Failed with Tissue Expanders - please comment

sbragg

Hello,

I would greatly appreciate hearing from anyone who has had to have the tissue expander process aborted before implant exchange...

 I am 5 months post bilateral mastecomies with TE's and just a few days ago, it was determined that I will not be able to go on...ongoing problems with inflammation and rashes, not to mention much discomfort.  It was presumed I would be filled enough at 400 cc's but the PS miscalculated and I would actually still need another100-150, but no can do, with these ongoing compplications.  Surgery is to take place asap and I was wondering about other's' experiences with this...and what the recovery from this might be like/what to expect. The other disappointment is that they don't even know when they can clean up this mess of excess skin, etc., as they don't want to aggravate the area...so I'm wondering how any of you dealt with that?

I am also interested to know what might be involved with prosthesis...? are they comfortable? and how do you come to grips with not having even "foobs"...

 I would love to learn about your personal journey with this... Thank you so much, Sherry

KellyMaryland

Sherry- this was not my experience but just wanted to bump this so it doesn't get lost.

Kelly

Enjoyful

Sorry for your discomfort, Sherry!  I had a mild infection after exchange that cleared up with antibiotics but nothing like the discomfort you're experiencing.  Do your doctors think that the problems will continue with the permanent implants?

sbragg

KellyMaryland..thank you.

sbragg

Enjoyful,

Thanks for your reply....The process is being aborted which means I am not a candidate for the permanent implants - they are removing the TE's because my body is not adjusting and there is too much inflammation - the PS's (2 opinions) do not believe this will change over time...and are suggesting that I not try again but accept that it is not practical to. So no foobs for me....   

Anonymous

sbragg - I just wanted to let you know I'm thinking of you!  I don't know much about this issue, or what your options might be in the future, but don't give up, maybe at some point there could be other alternatives or treatments for your body's reaction to TE's...good luck!

sbragg

fire-dancer, Thank you...

cbm

Sherry, I'm so sorry you have to go through this.  I did not try for implants or the expanders they involve for a number of reasons.  But, my surgeon left a good bit of skin and tissue on the assumption that I'd want to do something at some point and it might be needed.  I haven't done anything yet, so I may be able to offer some interim ideas or some hope.

There are two patients in my oncologist's practice who are getting micro-fat transfer by injection  from Dr. Khouri in Miami, with good results, apparently.  They will end up with b or c cup sized breasts, I believe.  These are not touch-ups, according to my p.a., but actual transfer of fat from the abdomen to the breast area, to create breast replacements. The p.a.gave me a referral and told me it's the least invasive and least risky of the options because it doesn't involve surgery, for women who have enough tissue to work with.  I have no idea who is a candidate or who is not, I'm hoping I am but have not made my appointment yet. However, because it is your own fat, there may be less risk of contamination and infection, which was my main fear.

It doesn't sound like an immediate solution for you, but it offers some down the road possibilities.  I think that techniques in surgery-world tend to spread via conferences and papers and posters, at least i hope so.  

My own solution for the time being is looser clothing, lightweight scarves, and a bandeau with soft cups and room for some fiberfill, from Macy's.  The brand is Fashion Form and it's not a prosthetic bra.  I find those to be heavy and irritating--ironically, since my own breasts used to be heaviy and irritating, too.  Conversely, this is soft and gives a vague illusion of breasts,   I wear it without the removable straps, because they cause the bandeau to ride up or twist. 

There is also a new prosthesis model that is very expensive, but that you wear a regular bra with.  The fitter makes a mold of your body and the prosthesis is made for you.  You apply it using sort of a suction process.  I believe that some insurance companies pay; mine would not. 

It runs in my mind that each form is $2500, but it might have been more.  

 I hope this is helpful.  

Warmly,   

Cathy 

sbragg

Hi Cathy,

Thank yo so much for the info! it is much appreciated ...I will review these concepts...they make sense; especially the idea that the tissue is left for an undetermined time to allow you to make a decision about options...I am in the emotional vortex right now and so cannot make any decisions...best to leave that for down the road...so yes I can see the benefits of leaving the clean up for much later...I sure wish you all the best in your decision-making about the fat injections...that could be a great option - I will research that as well - I have alot of fat to spare, I'm thinking

Great to have voices from other women - makes this journey more bearable..

Take care, Sherry

Erica3681

Hi Sherry,

I'm sorry you've had such serious problems with your expanders. It must be very disappointing when you were expecting to have reconstruction with implants and now have to contemplate removal of the expanders.

One suggestion I have is to visit the "Breast Prostheses and Reconstruction Alternatives" Forum here on breastcancer.org. That's where women tend to go if they've chosen not to have reconstruction or are, like you, choosing to remove expanders or implants. You'll find lots of information and advice there.

Also, you might find it helpful to visit my non-profit website, BreastFree.org, which provides information, advice, and support for women who don't have "foobs" and either wear prostheses (breast forms) or go flat. Most are women who have chosen not to have reconstruction, but others are like you, in that they tried expanders/implants and it didn't work out. There are personal stories and photographs on the site (many stories and photos were contributed by women I met here at breastcancer.org), and advice about finding the most comfortable and attractive bras, camisoles, and breast forms.

I chose not to have reconstruction because I actually preferred the idea of having external prostheses rather than internal ones (implants) and I didn't want to undergo the long surgery and additional scars required for flap reconstruction. But my objective was the same as women who choose reconstruction: I wanted to feel whole and attractive again. It's taken some trial and error, but I've found wonderful breast forms that are comfortable and look totally natural in clothes. At least in the short term, once you've removed the expanders and had a chance to heal, I hope you can find bras and breast forms that look and feel good.

Barbara

Snobird

Why are you not considering DIEP or Tram Flap surgery? It uses your own tissue. You shouldn't have allergic or inflammation issues with those. You should talk to a PS who does flap surgery.

sbragg

Hi Erica/Barbara..?

Thnak you so much for the website/forum suggestions - I will definitely review these! It's rather interesting in that I too initially thought it would be best for me to forego internal transitions and just go flat , using external products - as that was more in tune with my character, if you will...however everything seemed to be rushed and the surgeons convinced me that this would be the best option..somehow I let that happen...and then during this process, every day I wished I had gone with my original thought..then when I was advised this wasn't working and it would be aborted, I was devastated!  A bit bizarre that I went through all these mixed feelings - probably due to feeling like everyhting was rather out of my control...and also because I have suffered these past 5 months and for not, it seems...perhaps I will understand it better, in hindsight...   I think too I sensed that my husband felt it would be best if I tried the implants...anyway,  I will research these sites and I thank you for your time! As well, it is wonderful to hear about your choice - very encouragingthat that you took a path that was true to you and I applaud that - all the best in the years to come! Sherry

sbragg

Hey snobird, thanks for sharing your thoughts.... after much research and given other medical considerations, it was determined that the DIEP/Tram were not options for me.

sbragg

Hi Erica/Barbara...

I just reviewed the Breast Free website - it is wonderful!!! I wish i had found it before!! very well down and encouraging...thanks so much and keep up the great work!! Take care, Sherry

Lynkoura

Sherry

Thinking of you and wishing you the best.

Don't feel bad about your earlier decision. I'm saying that as someone who still wonders if I have made the right choice. Someone helped me a lot by pointing out that reconstruction decisions are basically a crap shoot - we can research but even then it might not work out. There is no way of knowing beforehand what problems we are likely to encounter - whether we will fall into the x% that have problems. I can understand your mixed emotions - because you had adjusted your thinking to having implants. Best wishes getting through the days until you can sit back and take stock of things.

sbragg

Lynkoura! great to hear from you! I hope you are well and enjoying life...

You're right and I appreciate the encouraging words...I guess it is indeed a crap shoot ..and when you are are making decisions, right or wrong, that's empowering - but when someone else tells you can don't do this, it's more difficult to accept...I appreciate that there are strong and caring women who take the time to respond to me and share their thoughts and experiences...it helps me feel less alone...and I gain more insight to this "world" we live in and that gives me back some power...the 18th is the "D" day for me..  so thank you for your reply...all the best, Sherry

Anonymous

Sherry, in my opinion it's better to have your body reject things during the expander phase than to make it all the way through to having implants and then having to bail. In April it will have been three years since I had my bilateral mast and expanders placed, and I am currently scheduled to have my implants removed and not replaced. I have capsular contracture, and I believe one of the implants is somewhat poking through a muscle. I had a very painful expansion process, and I wish I had been wise enough to have cried uncle then. I don't think my body ever wanted this. I am looking forward to having them removed and hopefully being pain-free. That's a crap shoot, too, I know. It will be what it is, but I know it has be better than how it feels now. The implants would need to come out sometime anyway!! 

Good luck on the 18th. I will be thinking of you. My "D" day is April 5. 

sbragg

Hi Tina337,

Thank you so much for sharing your story...I am so sorry to hear that the expander process was painful and that the implant process has to be aborted...it just doesn't seem right that we go through this traumatic breast removal and then there is "insult to injury" to follow...in the big picture, I do feel that life could be alot worse, however it is sometimes difficultto see that...I was fortunate in that I didn't have to go through rad or chemo, and I feel for those who have - that must be another really difficult stage - so perhaps it is simply accepting this and counting our blessings...as twisted as it seems, I am apprciating so much that I am not alone in this experience...I don't wish it on any womam but I am so glad to hear from those who have gone through it...I will be thinking of you on the 5th and I hope that we will both be "free" after all this... I would love to hear from you again and to know how the journey is going for you...do please let me know, if you're comfortable sharing again...I will also share how I'm feeling sometime after the 18th...all the best, Sherry

Anonymous

Sherry, I agree it could be much worse. I didn't have chemo or rads either, so I am very grateful for that. I look forward to hearing back from you post-surgery when you are feeling up to it. I will definitely share about my experience. I think other women who are having difficulty with their expanders or implants and need to change course midway or after reconstruction need to know they are not alone. I have a hard time calling this process a "failure." I know it's not my fault, but it's my body, so it's hard not to take this personally when it's happening to me. Goodness knows my PS wouldn't admit it's his "failure"! I think I prefer Lynkoura's crap shoot concept.

When I first decided to deconstruct, I felt like I was revisiting the mastectomy all over again. I definitely went through a mourning process for a couple of weeks. I'm sure I'll mourn again once the surgery is over and I adjust to my new appearance. However, at this point, I just want to be able to move on and not have my life be about pain and implants. The lymphedema is forever, but I think I will be better able to manage it without the implants, which will be a real positive. 

Here's to freedom, Sherry! I wish you the best possible results in your surgery.

Tina 

Nordy

Sherry... My reconstruction failed during the expander phase. Okay, so I had the expanders in for 18 months, but still... LOL! (Long story about a pregnancy and a move during expansion, that kept them in so long!) Anyway, I was devastated when they had to come out. I planned on just going without and wearing prosthetics... Heck, I had done it for over a year when I only had one mastectomy (the expanders were placed during the mastectomy for the prophylactic side) - but I hated it. The expander changed what was once a nice flat surface on my cancer side to a concavity. It had pushed my rib cage back and also caused my skin to thin - which it had not been before the expanders. Many people can go without breasts and they are fine with it... I was not one of them. I didn't like the way I felt about myself. I didn't like having to send my husband to rinse my prosthetics off in the shower after swimming at the beaches of Hawaii... I didn't like a lot of things about being breastless. So, a little over a year after having my expanders removed, I went to New Orleans and had hip flap (similar to SGAP) surgery. I now have beautiful B cups and they are ALL me. No silicone, no saline... just my skin, my fat and my blood. I love them. I love feeling normal again and not having to worry about my prosthetics floating up and out of my swim suit at the pool.

Many, many people live without reconstruction. I thought I could... but it was not for me. It looks like they are removing your expanders tomorrow??? Good luck to you - positive thoughts your way. It will all be okay... there are other ways of making a breast if you decide that you don't want to go without. It is all up to you. Hang in there!

sbragg

Thank you, Nordy! I completely understand your desire to have "breasts" and perhpas I will want that, too, down the road...things do change...for now, I am looking forward to getting these expanders out! it's too ealy, I suspect, to think that I could possibly want to try anything again; this has been too discouraging an experience....all the best to you! keep well, sherry

kerry32

Sherry,

I had a Bilateral Mastectomy in 2/08.  It was my second cancer as I had Hodgkins in 92 so for many emotional reasons I didn't want to bother with the reconstruction.  I have decided to do it now though and am scheduled for 4/4.

The one thing I can tell you is that wearing the prostethis was very  comfortable.  I have many very attractive bras (which insurance pays for) and several types of prothetics.  I worried like you that I would always be uncomfortable but I really never was.  I put them on in the morning and take them off at night.  That is my one fear of doing the implants next month - i am so comfortable now I'm not looking forward to the pain of expanders.

Please PM me if you have any questions on the options for prothetics.  I see Erica our fearless leader has responded to you also.  She is the best!!!

Anonymous

Sherry, good luck with your surgery today! 

Nordy, thanks for your post. I'm glad your reconstruction worked out and you are happy with the results. I would think having your own tissue must feel better than implants - and there's no expiration date on your new breasts. I keep wondering if I will be concave when my implants are removed. Your experience with being flat after a single mastectomy and then the area being concave after expanders demonstrates what those darn things can do to you. Dr. Massey has said I will most likely be concave, so I am prepared for the worst. The process of deconstructing has been more educational about recon than my initial research while I had BC. I know I did not have the pectoral muscle "released" (implant was not held in an alloderm sling), which requires muscle repair in order for things to lay right again. However, I did discover during a consultation with a local PS that some of the muscle, esp. in the sternum area, had been "relaxed" to help create the pocket. So, there may be some need for repair, but Dr. Massey will have to see how things look when she gets in there. 

sbragg

Hi everyone!

Well...it's done! the surgery went well - 2 PS surgeons ( 2 worked on me to get them done faster - one on each side) and took about 45 minutes after prep - was in recovery for 3 hours as it was a bit difficult to get the pain under control, but did eventually ( part of that was the psychological factor which tends to exacerbate the pain - I was pretty emtional ) but got back home at 7pm and although I am uncomfortable right now,  it is very managable. I do have to take some narcotics.

Tina, the relief of getting these TE's out is really a bonus...it's bittersweet but that abrasive pain and pressure is gone - and no drains!!! yippee! they did some nerve block while I was under and that has helped with pain...I am told that this surgery pain is typically minimal but because of complications this is not so for me....I was able to make some soup by myself around 8 and am looking forward to finding a comfy spot in bed to sleep!! Please keep in touch and I pray your surgery on the 5th will be an easy one!!! if you have any questions please don't hesitate to ask...Big hug, Sherry

Thanks to everyone for your posts and I will keep in touch with progress later on - who knows may have more questions!! keep well!!

sbragg

kerry 32

Hi there! thanks for sharing...I hope all goes well with the expansion/impants...As you may have read on these posts, not all women go through a difficult time -

I will look forward to hearing on your progress...and thank you for the info on prosthesis...I will likely want something for sure when I want to present for form - like when I teach/facilitate with target groups and so on...but otherwise I do think I will enjoy the simple freedom and try not to be overly concerned...this whole breast thing is a journey with lots of hills and valleys and a few mountians thrown in for good measure!  I will be praying that your journey has beautiful valleys...all the best and remember to let us know how you are doing..and if I can be of sny help with some insight; anytime, Sherry

sbragg

PS  Tina and Nordy....There is still too much swelling to determine for sure, but like your post, Nordy, there is some conclusion from my PS that the expanders do cause a bit more of the concave...so that's a bummer - I can already see that at the very top just under the the clavicle is indented quite far and so it will be challenging to fit summer tops with V-necks! But there may be ways of fixing that down the road and in the interim I feel after all this suffereing I just want to really live and love and just be glad I am alive....wishing you great days ahead - Nordy: cute story about the pool and the prost...!    what brave women you all are - I admire every one of you for identifying what is best and moving forwqrd to whatever that is for you....

Anonymous

Sherry, congrats on the completion of your surgery. Amazing you were up and able to make soup for yourself after returning home. No drains? Wow. That's something! I'm very glad to hear your pain and pressure from the implants is gone. That is the best part and should make it easier to get on with life. Thanks for sharing about the indentation from the expanders. It's helping me gear up for what to expect visually. 

Wishing you a speedy recovery and a healthy, happy and pain-free fresh start!

Tina 

sbragg

Hello Tina,

 Thank you! I am a bit more sore today...can be expected - slept quite well - made sure to take sleeping and pain meds...and of course Docusate! The incision on my right side is bothersome (my problem side, of course) but other than that I am getting ready to make brunch...I'm sure it will be great for you!! I have a note in my calendar for April 5th and will hold you close in my thoughts...

Erica3681

Hi Sherry,

Glad you're on the other side of the surgery. I hope you recover quickly and have complete relief from pain. 

Nordy

Hi Sherry! Welcome to the other side of surgery and no more expander pain!!!

Tina - are  you deconstructing? I maybe missed that post somewhere... and I am so forgetful, so sorry if you have already said. Since you are having Dr. Massey... this may be a redundant question, but you don't want her to make you some breasts from your own tissue? I am just curious! 

sbragg

Erica -  Nordy: Thank you so much for thinking of me!

Next question:  Has anyone had the experience of a lump forming as a result of nerve damage...? I ended up in emerg this evening as after determining unusual pain on the right (ongoign problem side) and a rather large lump (large grape size) just a the end of the mast incision scar, thought I'd better get it looked at - the doc states we will need to follow up but suspects that this was part of the pain and inflammation since original BLMX and that the TE's would have caused even more discomfort - now that they are out, he hopes there will be an improvement in about 2-3 weeks... would then follow up with U/S, etc.  Any experiences with this sort of thing??? Thanks a bunch, Sherry