Deciding to remove (undo) reconstruction

hey, Steph,
I've been quietly following this post. I hope your surgery went well and we hear from you soon.

~April

Prayers for safe uneventful surgery tomorrow, I am glad that you are at peace...

I was so happy to "hear" the calm in your note, it is obvious that you are happy with your decision, I'm so happy for you! You are in my prayers for your procedure tomorrow and for quick healing and recovery!

Love ya!

Suzanne

I'll keep you in my thoughts tomorrow and hope for a speedy recovery!

Praying for a smooth surgery and quick recovery, God be with you on this leg of your journey, you will do fine.

Thank you for all the positive thoughts. I think this is the best decision. I have to admit that I have been wallowing in Cocoa Pebbles for the past two days, which is probably not the healthiest coping mechanism, but I guess sometime you just have to cut yourself some slack. At least I realize that it is time to get out of that ugly little cycle and treat myself better. I know this is the right choice. If I am honest with myself, I am actually relieved that the decision is finally made.

I guess it is times like these that show that we are stronger than we think. I keep looking for some meaning in all this, and maybe that is it. Maybe it is just that resiliency is beautiful, and we are more than just the sum of our parts.

Thank you for the support and sharing your experiences. Surgery is tomorrow at 11:30, and I just hope it gets here soon.

I only had left mastectomy, and honestly after 3 surgeries to get there I have not been able to imagine how to subject myself to more surgery for reconstruction. I don't even wear a falsie yet, I just go without and I don't care. I do wear looser blouses instead of T's and I am an A cup on the right side so that probably helps, but I just don't think much about it. And I am older and married a long time so yes I think that does makes it easier on me I admit.

But at any age I am not so sure reconstruction is the norm, a lot of women seem to be skipping it. Steph I know you are young and unmarried and that makes it harder I am sure, but first and foremost you have to get healthy... everything stems from that... Take care and I am so glad you started this discussion and keep talking to us. Hugs, Karen

Edited by: KARENAZ at: 6/30/2009 (22:57)

I was scared about having reconstruction and I waited till I was sure. I put tremendous trust in God and had belief it would work this time. Truthfully it was very painful, the worst of all my 8 surgeries it seemed, but my surgeon says I have a lot of scar tissue and had some issues related to just finishing chemo 2 months before. I am very blessed by the work of my dr, I am happy I had the surgery.

Inga, I think I finally found something online. Donated human skin is AlloDerm. Pig skin is called Strattice. It's been available since early 2008.

Here's a link for anybody else who wants to read about it:

www.bookrags.com/news/pigs-are-sourc
e-
of-lifecells-new-tissue-moc/

And here's a news spot on it:

www.youtube.com/watch?v=88hTig-u-GU

Edited by: LORI2008 at: 6/29/2009 (21:07)

My situation is slightly different - I am a 38DD on my left - and a minus something on the right, because they removed more than just breast tissue. I finished chemo and radiation a year ago. I promised my radiologist that I would wait another year before reconstruction - she was adamant about healing.

But I really have to wear a bra because of the size/weight of the remaining breast. Not wearing my "boobie" seems ridiculous, because it helps to balance the bra, and (of course) the silhouette.

I think that, if I decide NOT to have reconstruction, I kind of need reduction or removal on the remaining breast, but I am so hesitant to go through that surgery recuperation again. I was so weak, and am still noticing nerve changes that the doc says are a result of the surgery.

I grieve for the loss, the imbalance, the feeling of not being me. I even feel guilty that I care so much about how I look. I watch those stupid model tv shows, and yell at the screen. I watch the makeover shows and think how shallow they are. They have no idea what kind of dressing problems we have.

Your messages really spoke to me. I think I understand, somewhat, what you are going through. I pray for strength and humor and loving, supporting relationships for all of us.

hugs
Caro

Gator12, I think that is where I am coming from, I want to match. I cannot imagine wearing anything while working out or being active. Just seems like it would make things harder.

I have heard of one person here in AZ that had cadaver tissue used. I think it depends on how much of a problem blood flow is, and whether your surgeon does vascular surgery, but I could be wrong. I know that there are a few doctors doing reconstruction with just fat harvested (horrible choice of word I think) from other parts of your body without muscle, but I think that is still pretty new and hard to find. Not sure though.

I feel a little better, but am scared about the surgery. I was supposed to start hyperbaric therapy today, but postponed. I think I am going to see if they will let me still proceed with starting next week, give the skin all the help I can to heal. I am pretty scared about the surgery, I just want the skin to heal.

I know it's been used in my state Il. I also know a woman who had pig tissue when she had a hysterectomy and her husband has a valve in his heart from a pig I think. I will ask my plastic surgeon if it is experimental, but it was covered in full by my insurance.

Steph, Your "rambling" brought back such memories. In '01 I had bilateral with right side cancer and then chemo and radiation. The right side got infected and expanders tried twice. I was 51 yrs old at time. My husband finally encouraged me to just forget it. The left side looked good but I wanted it out and same on both sides. I think I tho't if I decided to I could try again. This time of year, often I go flat. I always do at gym, they are hot and get sweaty. I wear them to church (my falsies, I mean) but I am happy and won't have more surgery. If I was younger and not married for a long time I think I would feel different. Just my story. By the way I am an R.N.

Inga, are you talking about AlloDerm when you say pig tissue? I'm not finding anything online about this. Is this something that is still considered experimental? I'd like to find out more.

A friend of mine is getting implants that she says are like gummy bears, which is something relatively new too.

I had a failed reconstruction in 2006. The skin opened up and I got a staph infection, the hole remained for 6 months. After 2 months the implants were removed, but as I said the hole on the radiated side didn't heal for a long time.
I had reconstruction again this year, I found a plastic surgeon who put in small silicone implants without having to use expander's, I was also rebuilt with pig tissue. I had the surgery 8 weeks ago and I have healed very well. I am a small busted woman now, and it looks great.
I am sorry for all you have been going through,if you have to have it undone, maybe you can find another dr. and have it done over again, in a year or 2, maybe for your 40th Birthday. Good luck Hugs!

I've not gone thru any of that, so I can't offer my story. All I can do is be here to listen, let you rant and question, and cry, and offer my shoulder and some tissues. Steph, you have a big decision to make, and I really think your family is on the right track. Give yourself and your body time to heal. Then worry about going on to step 2. If you can live with your body the way it is, don't dwell on what is gone, and still love yourself, do so. If not, then it's time to decide if going thru more surgery that may or may not work, is worth it, and if it will make your quality of life any better. You are still alive, and doing well. Only you can decide if going thru everything again will make your life better. Let yourself heal first, then take your time. Hugs, and good luck hon!

Now Lori, can I help Suzanne smack your boyfriend?? To say something once is OK, maybe a thoughtless mistake, but to harp on it over and over is ignorant. I'm sorry, but he needs to grow up. If he loves YOU, it would be with boobs, or without, but with no discussion of other womens. He's never going to stop looking, it's the nature of the beast, but he should learn to curb his tongue.....Good luck to you too, and hugs for you.

I currently am just in the process of expanding the tissue expanders and it was a hard choice to make. I'm sorry that your expanders didn't heal. My best friends' mother growing up had breast cancer twice and each time had a mastectomy and decided not to have reconstruction. She has prosthetics and I actually never knew until I faced my own surgery and my friend shared her mothers choice with me. Knowing this did not change my image of her, she is just as beautiful now as when we were little-and for her it is a bonus because she reduced her size and relieved a lot of back pain.
This is a very personal and hard choice I am glad you had the courage to share with us. Just remember that beauty comes from within. Of course it is easy to say it and read it and another thing to apply it to yourself. I know-the things I tell myself as I go through reconstruction are things that I would never ever say to anyone else.


Edited by: GRACIE0204 at: 6/29/2009 (16:49)

Lori, thanks for that. I feel exactly the same way, except I did not listen to my concerns and hesitation, and went forward with the expanders.

Maybe I am reacting so strongly because I decided to try when I was just starting to feel good again. Now, more surgery to remove them. At least after this hopefully it will heal quickly and I can get back to living.

I am a candidate for the lat flap, but after all the problems I have had, that just seems like a big risk to take to me. The muscle must serve some purpose, and risking it when there are no guarantees, it seems scary to me.

Thank you for sharing what you are going through. I think that our treatments have been about the same, except I started with the bilateral. Hopefully we will both find it gets easier with time, or that is is less raw.

My family says to get better, and then we can look at other options. I just do not think I want to go there though. The emotional rollercoaster is too hard. After making my peace with the loss, then doing reconstruction, and having to find my peace again, it is just too hard for me I think.

I guess this is just another part of the process we have to find our way through.

Steph, my heart just goes out to you....I can't speak from experience, but just wanted to offer support and encouragement. You ramble all you want girl!! And Lori, you too have lots of stuff and major decisions going on, it makes me feel a little guilty to still have my own "girls".....and by the way Lori, can I smack your boyfriend for you? Does he realize how insensitive that is? I hope he's doing it out of pure stupidity and not on purpose, but I still think that a good slap is in order....

I just wanted to send hugs to both of you, cry a little, throw things if you need to, but hang in there, and you will get through this, keep us posted!!

Suzanne

Hi, Steph and major cyber hugs!

I've had a bilateral mastectomy and have not done reconstruction yet. I had radiation on the right side and was also warned that implants probably won't work unless I do a tram too.

I don't bother with falsies. I go around flat chested. I've gone to a couple of FORCE meetings where many women were kind enough to do "show and tells" of their reconstruction. There's only been two women whose reconstruction fit my definition of beautiful. Both were the same type - latissimus dorsi flaps with implants - not something my doc said I'd be a candidate for. Everybody else's looked nice in clothing, but these two women looked beautiful naked, too. My frame of mind dictates that if it's only going to look good in clothing, it makes more sense to use falsies than to subject my body to more surgery.

I liked my breasts so to end up with anything I won't be satisfied with has made it hard to proceed. And I've heard too many women have problems with staff infections or their bodies rejecting the implants or the implants remaining painful to scare me off.

But I keep revisiting my decision to remain flat. And every time I decide yet again that I don't want to do reconstruction, I do a lot of crying and feel like I'm still mourning the loss of my own. I don't realize how much grief I still carry until I start thinking about reconstruction again.

Part of me feels like enough is enough with surgeries. I've been through four so far - lumpectomy, reincision, the bilateral mastectomy, and a complete oophorectomy and hysterectomy. The scars are horrible, but better than the hip to hip scar that will be left after a tram.

I guess this is a super long way to say that - when it seems like the "norm" is to do reconstruction, it's hard to remain resolved to staying flat. I guess I end up questioning my decision every time I feel very "unsexy" by not having bumps.

Sadly, most of my friends and relatives think I'll have a playboy bunny set after reconstruction. So they don't understand why I'm indecisive. I took my sister-in-law to the last "show and tell" with me. She was astonished by what she saw. She saw that there is a huge difference between reconstruction and augmentation. So at least she can start to understand why I haven't proceeded.

Will it ever get easier? I don't know. Maybe if my boyfriend would stop talking about other women's breasts or noticing them, it would.

Hi everyone,

I have not posted in a while, things have been difficult. I had decided to try to do reconstruction with an expander after radiation, and it just is not working (which I knew was a possibility). The wound just keeps oozing from a seroma, and I had a bad reaction to the expansions, so my skin now looks burned again. I decided to accept things, and have the expander and left implant removed, and just not do reconstruction. My surgeon wanted me to keep the left side (it looks great) but I do not think I would be ok with that.

I feel like a weight will be lifted, but am scared about what a life of no reconstruction might mean, I am 37, and just never expected to find myself here. Of course, I doubt any of us thought we would find ourselves here.

I am not sure why I am writing. I am not sure why I am so upset. For the past year, I only had the left side reconstructed, and never wore a prosthesis on the right, and I was ok with that. I even thought I was ok without reconstruction. But now that it is here, I am not sure what to do with this new grief. I have not felt this way through any of this, and I just do not know what to do with it. My husband does not know what to say, other than he supports me and will be there for me.

Have any of you had failed reconstruction? Did anyone decide not to go through any more? How did you handle it?

Sorry for the rambling. Thanks for listening.