One failed tissue expander, one good one...what should I do?

cd1234

Hi Everyone,

I have waited a year to begin the reconstruction process. I had the tissue expanders placed on 1/13/10. Surgery went fine, about a week later I began to develop an infection in the right expander. By Friday night I had a 103 degree temperature, shaking out out of control, blue fingertips, my chest was flaming red and swollen to a C cup. I had emergency surgery at 1:00am Saturday to remove the expander. My surgeon told me they can try again in three or four months, but that there is a strong possibility that my body will reject the expander. So, now what do I do? Do I remove the expander on the left side and just accept how my body looks? I did not qualify for any other procedures. I am 5'4" and 118 lbs, so most people don't notice that I don't have breasts. My husband is totally fine with me however I am. I am 38 years old, and was not prepared to have to accept that I might always look this way. Since my mastectomy, I have always told myself that this was only temporary. Although, I never really minded not having breasts. I am a big runner and I love to be able to throw on a shirt and shorts and head out the door.

Does anyone have a similar experience? How about those who have decided to go without breasts in their 30's or early 40's? Any advice would be helpful. I am quite depressed about the entire ordeal.

Thank you,

Crystal 

RaiderDee

Hi Crystal, Our stories are incredibly similar.  I lost my left TE to a mrsa infection 6 weeks after surgery (Sept. 11th 09), had emergency surgery to remove it and am now 5 treatments out of 8 into chemo.  I have no idea when I will be able to get a new TE placed if at all because my diagnosis changed after my BMX once we found out I'm triple negative.  I was told by my BS at the time that I wouldn't need rads so I had the immediate recon.  Now I'm told that I may need rads due to the triple negative status.  I haven't even talked to my PS because she was adamant that she won't do TE's on people who have had rads.  I am almost to the point of not caring either way anymore.  I have lived without breasts for 6 months and as of right now I'm at peace with it.  I haven't had the conversation with my husband to see if he would care one way or the other.  I think he would be supportive and say all of the right things but not necessarily how he really feels.  It's kind of funny when I look back at it.  I was SOOO devastated when the TE failed.  Now, I'm SOOO over it.  If I have to do rads, I may just find another PS and wait the year or so to let my skin heal and then decide if I really want new breasts.  I was small chested before and I only wear foobs at work because I deal with rich customers who would be put off by some poor schmo that lives in the real world and has to deal with something as unpleasant as cancer.  EVERYWHERE else I go flat chest commando.  My friends and family know the score and don't give it a second thought.  I guess time will tell.  I'm sorry you are depressed about your ordeal but it's your ordeal and you will eventually come to terms with what's important to you and that may change several times before you come to a decision.   Hang tough and good luck.

Dee    

AnneW

Crystal,

Are you SURE you "don't qualify" for any other kind of recon? Many thin women with athletic builds still have enough fat for a bilateral SGAP, hip flap, or stacked flap procedures.

Was it your PS who told you that you didn't qualify, or one of the surgeons who actually does the surgeries?

I ask, because my PS at University Hospital said I didn't have enough fat. And I'm now the proud owner of two full B cup breasts, courtesy of my own body.

Feel free to PM me if you wish.

Anne

dancer51

 Hi, I also lost an expander during chemo.  I was devestated.  I waited until after rads and chemo and gave myself a few months of recovery time.  I did some research and found a surgery called a DIEP flap and a surgen qualified to do it.  I had it done and am extremely happy with the results.  It is my own tissue and skin.  I hope I've been of some help.  Good Luck

cd1234

Hi Anne,

My PS did tell me that he could try the DIEP flap?? The one where they take the muscle from my back. But that he did not recommend it for me.  My oncologist (who I trust very much) told me not to do anything. She said I would just be in for a long time of pain and surgeries. 

Thank you for the reply. 

AnneW

Hi, Crystal, the flap where they take back muscle is a lat flap. TRAM is the belly muscle. I agree, stay away from either of those if you're super-active.

It looks to me like you're in a quandray--facing lots of surgeries regardless. Or facing the fear of rejecting an implant, chronic infections, etc.

I have found that most doctors won't recommend what they don't know about. And most--esp in our area--know little to nothing about DIEP or GAP flap surgeries. Yours may. But they see it as a horrendous string of surgeries. Those of us who've had it see it as a process to get breasts made of our own fatty tissue.

Good luck from your Boulder neighbor!

Anne

Linda54

Crystal

I have bi-lateral Lat Dorsi flaps (from the back) and I am a very active person and this type of recon has not affected anything that I do.  I have heard that if you are an avid rock or mountain climber or water ski then the LD flap are not for you.  Also if you are into body building I would not recommend this surgery. I am a runner, biker, do strength training and I garden and do all sorts of "active" things.  Everyone is different.  Some have more problems than others with the different types of reconstruction.  So I cannot say that this surgery would be without problems just because I sailed through it flawlessly. Just like with the Gap and Diep recons, noone can say those would be better for you just because those are your tissue.  There are always risk that we take with "all" recon procedures.

Of course I would have rather had all my own tissue (I was dealing with a prior (23 yrs) radiated side) but it was not to be for me because no PS in my network...also $$$$ and traveling....

If the autologous tissue flaps would be an option for you then I would surely check them out. 

So sorry this has happened to you. take care

REKoz

I am so sorry this happened to you. I have also had recon infections; the first right after my bmx..HORRIBLE but expanders were saved by IV Vancomyician and Zyvox oral anitbiotics. Had to have one expander replaced due to placement and recovered very nicely from that. I am now experiencing a post op infection from exchange on Dec. 22. Back on Vanco but not nearly as threatening as the first infection. This has been a 17 month process that I was completely unprepared for. However, there is just this innate feeling in ME that I want to have some sort of chest and I am determined to do what I must to see this through.  I hear from what you wrote that you might be just as happy without them. I feel for you. It's a tough call and a very personal one.

Perhaps give it some time too process all that has happened to you in such a short time. A decision does not have to be made immediately. You could get a prothesis(sp) to even yourself out which will give you an idea of how that may feel if you want the look of breasts. It is possible to have a successful outcome with expander replacement but it does take a committment. I think time is one your side right now...take it and see how you feel a couple of months down the road.

I wish you the best of luck in your journey...I have surely learned that I had much more in me then I ever thought. Still learning alot about myself at 54!

xoEllen

roseg

Was the side that was removed radiated during your original treatment? In my experience that increases the chances that you'll suffer complications. If it was radiated then I'd consider a lat flap. It sounds worse than it is and most people are happy with the result.

 If it wasn't radiated then I think I might consult another plastic surgeon. You had an infection, which is sometimes caused by bacteria introduced during surgery.  Your PS wants you to think that the rejection is YOU, but it could well be HIS or HER surgical technique/error and/or problems with the hospital.

 Plenty of people lose an expander, do a course of antibotics, wait a respectable amount of time and have success their second time around.

I would go ahead with the side that's OK. As you get expanded you'll find that having a fixed breast makes dressing easier, even if the other side is still a prosthesis. However I think I would consult with someone else as well.

samiam

I had an that infection manifested itself as warmth and redness of the right breast soon after my double mastectomy and expander placement.  I took a couple of rounds of oral antibiotics and it appeared to get better, only to get worse a little bit later.  I was undergoing chemo and a low white blood count was blamed. I was then put on IV antibiotics; but when there wasn't an improvement in a couple of weeks, my PS said the TE had to go.  I then waited 7 months to have it replaced.  I bought a prosthesis (kept the left TE in place) for the right side and went on about my life.

Fast forward to July 09. The TE was replaced.  All was fine for a week and you guessed it -warmth, redness, and a low grade temperature.  This time we took no chances.  I was sent immediately to an infectious diseases Dr. and put on IV antibiotics (Cubicin) for 6 weeks.   At my request, I was  given Cipro to cover for a gram negative infection and an antifungal for a fungal infection.  (They weren't able to culture anything to determine the exact type of infection so we covered for everything.)  While some people may have considered all of this overkill, neither my PS nor I wanted to take chances.  The heavy duty antibiotics worked, the infection was cleared.

I was devasted when I lost the TE and with having to wait 7 months to replace it.  At the time it seemed like that it would be forever.  The time actually went by pretty quickly.  I had my exchange surgery yesterday and am now the proud bearer of nice quishy silicone implants.  My journey has been longer than others ...  but to me it was worth it.  

I wish you the best in your decision making process. 

ChrissieD

Hi Crystal,

Find a surgeon who specializes in DIEP / flap procedures and talk about your options.  This dr should be a microvascular surgeon.  A lot of PS will only give you options they can perform and many do not do flap procedures.  I ended up with implants but my PS is a DIEP expert. He was very honest with me about pros and cons to DIEP.  He did not recommend a lat flap because of my age and lifestyle. 

Good luck to you.

Suze

Hi Crystal

I'm sorry you're going through this. 

I lost my final implants to infection about this time last year, and I think it's taken me all of that time to come to terms with it.

I found it so hard to be totally 'flat' at first, but am pretty relaxed about it now (with prostheses). It's all the harder because you are so sick, as well as having to go through all the emotional upheaval. I didn't get back to work properly for about 4 months (mind you, I had so many diff kinds of abx and nothing worked so I was awash in drugs and just wiped out by the end of it all).

 I took both out because I didn't want to be lopsided. I am now due for a DIEP reconstruction in a few months. I can't have implants again b/c they are still not even sure whether it was an infection at all - or some sort of inflammatory reaction. 

 You really should explore other options, they are doing amazing things now beyond implants. But give yourself time. It takes some getting over, what you're going through, and the thought of going through it all again can just be daunting. 

AnneW

Suze, where are you going to have your DIEP done?

Anne

cd1234

Thank you all for the information and advice. 

Suze

Hi again, Crystal - hope you're doing OK with it all.

 I decided on doing the DIEP at home in the end, Anne - I met somebody local who has had the same surgeon, same procedure, and she's doing great, plus just couldn't find a way to make the travel thing work, esp long haul with surgery of that length (I'm a 12 hr flight away from even LA). 

How're you doing? 

kcshreve

I recently had a DIEP procedure in New Orleans with Sullivan.  While there, I talked to the nurses about the various techniques, and she told me how many of their clients come there because other doctors told them it couldn't be done.  Don't overlook asking these doctors what they can do (Sullivan, DellaCroce) - Christine

tabby

Crystal:  Sooo sorry you are having to go through this.  Believe me, I understand as I currently have an "infection" (put in parenthesis because I had infection the first reconstruction attempt but even after removal nothing cultured probably because of all of the antibiotics).  My "infection" however only gives me redness--no fever or anything, although it is pretty tight with fluid and it's redder at night than in the morning--DRIVING ME NUTS!  Anyway, this time I was not red until 3 weeks out and only on the left side.  If you'd like to try again, maybe give it as much time as you can.  My plastic surgeon wanted me to wait 6 months to a year after the infection the first time.  He also told me the second time would be the last time he can do reconstruction this way.  I don't know if that's true or not but now what am I going to do if he has to take this left one out?  That's the question I asked him, "what am I going to do with one boob?"  Anyway, you are in my prayers.  I know this is hard.  I am a Christian woman and have turned this over to the Lord after everything I can do for this problem is much bigger than me--it's been my avenue to peace.  You will make a decision that's right for you--try not to worry.

labweb

I see that this thread is 6 years old, but I am new to the world of breast cancer. I was recently diagnosed and had a bilateral mastectomy. Now I have lost the right tissue expander due to skin necrosis. Poor blood flow, lack of oxygen to edges of incisions. Had to have right one removed completely. I have been on antibiotics constantly since mastectomy. Continuing to run a low grade fever. PS called it a setback but that we would recover. We are waiting for skin that is left to heal before anything else will be done. In the meantime what do I do? I can't even face opening my bra drawer much less looking at myself in the mirror. My granddaughter's first birthday is in 2 weeks. First very public outing with friends and family. Very depressed.

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