them as still my own. And it has. I don't really feel like I've had my breasts removed at all. It's like I had them replaced; different stuffing, same envelope. And furthermore, if, by some freak occurrence cancer did manifest in my nipples (it is still possible to get breast cancer, even if you have next to no breast tissue), it would be easily detected.). During the mastectomy, the breast surgeon tested the tissue he extracted for any abnormalities; it was possible that I could have had cancerous growths developing in my breasts unbeknownst to me, and, in such a case, I would have awoken without the nipples I had hoped to keep (especially if the tumor was near the nipple). Luckily, the tissue was clear and I got to keep my nipples. (And further tests on the tissue by the pathology lab revealed that indeed, I was completely cancer free. I got the all clear! I dodged the bullet completely. I am a true previvor.)

Once the breast surgeon was through with his portion of the surgery (which, I understand, in my case lasted about an hour), the plastic surgeon began reconstructing my breasts. Easy go, easy come, right? I have to admit that there is no way I would have ever considered this preventative surgery if not for the option of reconstruction. When my grandmother had breast cancer in the 1980s, she had a radical mastectomy, and back then, they took it all: tissue, muscle, skin, nipple. She was left concave, maimed, deformed. And when I first heard that a treatment option for women with the BRCA mutation was a double mastectomy, I recoiled at the idea of looking like my grandmother. Well, and forgive the cliche, but I'm too addled by painkillers to come up with anything more creative: this isn't your grandmother's mastectomy. In fact, when it's all said and done, I'll have more in common with, say, Pamela Anderson than my grandmother. In a society that values overinflated, unnatural bosoms, I'll have exactly what we deem attractive and youthful.

There are, I think, about two dozen different reconstruction options available today, but for ease of discussion, it is useful to think of them falling into two categories: tissue transplants or breast implants. For the former, your own body tissue, from your stomach, back, or ass, is transferred and reconfigured into breasts (this is great if you husband is an ass man, because now he'll have tits made of ass. Budump-ching! I'll be here all week. Don't forget to tip your waiters.). This surgery has both pros (it's permanent, it's you, it looks more natural) and cons (it's extremely painful and the recovery time is significantly longer), but I decided early on it wasn't right for me. The truth is, I'll need to have a revision at some point down the line (implants don't last forever) and I might consider it then; but for now, tissue transfer was just way too scary. So I chose to get implants. It's still strange to type those words since I never in my life thought I'd ever be in the market for breast implants. But this is a little different than cosmetic surgery, and a little more is at stake, so I'm cool with it (though it took me a while to accept). There are two options when it comes to implant surgery, as well: one-step or two-step. The latter is the more traditional approach: after the breast tissue is removed, an inflatable tissue expander is placed beneath the chest muscle; after surgery, a women wakes up with about an A cup. Over the course of weeks and months, that expander is gradually filled with saline, stretching the muscle so as to accommodate a permanent implant. Not to offend the many women who have chosen this method, but it sounds like pure torture to me, not to mention frustratingly slow (the whole reconstruction process takes months), and I was sure there had to be a better way. There was, luckily, and that's what I chose: the one-step procedure allows for immediate implant placement. During surgery, the pectoral muscle is cut and a pocket is created with Alloderm (which I wrote about here); the implant in placed behind the muscle and in the pocket and the reconstruction is complete. Because I chose this type of surgery, I woke up with breasts, misshapen and square though they might be, and I am so glad, from an emotional level, that I decided to go with this reconstruction; it's been a lot easier dealing with all of the emotions and questions and doubts that arise after (yes, after) surgery because I really don't feel all that different. I look pretty much the same as I always have and my breasts still seem like my own, even if, in reality, they are gone.

So, what am I to expect as I recover? As the muscle loosens and my implants settle, my square boobs will become more round. The incisions are under my breasts, so once my new boobs fall into place, you won't even be able to see the scars. So sometime pretty soon, I'll look like nothing really happened at all. And that's exactly what I want. On the downside, I have almost no skin sensation (although I still have more than I expected. I can feel my sternum and around the base of my breasts) and no nipple sensation at all. And this is unlikely to change. The nerves have been cut and damaged, and it's pretty much a dead zone across my chest. But all of that is a small price to pay for the peace of mind I gain, the certainty that I've beat the odds, no matter the extraordinary measures I had to go to do so.

My family is visiting through Sunday (they arrived the night before the surgery) and they keep asking if there is anything else I want for Christmas. But, I tell them, I already got everything I wanted: I made it through surgery and my pathology report came back clean. I couldn't ask for anything more.

Merry Christmas to all!


  1. OMG, where did you find that picture!?! (I'm not getting the notifications anymore. Must check why.

    2nd paragraph - I totally understand. Ditto for me back then!! Call or email anytime!

    I'm so glad all your biopsies came back clean!

    Yes, expanders were torture for me! I've always assumed, but never asked...with one-step implants do the pec muscles still stretch? If so, is that part painful?

    Even in your pain and drug induced stupor, you're still writing beautifully and your excellent humor is still coming thru.

    Have a wonderful and peaceful Christmas! (I still think you deserve more for xmas though than the good path report. Let people splurge :) )

  2. Here's to you for making it over the rainbow. For me the anticipation was far worse than the surgery! We met at the Bright Pink Tea & I was just about to have my surgery & freaking out a little :) I know your blog is helping a lot of women out there including myself- still in the process of healing- so thank you for writing. I don't know if you have the pillow from back & belly - it really helped me get comfortable sleeping after my surgery & I still can't sleep without it! Hope you are doing well- every week gets a little better. Sara

  3. STEPH H - Im with you all the way. Everything you have said. I am about to do the exact same procedure you did. My insurance company has denied our claim... all the way to a second appeal. So we are having to pay ourselves. I have the BRAC1 gene, mother died at 37 plus 2 aunt survivors of BC.

    I would loooove to know the cost of your full procedure?? I am going to have it done in Miami FL. I am ready to go. Found the Dr's.... booking a date..... just a little skeptical on the quoted price. I am doing exactly what you did....

    Thanks. Jessica

  4. I know this thread is at least 5 years old but would love to hear how you are doing NOW. My daughter, 26, BRCA1 +, is considering Direct to Implant and we are in Florida so looking at doctors in Miami right now. Would love to connect with you! LOVED reading your story- thank you for the smiles and hope you are doing well:)) Please contact me at: Thank you!!

  5. I know this thread is at least 5 years old but would love to hear how you are doing NOW. My daughter, 26, BRCA1 +, is considering Direct to Implant and we are in Florida so looking at doctors in Miami right now. Would love to connect with you! LOVED reading your story- thank you for the smiles and hope you are doing well:)) Please contact me at: Thank you!!