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Breast Reconstruction ongoing Nightmare!

joyboy63's picture
joyboy63
Posts: 8
Joined: Oct 2011

Hello everybody,

Approximately a year ago after about six months or so of receiving radiation, I got a lengthy text from a friend about this wonderful dr. that did her surgery for breast reconstruction.  She went on and on about how wonderful he was and how the surgery had helped her self image tremendously.  I, of course,have been dealing with that same problem with my self image after 15 months of having no breasts.  So I decided to go ahead and get the surgery.  This is a summary of what has happened since that decision.

I only had radiation on my right side and the dr. said it was a "good" candidate for the surgery and my left was a "great" candidate.

I had tissue expander surgery in June and everything was fine until the middle of July. I started to have a high fever and was in the hospital for a few days with staph.  I was treated by an infectious disease dr. through an IV for several weeks after that.

Around November, it looked like all was well, I was able to get expanded to the point of being ready for implant surgery.  That surgery took place on December 26th.  The Dr. went in through a different part of my breast to prevent any reoccurence of staph. 

All was fine with that surgery until February 21st when I started to have leakage on my right side (same place I had problems with staph in July).  I went into ER and was treated for staph.  My plastic surgeon took out my implant because it was contaminated and put another one in at the site I had problems with all along. 

On March 3rd I had emergency surgery due to the fact my stitches were coming apart at the problem area (this area I've been talking about is close to my armpit where I had 11 lymph nodes removed- it is a small circular wound that is very fragile with hardly any skin coverage.)

During this past week I started to have leakage again and was told yesterday that I will have to have another surgery to clean up that same area under my armpit and to have a drain put in.

I am trying really hard not to let this get to me but am wondering if this is normal to go through.  I have done some research and have seen that it is not recommended to have tissue expander/implant surgery on radiated skin.  Could I have avoided all of this if I didn't jump in on a friend's wonderful experience??

Thanks for all of your input on this

Joy

Pink Rose
Posts: 495
Joined: Nov 2012

Joy, I had a lumpectomy, but, I've read your post and I am so sorry.  I hope that someone here can post something for you that will help you out. 

I will be praying for you.

Hugs, Rose

nelliott59
Posts: 16
Joined: Oct 2009

Joy,

   I'm sorry to hear of your difficulties with reconstruction.  I had a bi-lateral mastectomy in 2012 and I had reconstruction and on one side I too had radiation back in 2009.  You have certainly had more than your share of issues. Hang in there - it has to get better.  Continue to educate yourself and, if necessary, even get a second opinion to see what another plastic surgeon may say.  I've just done that myself as I now have capsular contracture which I'm hearing happens more after you have reconstruction on a radiated breast.  I wish I had known more before I started all of this but now I just have to keep hoping for the best.  Take care.

    

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

Joy, I am so sorry that you have been through so much!  My first thought is to get a second opinion.  Any decent physician would welcome another opinion. 

My second thought (and this is not so helpful now) is that I don't believe it is wise to choose a physician based on what a friend says.  One person liking a physician is what is called anectdotal evidence, so to speak.  Not a reliable way of obtaining a respected PS.  I would choose a physician based on another highly respected physician's recommendation, on their credentials and training, on how many of the surgeries that they have performed, etc. 

Praying that you get better soon!  Big hugs!

Mariannemm's picture
Mariannemm
Posts: 136
Joined: Apr 2010

I have also had lots of complications on my reconstruction surgery with one surgery leading to another! 4 in the 1st year.  I wish now I would of never had reconstruction.  I wish I hadn't been so creedy.  I wish I would of left everything alone.  But if I had done it I would of never known, I would of always thought if I had had the reconstruction all would be great!  I nipples but no feeling, I have larger breast's like I always wanted but they are always painful.  I would love to have it all removed!  I feel like I was doing all of that for everyone else and I didn't listen to my own thoughts!  Hard lesson to learn but I won't make the same mistake twice!  Marianne

jendrey's picture
jendrey
Posts: 377
Joined: Sep 2009

I'm sorry to hear of your troubles with reconstruction.

Don't beat yourself up over this, you made the best descision you could've at the time. You only wanted to have some semblence of normalcy, just like everyone else here - whether or not they've had reconstruction. We all just want to have our lives back before diagnosis or as close to it that we can get. Having reconstruction, IMO was a step closer for me too.

Experiencing all of the setbacks with your reconstruction is, unfortunately, par for the course for me as well. I had immediate-delayed reconstruction (how'z that for an oxymoron?!!) followed by weeks of radiation therapy. Meaning a tissue expander was placed at the same time/during my masectomy. It caused a very large purple area that looked like a bruise. It wasn't a bruise. The skin was just stretched so thin over the blood vessels. The PS did away with it in the exchange surgery.

I developed a small spot about the size a pinhead that leaked fluid. My PS insisted the implant was contaminated and had to be replaced. So, it was. My PS had previously mentioned that kneading the scar will break it up causing for a smaller scar. I ended up ripping open the wound. It took about 7 months before it finally closed up. I also had to have two debridements done to the wound.

This is all directly due to the area being reconstructed having been radiated. My implant is still too small but the area has finally healed.

I've decided that I don't really want to be enslaved by the perils of an implant and have decided to use my own tissue instead.  Which is what I really wanted to do in the first place. This way, there will be new non-radiated skin and a far better chance of nipple reconstruction to look forward to. And no worrying about implant replacement in a few years, no capsular contraction to cause pain, and never having to deal with it again! (Or that is my dream anyway..!) Especially since I've gained about 40 pounds (after weighing less than 100lbs all my adult life) this seems like is a win-win.

Hope this helps.

(((Hugs)))

hope4thebest's picture
hope4thebest
Posts: 108
Joined: Aug 2012

Our situations are so individual, we make the best decisions we can at that time.  Based on the reality of each day, we sometimes must make new decisions that allow us to move forward.  I am sorry to hear about you complications, I hope that you are making some progress by now.  Sometimes our bodies reject what our minds have planned.  You tried your best, but the implant does not seem to want to be there.  We are still here and after all, that is what is most important.  If your Dr is being honest, he would welcome a second opinion.  Maybe that will help you get through this portion of your recovery.

I will hold you in my prayers, focus on your inner light.  I am proud of you for writing on this board, it will help you survive with pride.

Annie

joyboy63's picture
joyboy63
Posts: 8
Joined: Oct 2011

Thanks for all of your replies, means the world to me!

Since my post I have had surgery with a drain put in.  The PS took my expanded skin and brought it up to where my skin was fragile and did a really good job stitching it up.  I just had my drain taken out yesterday and everything is healing nicely.  I am considering getting surgery in the future where they take skin and muscle from upper back and bring over to make a breast.  My PS said that he has never had a patient like me, not sure what that means but if it helps one woman in the future avoid complications that I have had it will be all worth it!

Have a great day!

Joy

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Thanks for the update Joy!  I'm glad to know that the drain is out and that you're healing so well. 

Take care of yourself,

Kylez

littleangel65
Posts: 46
Joined: Jan 2013

I am sorry for all that you had to endure, but i am glad for you that things seem to be doing better for you, thats great news!!!  I had my right breast removed, and just had my last radiation treatment on Sept. 20, 2012, I had 33 rounds of radiation.

I am considering the idea of having reconstruction, my plastic surgeon did suggest taking the skin and muscle/fat from my upper back and moving it forward.

but, I am just sitting back and listening to women like yourself, and out weighing the pros and cons,  I am still confused as to what to do, but, who knows, I may not even be a canidate anyway, once my doctor checks me next year.

But i wish you the best this time around, you've earned it girl!!!!!

Take Care, Stay Strong

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I am so sorry too.  It does sound like you're doing better now, which I am thankful for.  Keep posting and filling us in on how you are.

Gentle hugs,

Leeza

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

Hate the drains!  I pray that you're feeling much better now.  Post an update when you can for us.

ladyred4
Posts: 2
Joined: Apr 2013

Make sure you investigate free flap techniques also.  This is what I did.  My doctor was Dr Robert Allen.  Get information on his site:  http://www.diepflap.com

 

Fortunately I was told by the first plastic surgeon that "he was not the person for me, neither was anyone else in the area I lived ... and do not believe any doctor who told me otherwise".  You will find doctors that only perform implants and they do not tell you about other forms such as free flaps that require a microsurgeon to perform (need to reattach blood vessels from the skin/fat pieces that are removed and placed in the breast area).  

jnl's picture
jnl
Posts: 3873
Joined: May 2009

How are you doing now Joy? 

 

kit kat's picture
kit kat
Posts: 56
Joined: Aug 2010

Hi I had bi lateral surgery in May 2010 with expanders. Chemo, done sept 2010 . It's a living nightmare. Expander surgery Jan 2011. By a well recondmenned surgern. The right side, the stiches came out. and floated under arm pit. That wasnt even the cancer side. Doc said it was because I had thin skin there. Went to a new surgern and she restiched me with bigger implants aug 2012. went for a check up this week, my right side stiches are coming loose a gain. I feel it .the stiches feel pointy. She said she would try that Implantyed mesh bra. If the fails, she said theres nothing else. Did I do the right thing ? i dont know Thank god fro zanex and oxy.Iw as a 49 year old healthy girl now Im a walking nightmare. Sorry but Thats how i feel.

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

Thinking of you and looking for an update.  I hope you will post soon.

Pink Rose
Posts: 495
Joined: Nov 2012

Hoping that by now, you're doing and feeling a lot better.  I don't think I could ever go through what you have.  You are amazing.

Hugs, Rose

Lynn Smith
Posts: 1265
Joined: Mar 2011

I had a lumpectomy but yesterday my sister had her reconstruction.I talked to her last night and she was of course very very tired.Tried to call her today and no answer.That's unusal but she might be sleeping/getting some rest. Call back tomorrow.

I hope things are better.I always thought if I needed a mascetomy would I do the reconstruction??? I read where many  have problems and it makes me worry and wonder.I'm 66. Told I don't look but If I ever need mascectomy I think I will pass on the reconstruction.I remember someone telling me their sister had surgery.Both mascectomy and reconstruction.Her cancer came back and there were many problems with the reconstruction.Leaking,infection etc.  I then  wondered if the reconstruction brought back the beast. 

What works for one might not work for others and like you I would be the one something won't work.That's my LUCK

Lynn Smith 

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