Contemplating PBMX without Recon

geekyknitter · February 2014

I'm waiting on my BRCA test results and my biopsy results, so it could be that I'm thinking about all this for no good reason at all. That being said, I'm 36 years old with two awesome kids and a pretty horrible family history of breast and ovarian cancer and my doctor asked me to take this time to think about all the options for prevention, given that she believes me to be high risk even without a positive BRCA.

After thinking about it and looking at the options out there, I'm leaning more towards prophylactic bilateral mastectomy if my BRCA results do come back positive. I find the screening process stressful and I remember all too well what other women in my family went through and I'm young and in good health, so if I were to undergo major surgery, now seems like a good time. I've also finished having children, so that's less of an issue. However, I don't really like the idea of "fake" breasts. I understand that there are many options out there that can yield some pretty good cosmetic results, but I also know that they'd each lack feeling and require more surgery and recovery time as well as more risks of side effects. I'm pretty physically active and would like to stay that way and I'd really like to minimize my recovery time and get back out there doing the things I love.

I worry that others will think I'm crazy for not wanting some sort of reconstruction. It seems like it's just assumed that you will and it almost seems to make other people feel more comfortable if you do. The way I see it, my breasts have always kind of gotten in my way when I've been active in the outdoors, but I've worked around them. I can't see wanting to work around breasts that have no feeling and aren't really "me." I could always wear prosthetics at work or whenever it would be socially better and go flat when I'm out hiking, mountain biking, skiing, and everything else I love to do. To me, the idea of being flat feels "freeing." I'd be free of a lot of my risk as well as free of the nuisances of my large breasts.

Or, am I just only looking at the bright side of all this and missing all the potential downsides of going flat? I'm lucky in that I have as much time as I want to think about all this and might not even have to go through with it, so if there are serious downsides, I'd definitely like to consider them.

crystalphm · February 2014

I am flat, by choice, but older than you (55). *if* your test comes back positive, don't forget the option of mastectomy, trying out flat and reconsidering if you don't care for it.

It sounds to me like your are thinking very practical...and it is good that you are exploring these things. being flat, the downside is :looking in a mirror, noticing every other woman has cleavage and I don't, having my sister wear lower cut tops since my cancer, not feeling *enough*....but seriously I can't see any other downsides... the reality is cancer took a good part of me away, now I can't wallow or feel badly about myself, I have got to *live* the years I am given!

Jennie93 · February 2014

Honestly I can't think of any downside of being flat, but then I never had any cleavage anyway. My only regret is that I wasn't offered the option to have both of them off. Not denigrating anyone else's choice, but for me personally I can't imagine any reason why anybody would choose to have a hunk of silicone implanted into my body when I could just stick it in my bra, and take it off whenever it gets uncomfortable!

Read the thread in the reconstruction section titled something like "athletes who choose implants may regret it", very eye-opening. And remember, even if they don't leave extra skin, you can always choose recon later, even years later.

suzy123 · February 2014

I just had a bilateral mastectomy (January 31st) and opted for no immediate reconstruction. I don't want implants and three weeks ago everything was such a roller coaster ( diagnosed two weeks earlier, having the operation, etc etc), that I didn't want to think further than that. I did go to a PS, but that was mainly because my oncologist wanted me to go, he was afraid I might regret it if I was told later on that things were not possible anymore because of decisions I should have made before the mastectomy.

I still haven't decided what to do. I don't want implants, and the other operations (like DIEP) seem very invasive. I think I will go and have another talk with the PS in a few months. The results of the mastectomy need to be looked at anyway and by that time I will have had more opportunity to look into reconstruction. But the way I look at it now, I probably won't do it. I am also older than you ( almost 53), but I don't think age makes a lot of difference. If you feel fine without breasts, then stay flat. If it makes you unhappy to be flat, go for reconstruction. But either way, in my opinion the decision is yours and yours only.

geekyknitter · February 2014

It really has been interesting thinking all this through and I really like hearing everyone's different perspectives on it.

It seems like we are expected to want to keep our breasts and some women do and I am very thankful that they are supported in doing so. For me, this process has made me think about what makes me a woman. If I do test positive, I'll likely have a PBMX and some sort of oopherectomy or hysterectomy to reduce my risk, essentially removing every female sex organ I have, except for a few lingering bits. Yet, I still feel like I'll be just as much a woman as before. I'll go through surgical menopause, but women go through natural menopause and are no less women. We are so much more than the sum of our parts.

So, if it isn't my breasts, or ovaries, or estrogen that makes me a woman...what does?

I'm not a "girly girl" and I never have been. I've always been low maintenance, only wearing makeup for special occasions and avoiding shoes that hurt my feet and anything pink or frilly. But, I still see myself as a sensual, feminine woman. I'm a woman if I'm out hiking or mountain biking just as much as when I'm knitting or baking. It's in my genes and it's part of how I see the world and none of that has much to do with particular body parts. It took me a LONG time to feel comfortable in my curves and I expect that it would be a transition to get used to being without some of them, but I see it more as just a continuation of me changing and evolving into the woman I will eventually be.

I'd rather feel my husband's heart beating next to mine than have something in between us that I can't feel. I'd rather hold my children close to my heart than have that separation. I'd rather have a quick recovery than have to go through several surgeries and all the waiting and nervousness before each one. Of course, all that could change if this becomes more than theoretical and I'm talking to surgeons. Part of it could be that I've only just now started to accept my breasts again after being more than a bit angry at them for putting me through so much testing and a biopsy recently.

The biggest thing, though, that I'm grateful for is places like this that show me that no matter which route I go, it can be ok. I'm inspired by women who have made the choice to go flat and found beauty in it as well as the women on the other side of their reconstruction surgeries who are happy with their choice. It's good to see there are options and that many women can be very happy with whichever one they choose.

jsjherman · February 2014

Geekyknitter~ how is it that you seem to know exactly how I feel? I too am not a "frilly girl". I have been trying to figure out whether to have the recon or not, but you are on to something... I have always said that my lady parts don't define me it is the heart, mind and soul that do that. My amazing husband has said as long as we can continue to grow old together he doesn't care what my chest looks like. I think maybe it is all in the mindset? It was only in the past few days that I even truly considered not having the recon done. I think I have been shell shocked, angry and not to the point mentally where I could explore that option. I think I have finally gotten to the grief stage of acceptance and truly have no problem having the pbmx and hyst. I am 44 years old and have dodged a bullet so far. Our son graduates high school this year and I really don't want to spend the next 30-40 years with the fear of is it cancer this time hanging over my head. I think you are brave and strong and will be a powerful testimony to others who have walked our journey.

SpecialK · February 2014

geekyknitter - I fully support you in whatever choice you make regarding surgery and/or reconstruction or not, but want to caution you on thinking that either PBMX and or hyst/ooph are surgeries that are always one and done. You can end up with subsequent surgery after BMX for infection, seroma, lack of incision healing, necrosis, etc. You can also have issues with lymphedema, particularly breast and truncal, after any breast surgery, even if lymph nodes are left intact. Some suffer from post-mastectomy pain syndrome whether they reconstruct or not. A hyst/ooph at a younger age can cause osteopenia/osteoporosis and an increase in cholesterol, and this can have a long-term impact requiring daily medication, and changes in lifestyle. Also, prolapse and shifting of internal organs after hyst/ooph is a very real issue and worthy of a full discussion with your docs. Surgical menopause at the age of 36 can cause sexual dysfunction, and other side effects that have a profound effect on your daily life. Please be sure to discuss this fully as well. I am not trying to dissuade you in any way, just trying to present a realistic picture of these two major surgeries so that you can make decisions in a fully informed fashion.

jsjherman · February 2014

I guess another issue I have trouble with is that I just have recovered from having my back fused with 2 rods, 8 screws and 3 bone cages from S1-L3 in November 2012. That in itself was traumatic and I felt "broken" for a lot of months. I still feel that way on occasion, but have come to realize that I may be "all screwed up" (LOL) but I am still me. I am still who I am in my heart and mind and this really isn't so different. If I choose to let this define me, if I choose to let it change me, then it will. I am just not sure I am up to all of the extra surgery that I am finding out goes with the recon .I love that I can be proactive and not reactive and that I can win before the true battle ever begins. I am so lucky to be blessed with a loving and supportive husband who has stood by me through all of the insanity of back injuries and surgeries and has now taken my hand and held it tight as we jumped onto this roller coaster. I just keep telling him that not only am I all screwed up now, I have finally been diagnosed one rung short of a full ladder. I have found that the humor does help... that and him finding this message board and website for me. I have found so much support and understanding this past week. It has helped to clarify things and make them easier to swallow. I just pray that I have not passed the BRCA1 mutation on to my son and that it will end with me.

geekyknitter · February 2014

My mother had a hysterectomy at age 27 and most of the women in my family went through mastectomies, back when "radical mastectomy" was the norm.

I understand prophylactic surgery has its own risks and it isn't for everyone.

Contemplating PBMX without Recon

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