To Reconstruct or Not?


To offset all the fears I have about testing positive for our family’s BRCA mutation, I have been trying to imagine that I already am positive and think about the choices I would have.  For someone like me, who likes to plan things out, this really does bring me comfort.

One of the things I have been thinking about it prophylactic breast mastectomy (PBM).  I’ll skip the discussion today on the “controversy” over that option.  Instead, I’ll just jump ahead to post-PBM: to reconstruct or not?  In fact, this post was inspired by a similar question on the BreastFree Blog.

The moment I heard about BRCA and looked up the support websites — Be Bright PinkFORCEBRCA Umbrella — I saw the forums were full of discussions on reconstruction.  In fact, it seems the majority of the discussions among the young women with BRCA is what type of recon to do, handling the recovery, documenting the progress, getting support during the complications, etc.  I wasn’t even thinking about this issue when I first went to the websites.  I was (and still am) more concerned about technical issues like the exact risk we face, what is the progress of brca research, when do we need to start screening and considering preventive surgeries.  Of course, I was also looking for some sharing of feelings and stories that I could relate to.  Instead, I ended up reading a lot about people’s personal experiences with recon.  And in the process, I realized not only am I not that interested in it, I don’t think I have any desire anymore to consider reconstruction.  Before going on, let me just throw out a disclaimer that what follows are my feelings and I completely respect anyone who feels differently.

First off, I found out that recon is a very involved process.  It’s weeks of healing and months of constant changes.  And depending on the method, it may involve more than one surgery and/or clinical procedure (e.g. expansion sessions).  Second, I had no idea that many of the recon procedures involve cutting/using nearby muscles!  I have a lot of trouble wrapping my mind around that.  I naturally don’t want to cut off my breasts, but if the risks are high enough I certainly will do it.  It’s a loss to me, but at least it’s not a loss that affects my everyday functioning.  But muscles?  I can’t even hold on to a pull-up bar as it is, I feel I need to keep every bit of muscle I possibly can.

What are the functions of breasts anyways?  Breastfeeding is the most important function I can think of for breasts.  But since I haven’t planned on having kids, this doesn’t affect me much.  Sexuality and breasts is pretty minor for me (there is a lot more funner things I can think of to play with).  Filling out women’s clothes is useful, especially now that I actually wear women’s clothes instead of the oversized men’s shirts I used to wear.  Actually, the one other function I just learned of and seem to always forget is its hormonal role.  I am not too clear how important breasts are in contributing hormones to our system, but this has made me realize that breasts are not just decorative.

So how does reconstruction fare for replacing what was taken out?  Well, it clearly won’t help with breastfeeding.  No need to mention hormone production.  And reports on sexual sensation seem to indicate that recon cannot do much there either.   So it’s really just about appearance — whether that be for one’s own sense of self or others.

I initially thought if there was a recon procedure that could result in breasts similar to what I already have, I would consider it.  My breasts are 34B or maybe a little smaller.  I have always been satisfied with their size and appearance.  I would dread having anything larger than what I have now.  But finding a 34B recon job seems impossible.  Most people that size seem to opt for an “upgrade” (or maybe their surgeon did?).  Not only that, but the better results I saw looked just too perfectly round, too perky, and too large.  In short, they looked like breasts from porn magazines (to be fair, most were implant surgeries so they naturally look more similar to breast augmentation surgeries). I know that is the ideal for a lot of people, but for me it just seems laughable.  My breasts have never looked like that and I have never wanted them to be like that.  In fact, I couldn’t help but feel the breast recons I saw were what men thought an ideal breast should look like.

Maybe it’s worth mentioning at this point that I am a lesbian.  I didn’t think initially that this point would having any bearing on this decision.  But more and more, I feel it does influence my feelings about recon.  Perhaps one aspect is that I have a much different notion of what an attractive and beautiful breast is.  Or maybe it’s not about lesbianism, it’s just being out of date with the current fashion trends?  It seems that rise in breast augmentation has changed the ideals of beauty and breasts in this society. And I seem to be stuck on “good ‘ole days” before I was even born.

Not only is the appearance of recon not satisfactory for me, but I also found out that not everyone is suitable for all methods of recon.  A smaller person like me is often only eligible for implants.  Implants also means long-term maintenance.  There can be a risk of implant rejection or leaking.  There’s a good chance of having to do another surgery after a few decades.  And something else that I never thought of: discomfort of a foreign body.  Someone with implants on the boards mentioned that it’s uncomfortable for her to lie on her stomach.  Seems like an obvious side-effect, but I never thought about it before.  Made me realize that I never fully consider the aspect of texture and its lack of naturalness.

By the time it’s all said and done, I can’t hardly come up with one good reason to get reconstruction for myself.  I thought surely I am not be the only one?  Well, honestly, it does seem I am in the minority.  But thankfully, some one on the support forums gave me a link to BreastFree. It’s a website of women sharing their stories on not choosing reconstruction.  When I read them, my feelings became so much clearer.  I finally found a group who I could really relate to.

Not only that, but when I saw the picture of a bilateral mastectomy without recon, I was struck by how beautiful it was.  My fear about going without recon has been the scars and disfigurement of the human form.  Will the scars heal well?  Will the chest area be smooth?  What will the final shape be? What struck me with the pictures what that there was nothing unnatural about it in my eyes.  It was still a human form, just a more simplier version.

Seeing the photos, I couldn’t help but feel that I would be proud to have that body.  The shape reminds me of a athelete and good health.  (It also reminds me of all those cute, sexy tomboy girls that I have crushed over.)  Looking down at my chest, I could imagine feeling not a sense of loss, but a sense of empowerment that I took control of my health.

So the support boards, in the end, did help me some.  Although I still feel frustrated at the overwhelming focus on reconstruction, it did help me realize that confronting the stark reality of complete mastectomy is not that so frightening.  Of course, I have a lot more processing to do on these matters.  Even now, I still have some more comments on this issue.  But it’s getting far too late and this post is already plenty long, so I’ll save it for next time.


4 Responses to “To Reconstruct or Not?”

  1. 1 Janine

    I kind of wish I wasn’t having reconstruction because I would have been done with the bm by now and recovered. But somewhere along the line I fell in love with my boobs so am opting for the diep and holding out hope that I will have some feeling and like them almost as much as my old ones. Good luck with your journey.

  2. 2 alyssum

    Thanks for sharing! I really hope my post didn’t come off as being offensive to those who choose reconstruction. I know it’s a very personal decision and touches on sensitive feelings. And frankly, none of the choices that BRCA carriers face are easy. It’s always some sort of compromise. But I hope you turn out to be pleasantly surprised by your decision and wish you a speedy recovery from your recon!

  3. 3 Janine

    No offense taken. We all have to find our own way through all of this and make the choices that we think we can live with. If you haven’t read it yet you should check out My One Night Stand With Cancer by Tania Katan.

  1. 1 Supporting One Another « BrCa

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