Breast tissue growing back?

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Whateverittakes
Whateverittakes Member Posts: 43
edited November 2018 in Surgery - Before, During, and After

had a BMX with skin & nipple sparring in June 2018, July the left nipple & skin flaps died & had to be removed. During all this time I was unable to take any of the tamoxifen I was prescribed due to the risk of DVT'S. Flash forward about 3 weeks ago, I broke out in a horrible rash from my chest up that I still currently have. At this time of the ultrasound I didn't have a lump.i was told all clear just scar tissue. Then I became really sick about a week and a half later, rash becomes worse & painful, shooting pains in the left breast side. I went to the hospital knowing something wasn't right. I was givin a biospy due to the lump growing so quickly. It's feelable, and you can see the perfect lump through my clothes. Its also my original lump that sent me to the hospital the first go aaround. Im awaiting the results. Mean while the Dr. Failed to tell me when he ordered the ultrasound he SAW my breast tissue was growing at a rapid rate! At this point I have in my mind, was the first diagnosis correct? Do I have IBC? No skin biospy had been done prior. I was completely unaware of the breast tissue growing back, especially this fast! Any info on this subject?? Thank you for your help. SA

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited September 2018

    Whateverittakes- it sounds like you’ve had a really rough few months. I'm so sorry you don’t have all the answers yet that you need, although it sounds like you may have have them soon. This is always the hardest part of the process - waiting, wondering and worrying.

    I’ve never heard that breast tissue can grow back though - that not only confuses me but concerns me too. Isn’t the reason we have mastectomies to get rid of the breast tissue to prevent further cancer? And while I understand no surgeon will guarantee they’ll get every last bit of breast tissue, whatever amount is left doesn’t regenerate and grow back. Could the doctor have meant the tissue in the breast area was “growing” as in swelling or enlarging, maybe?

    I hope you get answers - and pray it’s not a recurrence. Will keep you in my thoughts - please let us know how you’re doing.
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  • Whateverittakes
    Whateverittakes Member Posts: 43
    edited September 2018

    Hello NancyHB, thank you for your reply. I made myself very clear in asking my surgeon questions because I was so confused. He said it's very normal for the tissue to grow back. Normally it takes years!! I was very clear asking was it the old tissue, was it enlarged he stated no unfortunately it's grown back & can grow back at any time. I also had my BMX believing my tissue won't grow back, the thought never crossed my mind he stated it was new tissue that had been growing for about 3+ weeks. My next step is see my oncologist today & see what she recommends then we go from there. He also stated the tamo would have helped kill off the cells, but don't believe mine has worked at all. I found it all strange, I just recently faught a huge battle I'm not prepared but if I have to I will get prepared. I know all the ladies on here have more experience, that's why I asked this question. It's terrifying to me knowing what I went through then bam it just comes back??

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited September 2018

    I've never heard of breast tissue "growing back" after mastectomy. That seems really weird.

    Did they do a skin biopsy for the rash? Any results on the biopsy of the tissue yet?

    Please keep us posted. I hope things are soon resolved.


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  • Whateverittakes
    Whateverittakes Member Posts: 43
    edited September 2018

    Yes, biopsy on the skin for IBC & a biopsy on my lump. I find out today at 11 when I go see my oncologist. He stated some breast tissue was left after the BMX and that will not generate back. This is new breast tissue that has grown. I also have a few auto immune disorders. He looked just as baffled. He did say this it not unusal for it to regrow, he has seen cases. I'm suppose to get my results today & I will update yall. I've always wondered about IBC due to having the symptoms the first time around. Alot was ignored due to my age. I first started complaining in my late 20s by 31 I was diagnosed with IDC & DCIS. Pathology also stated lobular in the left breast. Thank you for all your comments. I will be asking alot of questions at my appointment. Thank you SA.

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited September 2018

    Whateverittakes, I had a similar experience, but mine was skin metastasis of my original IDC.

    Hope you get good news today, please keep us posted.

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2018

    Any news Whateverittakes?

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  • Whateverittakes
    Whateverittakes Member Posts: 43
    edited October 2018

    Unfortunately I've been offline for a few days I'm sorry to those I had waiting. Yes, I'm off the tamoxifen for a month due to the reaction, my original tumor location is currently back. I had to be retested for FISH since noone could confirm a HER2+or- in my original pathology. We thought I was negative until I was reading my own reports and ran across where I scored 3 different scores. I've pulled all my records but was asked to wait to see my ONCO again on Nov 1. I don't have any of my biopsys yet & I'm still suffering from a rash that starts on my chest goes up my neck face & arms.the ones on my chest sometimes turn purple & my nipple is still white almost ashy looking. If anyone has suggestions I'm all ears! I feel like I'm just a number slipping through. 😢 Best wishes SA

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited October 2018

    Whateverittakes, when you say your original tumor location is back, does that mean that the original tumor is back and in the same place? If so, I'm sorry to hear that. I had my cancer come back locally twice. It's been a rough road, but I transferred to a better cancer hospital and they got things under control. If you haven't already, I hope you can see someone at an NCI designated cancer hospital. For me it made all the difference. See: https://www.cancer.gov/research/nci-role/cancer-centers/find

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  • Whateverittakes
    Whateverittakes Member Posts: 43
    edited November 2018

    Thank you, yes it has only in the left breast the one I had cancer in. I've just recently got some new diagnosis's as well

    Thank you for the link I'm going to look at it

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