Undecided about reconstruction

I kind of got everything thrown at me at once since I did bilateral first before chemo.  So I just kind of went with suggestion of first surgeon (immediate reconstruction with expanders).  I did realize there was a chance it could fail (because of radiation) but then thought I would have other options.  So I guess I never considered not having reconstruction.  If I had to do it again, I would do it again but there are many people who dont and are very happy with their decision.

I was diagnosed on June 5th last year and hopefully will be getting my nipple tatts (that IS something I have gone back and forth on a million times - nipple reconstruction and decided against it) on June 5th of this year. 

Not sure that was helpful at all.

And I just realized I posted in the wrong place.  Sorry.

When I was first diagnosed, the plan was to have a bilateral and depending on the sentinel node biopsy and other pathology, possibly chemo. It didn't appear that I would need radiation. Plastic surgeon recommended immediate reconstruction with expanders, saying I did not have enough tissue for flap surgery.

 I was then surprised to find, after mastectomy was done and expanders were placed, that they also recommended radiation due to amount of positive lymph nodes and size of the mass(which was ILC and bigger than imaging and biopsy had indicated). In my case, the radiation caused capsular contracture, I also got an infection during exchange surgery(also more likely when you have radiation), and the implant on the cancer side eventually failed. It was removed and for 5 months, I have had one implant and one flat side. I think I don't want to spend one more day of my life recovering from plastic surgery, and I am doing fine with a prosthesis.  I am pretty sure I can be "happy" with one breast for the rest of my life. But I am also thinking there is no time limit on recon.  Maybe one day I will change my mind or there may be recon options developed that I can see myself going through. Meanwhile, I'm OK with my body. I have some lumpiness on the flat side from the infection, etc. I think taking care of that would require another surgery, so I will probably just live with it.

 I think if I had known I was going to need radiation, I might have pursued recon with my own tissue. My PS said I wasn't a good candidate. since they told me he was the best, I  didn't get a second opinion. I should have. Or I might have put off a decision until more was known about my cancer. I wish I had found this community pre-mastectomy so I could have done exactly what you are doing...talking to people who've been through it all.

So I guess my advice is to keep asking questions, keep talking to people, do your research, and take your time deciding on recon.  There is no rush.

Good luck to you with everything!

Angela

Hi Hoolianama,

I had a lot of the feelings you describe. More than some women, perhaps, I was very worried that if I went ahead with reconstruction and it didn't go well, I would be devastated. Since I'm slim, I knew that if I didn't have reconstruction I wouldn't look too out of proportion even with a flat chest and that if I wore breast forms, they would be on the small side and therefore very lightweight.

I did consult with an excellent plastic surgeon and even scheduled lat flap reconstruction (I'd had radiation on one side, so implants were out, I didn't have enough tissue for DIEP, and I didn't want to sacrifice what little I have on my butt for GAP). After much soul-searching, I concluded recon wasn't right for me and cancelled the lat flaps. One thing that helped is that my husband actually preferred that I not have reconstruction--he wanted me to have the minimum surgery possible, though he would have supported whatever decision I made.

Although I chose not to have skin-sparing mastectomies (I wanted a smooth flat chest), it has been helpful to know that if I ever change my mind, reconstruction is still an option.

Almost three years later, I haven't regretted my decision. I'm happy to say that my husband hasn't regretted it either. I've chosen to wear breast forms and feel very natural and confident in clothes. I started a non-profit website, BreastFree.org, to help women going through the difficult process of deciding whether or not to have reconstruction and to provide information and advice about living breast-free. Perhaps you'd find some of the Personal Stories and other information on the site helpful.

Best wishes, whatever you decide.

Barbara 

My first inclination was not to have reconstruction.  Last fall (almost two years post left breast mastectomy, 1 1/2 years post right breast mastectomy) I decided that I definitely did not want reconstruction.  I hate mastectomy bras and most of the time I go flat.  I visited a plastic surgeon to discuss scar revision and he suggested that I seriously think about reconstruction as I am so "young" (58). 

Well I did go home and think about it; couldn't decide.  About a month after I saw the PS, I went on a cruise.  I have lost a lot of weight, lost two huge flopping breasts from mastectomy, and had a lot of new cute dresses and tops to wear.  For my evening clothes, I planned to either wear my prostheses with my iron maiden mastectomy bras or just attached them inside the dresses.

Neither method worked very well for the clothes I wanted to wear, so off I went back to the plastic surgeon in November to discuss reconstruction.  Since then, I have though about it and, as time goes by, am coming down on the side of reconstruction.  The final shoe dropped when I went clothes window shopping in a store with fantastic dresses and tops that I absolutely love.  They would not look good if I go flat and will not work with the ugly mastectomy bras.  I don't want to spend the rest of my life in tee shirts.

 I came home and called a plastic surgeon ( a different one than my first two visits for a variety of reasons) to discuss reconstruction.  I am pretty sure I am going to do it.

I am seeing the plastic surgeon this Tuesday and am surprised to find myself excited (also nervous) about doing reconstruction (implants).

It is a complete turn around from what I thought I wanted and has taken 2 1/2 years post mastectomy to come to this point. 

i am cancer challenged.  my onc is VERY relieved that i have expressed no interest whatsoever in reconstruction.. she told me that for those who are at risk of future recurrence, having no breast tissue is desirable.. so that any mets to the ribs, lymph nodes etcetera can be actually felt and not just guessed or be seen with scans.

i am fortunate that my husband is ok with that.  i am kind of androgynous in a way so i am very comfortable.. some women might not be.

i have chosen to wear woven fabrics rather than knits... i  wear a bra that creates the illusion of a bust line on my missing side so i look normal if i want to.

I'm 10 years post masectomy and am now deciding to have recon-I have larger breast(s) and my proth is HEAVY.  I have to be careful about the clothes I buy as I don't always wear a mx bra and don't want my proth to show.  I have came up with every reason to delay this decision and have decided that enough is enough.  For a while I was waiting for the reoccuence(you know how it is). I am lucky to have not had any lymphedema or restriction of movement and am afraid that I will be asking for trouble. My hubby and I have done great with this for all these years---when I was first dx I realized that I was so much more than just breasts!  So am going to buck up and go for it!  The good thing about making this decision is you are in charge of if and when.

It sounds as if you weren't fitted well for your mastectomy bras and breast form (prosthesis). Especially since you're not large breasted, you should be comfortable and look good. Many women here report that once they put their breast form on they forget it's there.

We're all different, so I can't really predict how you would find being breast-free after your second mastectomy. But, speaking for myself, my bras don't shift or ride up. I don't like really tight bras, but even though I don't wear mine very tight, they don't shift around. 

That said, it sounds like a good idea to consult with a couple of plastic surgeons. I did and it helped me reach my decision (non-recon in my case). You could also delay reconstruction and see how you feel after the mastectomy.

It's a tough decision. Good luck.

Barbara

BreastFree.org

I decided against reconstruction surgery, not for any one reason  apart from the fact that I don't enjoy pain and having to go through this again  was just not my ideal.

I have found a solution to many of the bra issues and inserts. I spoke with a friend who put me in touch with a shop in Toronto called:: Take a walk on the wild side. The shop is not yoir run of the mill"ladies shop" but it does cater to men who are cross dressers and transvestites. Who knows womens bodies better at times?

I contacted the store owner lovely  person by the name of Paddy and she told me she has many women customers who are post surgery they are properly fitted not these hard lump things that slide up from your bra. but very natural feeling inserts with nipples or not  that are far more appealing than what you find in womens stores.

Here is the web site. I sent away for the brochure there are some great articles good prices and you don't feel like you have been robbed..

 www.wildside.org

For me there was never any question - no more surgery.  By the time I got to the bilateral mast. it was my 4th breast surgery and I had absolutely had it those breasts.  Clearly they were past their "best before" date and I wasn't going to have them reconsituted no way, no how.  My surgeon didn't even suggest of PS consult, possibly because I had already been radiated on both sides or because I was so adamant. 

At first it felt pretty strange, especially when I rolled over in bed.  And I admit I sometimes look wistfully was some clothes that are very pretty, but would look silly on me.   It's been a bit over a year and I still haven't gotten around to getting any prostheses.  It just didn't seem necessary.  My onc. says I can still change my mind, but I'm 63 and it seems unlikely.  My attitude would likely have been different a few decades ago.

Now I think it would be sort of cool to show in the "wild side" place.  I wonder if my insurance would accept that?

When I found out I had BC, I knew fairly quickly that I wanted a mast instead of lumpectomy/rads; and I never even considered having a prophy on the other side.  ...But, I wasn't absolutely sure that I didn't want recon.  So my breast surgeon/surgical onco referred me to a good PS for a consult prior to my mast/SNB. The PS she recommended was someone who specialized in recon on women having BC surgery.  My surgeon's nurses all told me the PS was "terrific--you'll really like him."  (I did.)

When did I decide for sure that I didn't want recon?  Somewhere in the middle of the consult with the PS.  My dh and I were there together.  We watched a video, looked at before & after pics, and saw drawings of how the various recon surgeries were done. The PS checked out my available tissue and what could be moved where; and he said I was a candidate for just about any of the options.

But, after hearing how long the flap and microvascular surgeries took, and what the risks were; and after listening to the PS say over and over that implants would eventually fail--they didn't last forever; and after seeing the photos of women fairly soon post-op, ... I bailed out.  Or, maybe I chickened out.

I guess I never really was on-board for recon.  I had told my surgeon there was only a 10-15% likelihood I would want it. Still, she thought it was important for women to hear about all the options, and to understand that we can have immediate recon, or we can leave extra tissue for later; and we can always change our minds (either way, actually). 

So, I said "Thanks, but no thanks."  Nobody had hard feelings.  (The PS was very good, and very, very understanding. He told me to call him any time, if I changed my mind.) 

I am now 16 months out from my left mast/SNB, and I have no regrets. I've always been small (34B/36A), and, as Barbara suggested, it's probably easier for women who aren't dealing with a double-D on one side and a bare chest on the other.  I just wear regular bras--no need for those iron-maiden things or a turtle-neck bra. My scar line is well hidden, and my chest has always been flat anyway.

Right now, I'm sitting here wearing jeans and a T-shirt and no bra. And, nobody cares.

Hugs....

otter 

I am having a left mastectomy on July 13,09. When do you get fitted for a prosthess before or

after surgery.  My surgeon wants me to wait for one year before having reconstruction. I am also confused about doing reconstruction.

I am a 12 year survivor and did not want reconstruction at the time of my diagnosis and masectomy...All I could concentrate on was getting rid of the cancer.  After about a yr. I found I was staying stuck in my grief and knew that I would have to have a new breast to feel totally healed. I had a saline implant with tissue expanders and a slight lift on the good breast to make me even.  They tattooed a nipple on and had no pain or trouble with any of it.  I was 50 yrs. old at the time...It really gave me a whole positive attitude and I have never been sorry that I had it done...Have had the same artificial boob for over 10 yrs. now...Best of luck with your dicision...Caludia  Hopkins MN.

 I totally understand your conflicted feelings. I was there just one year ago.  I had a single mastectomy and when I met with my PS he told me that he wasn't rushing my decision but did want me to be clear on this one fact....your skin will be more plaible and able to give the most satisfactory esthetic outcome if you do reconstruction at the time of your surgery because the skin will be more stretchy and fresh, free from scar tissue, etc. He was willing to do whatever I wanted or even at a later date but I would not have gotten the same outcome.  I had expander put in at that time and the implant replacement surgery in July.  While I do totally hate having this 5 inch scar and lack of any sensation of feeling in that breast (or shape, as I call it),no nipple,  I would have those things whether or not I had reconstruction. At least this way my clothes fit normal, I have good posture, can sleep and feel normal, and look normal in swim suit, exercise bra or low cut blouse. Other women I have talked to who opted out of reconstruction are not so lucky and do complain to me about how their clothes fit and posture are negatively affected.  I would add that many women aren't prepared for the lack of sensation after mastectomy....sometimes you think you'll get a new breast out of the deal and that simply isn't true. All nerves are severed when they separate the tissue from the skin so you are left with no feeling whatsoever. It does take some getting use to.  All the more reason I am totally glad that I did not give up my other "good " breast!  When I get out of the shower I see myself every single day. I am glad that there is something there rather than nothing.  You don't need those breasts for breast feeding and you won't ever be able to use that breast for sexual stimulation, but you are still a woman and you do still have to feel as much like yourself as you can. This was the next best thing to that for me.  Best of luck to you in this very tough decision.

Since many of these postings are over 3 months old, I'm wondering if I could get an update from those of you who had expanders and the success or lack of success as a result.  I have my surgery schedualed in two weeks.   Thanks