Joining the Club

Raye99

After appts with two ps's, I have been intelligently informed that my only recon option is a pedicle TRAM flap: no free FRAM, no implants, no lat flaps. Those rads destroyed the blood vessels, so pedicle TRAM is my only option. I say NO WAY to that. Frightening to say the least.

So, I will be having a proph R mast this month w/o reconstruction and maybe in the future, will have some recon done, but now I just cannot sacrifice a major core muscle for A cups; I am active and the recovery scares the you know what out of me.

I've got the list of pretty bras for us little gals (proth size) all ready to go. Thanks for that.

Thanks for listening Ladies.

Raye

PS - Feels good to have finally made a decision.

Anonymous

Raye
Im sorry to hear of this turn of events for you but glad that you seem to be at peace with your decisions...hope everything else is well with you since we last talked.

Hugs
Jule

Raye99

Hey Jule! Good to hear from you. Hope all is well and you are enjoying your summer.

Yes, I was a bit disappointed, but I do have peace of mind now that I've made my decision. At least I will be "even" now.

Hugs right back at ya.
Raye

caaclark

Raye,

Keep us posted on when your surgery is. Everyone is different but my recovery from the mast. was pretty easy. Let us know if you have any questions. I, too, am active, which is one of the many reasons I chose to skip reconstruction.

SusaninSF

Raye,

Sounds like you made the right decision. I can imagine that the loss of abdominal muscle would seriously compromise your core abdominal strength. I'm not sure what kind of activities you do but I would think your abdominal muscles would be used in just about everything!

It must have been hard to hear how limited your options for reconstruction are. Think how far they've come in the last ten years regarding reconstruction options. In another ten there will undoubtedly be many more options. In the meantime, I hope you will find, as I have, that living without reconstruction is very liberating. Any kind of autologous tissue surgery free or not would involve yet another wound and scars with all of the possible complications. Implants, as I experienced them before I gave up on reconstruction, don't feel like a real breast if you are very active. Oddly enough, my prosthesis feels a lot more like my old breast when I am doing yoga than the implant ever did.

We'll be thinking of you so keep us up on how you are doing. Seems that those who had mastectomies without reconstruction heal very quickly.

More hugs, Susan

Raye99

Carol - My surgery is scheduled for August 22. Thanks for the bra tips. Question for you: do you get these online or at the mast shop? My mast shop had only matronly bras and a catalog was not offered up.

Susan, thanks. Your post was so helpful. It is so reassuring when others understand my position in this and why I am not willing to make certain sacrifices at this point for breasts. Mostly I do Pilates and run, but you are correct, the abs are used so much in every day life. The docs assured me that I would learn to do things differently and eventually get used to using only my obliques, but I am not ready for that.

Thanks again for your support, Raye

OLBinNJ

I had immediate reconstruction after my mast in '96, and a year later, I had to have the implant removed due to scar tissue encapsulating the implant and my incision tearing open (I felt like the implant would explode out of my chest!). My PS told me he would NOT recommend any further attempts at recon. A little hard to hear at the time, but in a way I was relieved to get the implant out of my body. I am also very active walking, pilates, swimming, etc. I feel so much better without the implant, and have finally found forms that I like that really work for me. I have never found a mast bra that I like, so I just use regular bras with an amoena contact light or amoena 126 leisure form. Good luck and stay active.

Erica3681

Hi Raye,

I agree, it feels good to finally make a decision. I was a wreck while I was trying to decide whether or not to have recon, having nightmares about surgery, etc. I hope you'll feel at peace with your choice. For me, it was reassuring to know that I wasn't foreclosing my options. We can always have recon later if we change our minds, and new, more appealing procedures may be developed.

I hope your surgery goes well and that you heal rapidly.

Barbara

caaclark

I get most of my bras at a lingerie shop that specializes in mast. bras, as well as in regular bras. My fitter orders stuff for me all the time and then calls me to try them on. If I like them I buy them, if not, she keeps them. I have ordered online for some stuff but only for bras that I already have or for ones that I am pretty certain will work for me. I think I lucked out that my fitter understands my style pretty well.

wallycat

Can't add much more to what the gals have posted here...making a decison and getting a plan helps a lot.
I am sorry to hear your desire for wanting recon didn't pan out. I agree with Barbara(Erica) that there may be newer things down the pike in a few years.

I actually wondered why they can't use the Restalyne (like they do for filling face lines) to even us out a bit (my ribs show and I look uneven (to my eyes).

SusaninSF

Raye,

Wow! That's scary! Get used to using only your obliques? I'm sure if you bring that possibility up with your pilates trainer he/she will flip! When I chose to do reconstruction my pilates trainer strongly advised against any kind of reconstruction. Since he's a gay man I figured he just didn't understand. Now I see his wisdom.

Like OLB, I mostly wear regular bras with the Amoena Contact Light form. You'll be able to get lots of advice on forms and bras from this site. Also, Barbara is building a site specially for those of us who aren't reconstructed. My advice is to do a lot of research on-line before going in. My first fitter just showed me one kind of form and I bought it because I didn't know there were choices. It's amazing how many different kind of forms are available!

I was also really shell shocked when I first went to a fitter. I went to the store at the hospital so everything about it screamed "cancer". You know, they sold wigs, all kinds of pink ribbon stuff, cancer survivor books, etc. I kind of fumbled through the process and then went outside and cried.

Then, I did some on-line research and wanted to try out the Amoena Contact Light. I went to Nordstroms. They were wonderful! I went during the day when they weren't busy. Probably best if you make an appointment. They spent a long time fitting me with a prosthesis and then a bra. The whole process took more than an hour. I felt embarassed at first but they quickly put me at ease. They are so patient and matter-of-fact.

Cheers, Susan

geebung

I admire all you women who have made a decision either way about reconstruction. I don't know how I will decide what to do. Each day I go through a range of thoughts about it. Sometimes, I really want it and other times I don't want to tempt fate. It must be kind of liberating to decide and feel good about your decision. I can understand both decisions - very valid reasons for recon and not recon. How to decide?? Maybe time will help.

nagem

Time DOES help. For a variety of reasons, I was forced to wait for my bilateral mastectomy, and during that time I had the leisure to look into all my options and consult plastic surgeons and think about my priorities. By the time I had the surgery, I was surprisingly confident (I'm typically a waffler who gets immobilized by uncertainty) about my decision. I've never looked back. It helped me to make a list of reasons for the mastectomy (which was partly prophylactic) and pros and cons for reconstruction. One thing you might consider, as others have suggested, is to have the mastectomy now and worry about recon later. By the way, I'm a yoga freak, and that was definitely a consideration in my decision not to have immediate reconstruction. Good luck.

OLBinNJ

Like Susan, my first fitter showed me one kind of form and I bought it because I didn't know what the options were. Since then (ten years ago) I have found other options. The internet is wonderful for finding what is available. Do your research online, and ask your fitter to order stuff for you to try on. I think you may find that having been active will help you in your recovery. Good luck and I hope you have a speedy recovery.

Raye99

Thanks All. I feel so much better. Geebung and Nagem - I am a waffler too - one moment thinking of the freedom, no complications- next thinking, ahh, I won't have breasts! All of your feedback has helped me so very much.

Yes, Susan, obliques and a little muscle on top that they leave, but apparently that will be numb for some time and some never get feeling back in that area. As for Pilates, "I would have to modify my moves to accommodate my lack of strength." ugh. Thanks for the tip RE: Nordstrom. I went to a specialty fitter and she pretty much told me, what we have is what you get, you sorry little aa wearin girl.

Wallycat- If I can't have boobs, I want Restalyne for my mouth lines!

Barbara - thanks. I was having dreams about the survey too. And, yes, there is always the future to have something done. I am hoping they come up with a starfish type of recon where they just grow back perfectly.

Carol - your avatar is great! Your hair is getting long!

OLB - I am sorry to hear you have no options for reconstruction, but your attitude is great and you are staying active and healthy. Good for you.

Time to work, ladies. Have a wonderful day.
Raye