Choosing nonreconstruction on the BCO web site?

Linda, very good point that it does not have to be an immediate descision. When I was in hosp an Irish Cancer Society volunteer came to visit. She had chosen to get recon 19 years after her surgery.

I too would like to see the "issue"  prominent in the general info on the site.

2 days ago I decided to wear a pretty, flowery, close fitting top. I am UMX, so asymmetrical. I would also add that I am an artist, by profession graphic designer, and very visually oriented, and yes I like symmetry. However my body is now not symmetrical, and I would like to wear pretty clothes. Up to now I have worn big shirts and tracksuits. Possibly 'cos we got a bit of decent weather after a very cold, sunless spring I just put on something I would have worn before mastectomy. The first person to call to my door told me how pretty I looked. As I am going back to full time education shortly this was something I wanted to do before going to college, as I want to know for sure that I am comfortable doing it before I meet a new crowd of classmates.

I too would like to see it acknowledged in the general info that not only do plenty of women choose not to undergo recon, but also that while many choose prosthesis, equally many choose not, or only choose it sometimes.

Good thread!

LOVE LOVE LOVE this thread and the points it raises.  Because symmetry is paramount to me, I insisted on BMX once the decision for MX had been made (many many factors but avoiding radiation top of the list).  I chose no recon and no prostheses thinking I would be alone in the world on this one, but in the back of my mind knowing I could fall back on forms.  Then the center dog ears made that impossible.  It was flat period until further surgery which brings me to something I find critical.  Looking around the last year or two, there is a concerted effort in the professional and related fields, to push for reconstruction, to stop MX as much as possible and push for LX with radiation.  There is even more gnashing of teeth over contralateral proph MX.  I have the very deepest respect and regard for those whose motto is "Symmetry is overrated".  I am not that girl. For me to live happily and with optimism, I personally need symmetry.  We are all individuals, and there is no one size fits all that will ever work.  Contralateral proph MX was a critical option for me. WHRCA provides for surgery on the contralateral side for symmetry.  In my mind there should be no difference whether that means recon with contralateral adjustment or MX and contralateral proph MX with no recon to achieve symmetry. I am frankly alarmed by the push I see to stop or limit our choices.  We hear doctors and others say to patients who choose no recon, Do you want to be mutilated?  What does it say to that woman if A, she chooses no reconstruction, B, medical reasons prevent reconstruction, C, she reconstructs but then for whatever reasons ends up deconstructing?  That the professional world thinks she is ugly or unworthy?  How dare they even entertain that thought.  By the way, the same doctors who were so bloody gung ho to get her into reconstruction, are often too ready to shove her out the door without a second thought when it all goes horribly wrong and they have no more surgical fixes. They have so poisoned the waters that I do not know how they expect women to pick themselves up from that?  Especially when they just toss them out the door with no support, no nothing.  I REFUSE to consider myself mutilated.  I AM NOT MUTILATED!! I didn't choose no recon because I didn't care any more or that I had given up.  I chose it because I do care, I have certainly not given up and I respect and love my body as it is.  I am STILL an attractive woman, as much a woman as I have ever been.  And surprise surprise, that thought is shared by my friends, family and co-workers.  I am at the point where I could just about punch someone's lights out who dares to call one of my sisters in scars "mutilated."  NOT HAVING IT!!!  Many on the Rant thread and now part of the FB Flat & Fabulous group are determined to make no reconstruction and flat, not better than, but certainly equal to all of the other available options.  That this option will be normal with no apologies.  We are vibrant strong amazing women and it is about time we were recognized as such.  We are so much more than a throw away afterthought at the end of a sentence.

Barbara

Mods,

Thank you for your responsiveness. I think your original list is excellent and there have been many great additional suggestions. I couldn't agree more with Tina's point that choosing not to reconstruct is a positive, healthy, life-affirming decision. And I certainly second Starak's (Barbara's) point that I have never felt mutilated, disfigured, less womanly, or any of the other pejorative terms some people apply to women who have not had reconstruction. I think doctors sometimes pressure women by assuming they will feel this way about themselves, so your idea of addressing this pressure from physicians (and others) is a good one. Despite not feeling that a mastectomy would be disfiguring, I did want the best cosmetic result possible, so your intention to include discussion of dog ears, etc., is also a good one.

I particularly like the comment of alexandria58: don't forget that there are many ways that women choose to live after not having recon.  Completely flat - 24/7 - which is me.  Occasional foobs - for work or special occasions.  Foobs for work and outside the house.  And some choose to wear foobs even at home.

I think it would be great if these options could be described in a balanced way in your informational section (maybe with a definition of terms--breast forms, prostheses, foobs). Beyond that, I think it would be an excellent idea to provide a link in that section directly to this "Living Without Reconstruction" forum, since some women might not immediately find it otherwise. Here on the forum, women can ask further questions and engage in spirited discussion.

Wow, I love this group of women! I also agree with what is being said here - don't feel mutilated, it was my choice. I chose BMX when I could have had lumpectomy and radiation in just one breast and carefully monitored the other one which had some stuff going on. I didn't want radiation to the chest and none of the reconstruction options appealed to me. Since there were questionable things going on in my non-cancerous breast I took the opportunity to have symmetry. I felt I would feel better flat, and I do. It would be great to see this presented as an active, healthy, affirmative choice.

MT1, you are a hero.  I am facing my meeting with the BS on Wednesday.  Have been looking for three photos -- as you suggest -- but haven't found ones that are appropriate.

I never thought of having a PS do my 'close,' that is an excellent idea.  I have feared the 'dog tags' and I have begun to make my feelings known very clearly.  Still, I can see that some can't or won't understand.  Also having some trouble with my partner of 17 years.

I plan to 'rock' clothes when I am flat.  There are so many things better suited to a flat chest.  I am a DD now.  I plan to be very proud.  I don't understand -- but I do support -- wearing forms, or wearing them sometimes, and then going flat other times, or wearing them to dress-up functions.  I support the women who do it, but none of that makes sense to me personally.

I am going to show my seven-year-old daughter what a real woman is.  I am going to show her what love is.  I choose to stick around through all of these surgeries, to be proud, to show  her what a proud woman is.  And I am looking forward to doing so.  Those who can't get supportive of that are going to fall by the wayside.

Bobogirl, do a Google search for a book called "Show Me." You can't buy the book but there might be a medical library near you that has it. My daughter is in the medical profession and was able to borrow a copy for me before my surgery. I did as MT1 mentioned and took a picture of what I would like, what was acceptable, and what I would cry non-stop for two weeks over. I don't know if they loan the book out to those not in the profession but hopefully you should be able to at least view and copy some of the pictures. I believe there was also a second book put out. 

Scroll down at this link and you will see a front and side view of a very nice BMX with straight scars. I wanted, and got diagonal because I do like V-necks:

http://www.breastcancer.org/pictures/treatment/mastectomy_photo

MT1, I really like what you've done around here. A bit of a shake up and re-evaluation is a good thing.

Gosh Barbara, that photo of the lady with the Peacock tatoo - beautiful!

Hi Barbara, thanks for that. Read also about you and your MIL. She sounds like an inspiring presence in your life. You and MT1 who started this thread might be interested to know that there is no pressure to reconstruct here in Ireland. The BS lets you know that you can get a referral to a PS if you want one. End of. I don't imagine Irish women are psychologically and physiologically so very different to women in the US, or women anywhere else. Reconstruction is not a necessity, but rather an option, and should feel like that.

Well done on creating and running the website.

Yes, Erica, I like your website too, and I really appreciate it very much.

I too wouldn't mind photos of my chest being out there.  It is different from the few I've seen in that my scars are lower. 

I am so incredibly lucky that my surgeon did such a good job.  I had no idea I could have scars that run under my pecs and I'm so pleased to have them.  They're slightly uneven, but so are my pecs now - that's a result of losing a little one to the goal of a clear margin.  I had told her I didn't care about my appearance, which was true at the time of surgery when I was so scared I was going to die, but is not true now that I'm back to participating in life.  I'm very glad to have the thoughtfully flat chest I have.

Somebody would have to remind how to load them onto this site.  I remember seeing the process described before, but not where.  

For the last year I've been contemplating a prophylactic MX, I had a UMX 3 years ago, but couldn't justify, at that time, taking off the perfectly healthy breast.  Mostly, I've worn a prosthesis when out and about, at home and when swimming I'm usually 1/2 flat.  I decided around Christmas to have the prophylactic MX sometime this spring, tired of either being lopsided, or having to wear a bra w/prosthesis, it causes a fair amount of neck and shoulder pain, as well as makes my LE worse. 

For the last couple of months I've been experimenting with going 1/2 flat at least half of the time.  I wear a tight cami (my remaing breast is a DD, so pretty large, can't just let it flop around).  I'm much more comfortable w/o the prosthetic.  Hardly anyone notices either.  I do layer and use scarves, but even when I don't .... it seems to go mostly un-noticed.  I still think it would be more comfortable to have the MX, but am afraid that I'll regret it after, though I hang out on Flat and Fab FB page alot and they all seem really happy.  I still believe I would get prosthetics to wear now and then, but mostly go flat. 

But now that I've been sporting the 1/2 flat, I've been having doubts about the prophylactic MX.  There will be loss of feeling, which I hate on the MX side, it could trigger LE on that side (rare, but it does happen), I'd be lopping off a perfectly healthy body part (not sure I like that idea).  I probably need to start a pros and cons list.  I see my BS next month for follow up and want to talk to him about this.  I'd love all of your opinons - worry I'll regret  it after, but I'm pretty sure I'd like the freedom. 

Thoughts, ideas, opinions - Please! and thanks!

Linda

Thanks indenial for the input - I was so sure for 6 months, then the last month or so the doubts have set in. 

Thanks Melanie!  A lot of good points!

I ditto the other responses.  I am one of the happy ones you mention who never looked back at the bilateral with one proph.  Symmetry is of paramount importance to me.  I would do it all the same again tomorrow if given a do over.  But even with all of that said, this needs to be a decision that you are totally comfortable you are making the right decision.  From the sounds of it there is no good medical reason to make this decision now and with doubts, I would really advise that you step back and wait. 

Barbara