IBC and Reconstruction

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amykins
amykins Member Posts: 21
edited September 2014 in IBC (Inflammatory Breast Cancer)

I was diagnosed in June 2012 with IBC and I had 6 rounds Chemo, had a Mastectomy and then 44 treatments Radiation. This past fall I asked my doctors about reconstruction and they all gave me a green light to do it. But my Radiation doctor warned me that the plastic surgeon my have a hard time with me because of the radiation damage. I found a plastic surgeon who seemed sure she could fix me but she would not really know until we got into surgery. She gave me my options.It took me a few months to decide what was best for me and I decided on the Tram Flap. A month ago today(April8) I went in for to get a new breast and movement back in my arm which I lost some due to the radiation. My surgery was 6 an half hours. My doctor did have some trouble because of the damage but I came out with a breast and was told that I got a little bit more movement in my arm. The next day is when things started to change. I was so out of it and my mom was there who was a retired nurse. She never left my side. I don't really know who noticed it but I was loosing a lot of blood. My nurse and my mom watched me closely and I made sure that I stayed pain free with the pain pump they gave me. So on April 10 I go back in to surgery for an hour and she stops the bleeding. I almost had to have a blood transfusion. So when I came out of that surgery I had half a breast and a wound vac. My hospital stay was longer. I still kept myself pain free the best I could but I was not eating and I was talking to people who were not there. I had friends come by but every thing is a blur. I got out of the hospital on April 15 the day before my birthday. I went home with the with half a breast and a wound vac which was suppose pull fluid away from that area so my doctor could go back and close the area. Well that never happened last week on April 30 I went back for an hour surgery and again I almost had to have a blood transfusion. My doctor had to trashed most of the work she did. She as able to leave the muscle and some fat. I still have a wound vac but it is pulling a lot of fluid already. Once the area looks the way my doctor wants it we will do a skin graft and let me heal. I am getting close. If you are thinking about reconstruction and you have had IBC do your research ask as many questions. I chose to not hear about  all the complications that could happen. Because I didn't want those thoughts in my head. I do feel blessed to be a live. I am disappointed that my breast could not make it but I do have a flat belly and some more movement in my arm. I really sucks to have gone through all of this and still not have a breast but I am a live and that is what matters the most. 

Amy

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  • Faith316
    Faith316 Member Posts: 2,431
    edited May 2014

    I am so sorry that you went through all that and your outcome was not what you hoped.  Thank you so much for sharing your experience, however.  It will most likely help someone else who is thinking about reconstruction.  Take care.

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  • amarantha
    amarantha Member Posts: 457
    edited May 2014

    Good grief. That is appalling you had to go through that. I hope you feel better soon. Meanwhile, if and when you are given a good explanation of how/why this failed, I'd be most interested.

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  • amykins
    amykins Member Posts: 21
    edited July 2014

    UPDATE!! I finally got rid of the wound vac after having it on for a little over 2months. I even gave it a nickname little f@@ker or what some of the nurses started calling it LF. I hated that thing. On June 27 I went in for my 4th surgery. This one was to close me up. The doctor did a skin graft. She took skin off the top of my thigh an placed it over the hole where my right breast use to be. I am still healing but got the green light to go swimming this week. I want to but I am nervous. I am still doing dressing changes twice day and have to pack gauze in 4 small places. One of the place I am worried about is the small hole in my armpit. Going through this part has been harder then finding out that I had cancer and went through all the treatments. I still haven't asked what happened, why I bleed. But I am getting to that place where I can ask. I do feel a bit more deformed now. At least before I didn't have a hole in my armpit.I have also lost over 35lb. most of it was because of the tummy tuck but the rest is because I have not had an appetite. Which I am slowly getting back. I am so ready to be done with all of this. I hope next week I find out when I can go back to work I have been on leave. I have been very blessed to work of a company who will stand by you through cancer and a failed reconstruction. That also goes for my husband too. I don't know what I would have done with out all the love and support I have been gotten from friends and family. When I find out what went wrong I will let y'all know. All one can do is take it day by day. 

    Amy

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  • amykins
    amykins Member Posts: 21
    edited July 2014

    So I asked my doctor what happened why did I bleed. She said I had so much radiation damage. That the area was so tight and she thinks that I had a blood clot that burst because of how tight my skin was. I am going to go see my breast surgeon who did my mastectomy tomorrow and get her opinion. I was also told that  because of the radiation is the reason why I am healing so slow.I think having 4 surgeries in a small amount of time don't help either. I will keep you ladies posted.

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  • Meadow
    Meadow Member Posts: 2,007
    edited July 2014

    Amykins thanks for the update. My Plastic Surgeon is very pro tram, I just couldn't get comfortable with it. I had a one step procedure, with an implant at mastectomy. My rads caused some tightening of tissues and encapsulation. I am told I will still expierence changes for another 4 months or so. So far it isnt so severe to cause me to want another surgery to fix it. But maybe down the road. 

    Like you, with the IBC diagnosis I am super thankful to be here. I have to resist the desire to tweek my recon. Sometimes things turn worse with more surgeries, not better. I am just taking it literally one day, one week at a time. Life is sweet even without the ideal boobs.

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  • amykins
    amykins Member Posts: 21
    edited July 2014
    Another Update:

    So I went to see my surgeon that did my mastectomy for second opinion this week. I am so glad I did. She suggested I go see this other PS and not go back to the original PS. I have already called and got an appointment the new PS. Also I have requested a copy of my file from the other PS and canceled my appointment. I will keep you ladies updated. My thoughts now are do I want and/or need to talk to a lawyer.  

    Amy


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  • amykins
    amykins Member Posts: 21
    edited September 2014

    Thank you for your replies.

    Hey here is an Update. I am still healing. I have three holes
    that I am still having to pack gauze in them once a day. I have seen 3
    of my doctors my surgeon who did my mastectomy, oncologist and
    radiologist. All 3 used the word to describe my situation " This is
    Fucked up"and yes they said Fucked up. I have seen the new plastic surgeons twice now.
    I am looking at calling a lawyer. I am overwhelmed. I can't work in the with open wounds and asked if
    there was any work in the office for me to do. They said they would keep
    me in mind if anything comes up. They have been great this whole time
    but I really don't know how much longer they are going to be able to
    keep my job open for me. I started physical therapy on Thursday. I will
    have to go 3 times a week.Which is way more then I had to do before.This has set me way back. I am so sad
    and angry. I am looking into some support groups. I am trying to take it
    day by day. I will keep you posted.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2014

    Hi Amykins

    So sorry to read of your troubles and hope the wounds start to heal over soon.

    Our best wishes.

    The Mods

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited September 2014

    Amy,

    I'm glad you found a PS you can trust and that you are healing from all of this.  I was not able to have bmx until my onc cleared it, which was a year after chemo. I chose the simplest route for quick healing, which were gel implants.  I did not have radiation on the breast which most ibc patients have.

    I hope you heal well and get more movement back.

    Terri

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  • bride
    bride Member Posts: 382
    edited September 2014

    Amy,

    Applying for SSA Disability would probably work in your case. But, although IBC is on the SSA's compassionate allowance list (which means you get adjudicated first), you might hit some snags. The most obvious one is that you're not currently being treated for IBC. Still, I think it is worth a shot. Getting Disability is an arduous process - a process with many pitfalls. Most of the pitfalls concern what the SSA calls residual functionality. Assuming the SSA won't accept your claim on the basis of IBC, you'll have to learn how to understand and speak SSA speak. That's hard - for example, the SSA will ask if you can drive a car. If you answer yes, you're not disabled. I'm on Disability, not because of IBC, and I've been aiding people applying for benefits for several years as a volunteer at my local disability center. I'd be happy to help you in anyway I can.

    Please note that I'm not a lawyer and have never received any money for helping any claimant. It took me 2 years to win my case and before I became disabled I was college professor. I started volunteering because I realized that I was lucky enough to have skill sets that others didn't. I have no doubt you could easily win your claim on your own. But the process is a royal pain and you already have more than enough to deal with - if I can help in any way, I'd be glad to do so.

    Hoping you heal well

    bride

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  • amykins
    amykins Member Posts: 21
    edited September 2014

    Thank you all for your replies. Things are starting to get tougher. I am having to pretty much quit my job. Which means I am losing my insurance.I have been very lucky my employer has been amazing but things are just getting to expensive for them. It is a small company and they can't afford to keep taking care of me. I am very sad to leave but I know that when I am healed I can go back if I want too.  I have call a few lawyers and waiting to hear back. There is someone at the hospital that can hopefully help me with disability stuff.  I go back for another visit next week with the new PS. I am still packing the three holes everyday. It is healing very slowly. I am overwhelmed and not sure what to do some days. I think I am moving into the angry stage though. Thank you so much again for support. It is what keeps me going. 

    amy

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