Too much tissue removed? Pain and mutilation

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Randie
Randie Member Posts: 2
edited November 2017 in Surgery - Before, During, and After

I had genetic testing done because of my family history and found i am BRCA 1 positive. I had kidney cancer almost 3 years ago and because of the size of the tumor, had my left kidney removed. It was a horrible experience and I never want to go through the shock of cancer again. So when I found out I could drastically reduce my risk of breast cancer (had a hysterectomy years ago), I decided to have a bilateral mx with reconstruction. I adore my husband, children, and grandchildren, and when I was diagnosed with the renal cell carcinoma, the thought of not seeing them grow up was my greatest sorrow. I felt empowered that this I time I had some control over cancer.

So I had surgery 8/29 to remove breasts and add TE and an alloderm flap. My left side went fine - but the BS removed so much tissue from my right side that I am concave with places that stick out with sharp pieces of I don't know what. I have so much pain and pressure against my rib cage. Because so much tissue was removed, the skin didn't have enough vascularity and I got a wide area of skin necrosis on either side of the incision. Now the ball of tissue under my arm has gotten bigger and is so tender. I literally have constant pain and am 3 weeks out. My PS doesn't want to start adding air to the TE yet because of the revisions he has had to make to the incision to remove the dead skin, but there are huge gaping holes that hurt. I am starting to become an emotional wreck with long cries in the shower.

I am also feeling guilt about my journey because I don't have cancer and cant imagine if - like most of you - I had to add that crisis to the mix. Thank you for listening - there's really no one I feel I can talk to.

Did anyone have the same experience with "too much" breast tissue removed and issues with TE becasue of it? Or am I crazy?

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Comments

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited September 2017

    You're definitely not crazy. Please don't feel guilty! You've already had cancer and you're going through this to have the best possible chance of not walking that road again.

    I'm not sure if there is a "too much tissue removed" mastectomy. They do try to remove as much as possible and it can be shocking to realize how much that really is. Keep in mind that there is a period of adjustment and you just had a big surgery.

    I remember having a week or so of utter dismay - worrying that I had made a terrible mistake. Your body has gone through a lot! Give it some time to heal. I know first hand just how hard that is to do. I started to feel so much better about the 6 week mark.

    That said - if things seem to be getting worse then you should contact your PS.


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  • MTwoman
    MTwoman Member Posts: 2,704
    edited September 2017

    So sorry you're going through this! I agree with NotVeryBrave, unfortunately you don't actually get the risk reduction if they don't take as much breast tissue as they can; so you would only think that you had the risk reduction and future imaging (and, thus early detection) is much less likely. Do continue working with your PS if things aren't improving. I remember after my mx, it was a bit shocking. I couldn't have my TEs placed during mx surgery due to a rather large hematoma after my initial lx. So I was flat on only one side for a couple of months (until it was healed enough for another surgery). I know it's hard, and I'm sorry you're having so much pain. You're not crazy, or complaining, it can be a difficult adjustment made even harder by healing issues. ((hugs))

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  • Bosombuddy101
    Bosombuddy101 Member Posts: 182
    edited September 2017

    Randi,

    I recently had a bilateral mastectomy with no reconstruction, and I am absolutely certain there shouldn't be large gaping holes. I'm no doctor, but wouldn't this be a breeding ground for infection? It sounds absolutely horrific! Is you P.S. aware of this?

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  • Randie
    Randie Member Posts: 2
    edited September 2017

    Thank you ladies, for responding and making me feel like I am not in this alone. I met with my PS last week and he explained (why do we have to do so much research to even know the right questions to ask?) He explained that my BS had removed my breast tissue so close to my skin that the blood vessels that feed the skin had been compromised. In other words, my skin is paper skin on one side and that is why all of the limps and bumps and creases of the unexpanded TE are visible and painful. The "caves" I mentioned are skin covered, but look like deep holes that I can actually stick my finger in up to the first digit of my finger.

    I have found that sleeping on my back with my right arm elevated on a pillow helps some of the pulling and pressure on my skin. My PS is hoping that when he is able to start inflating the TEs that this discomfort and "shark bite" look will get better.

    I am just trying to get through this one day at a time.


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  • muska
    muska Member Posts: 1,195
    edited September 2017

    Randie, I am sorry you have to go through this and especially sorry you are going through this in the absence of cancer diagnosis. What is done is done but the breast surgeon should not have removed so much tissue unless there was a specific reason for concern.

    I had similar surgery to yours. A little more tissue was removed on the cancer side but at no point in time I had to worry about paper thin skin or necrosis. No revisions were required. The pain was quite tolerable and all I took after discharge from hospital, was tylenol - only for a week. Please work with your PS and seek other opinions if pain and discomfort don't go away soon.

    Best

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2017

    randie - I also had a very extensive bi-lateral mastectomy and developed skin necrosis - on incisions and across the front of the "breast" area. Sometimes this happens with thin skin, thin pectoral muscles, bad luck, or too much pressure from the expander, essentially squeezing or pinching the skin and making establishing new blood supply to the area more problematic. I would advise several things to discuss with your plastic surgeon. Ask about using Silvadene cream to help generate new skin thickness. Also ask about having some fat grafting done in advance of expansion to help with skin integrity and new vascularity. This is now being done on radiated skin with success - it really does help in many cases, it was a small miracle for me. Also you might start supplementing with bromelaine and zinc to help with healing and increase your protein intake to 100g of protein a day. Smoothies or shakes with protein powder and Greek yogurt are good and easy sources or protein, as well as the usual suspects - meat/fish/poultry/eggs. Wishing you the best.

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  • swg
    swg Member Posts: 461
    edited November 2017

    I am so sorry you're going through this. I can say, I had Silvadene cream when I suffered burns from spilling boiling water on myself..and it is the greatest thing ever. It's nice and cool and soothing. Also has antibiotic qualities.

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  • sm627
    sm627 Member Posts: 298
    edited November 2017

    Randie,

    I am sending you lots of hugs and Love! I understand what you are going through I had a UMX right, and a lot of my breast tissue had to be removed because my tumor was huge 17cm. I have curves and puffy skin with lots wrinkles. My BS is going to make revisions at some point when things heal more. You are so brave and strong you beat cancer ones and now you have taken control to make sure new tumors don't show up. What I am learning is that the road to physically and emotionally recover from a mastectomy is sometimes long with lots of challenges along the way.

    Wishing you the best in your journey and hope things smooth out soon.

    Hugs,

    Sara


    DX 5/30/2017 17cm Borderline Phyllodes Tumor

    Surgery 6/27/2017 Mastectomy(right)

    Hormonal Therapy 9/25/2017 Tamoxifen
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