Tnbc mets

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i I have tnbc & brca1, diagnosed October 2020. .  I had intravenous chemo for 6 months, then a double mastectomy & reconstruction .  Then I had prophylactic oophorectomy.   6 months after the cancer spread to my brain & lungs.  I had brain Tumour removed in August 2022.  Had two gamma knife treatments over the next year.   Also developed a tumour in the soft tissue of my inner thigh which was removed and was also tnbc, which my oncologist said is rare. I was put on chemo tablets called Capecitibine, These did not work and my lung tumours increased.  I had 6 intravenous carboplatin chemo, this did show some response.  Then in October 2023 I started on olaparib and these have kept my brain & lungs stable so far.
 have just found another lump in leg, which feels the same, as the first one I found and is just below the scar. I am waiting for consultant to call me back.  Anyone else had tnbc spread to leg soft tissue? 

  • Hi again

    I'm just 'bumping' this post back up to the top of the discussion list for you.

    How did you get on with the phone call from the consultant?

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  • Hi

    still anxiously waiting for call back regarding new lump.  I was told my regular consultant is on holiday so another consultant was going to advise x

  • I hope you don't have too much longer to wait.

    ((hugs))

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  • Your story sounds so similar to mine. Except the lumps I have found in my skin haven’t been diagnosed, I’m just sure that it’s spread there too. I have tnbc, had a single mastectomy, 6 months iv and radio and then diagnose with secondary to the liver, lungs and a small brain tumour. The lumps I’ve got are in my armpit(not the side of the cancer), underneath my breast, stomach, and now my chest. I’m not sure it’s that of course but will be seeing my oncologist tomorrow. I’m guessing with anything relating lumps popping up, they can appear anywhere? 

  • Sending best wishes to you.  I hope it’s nothing too serious xx. The lump I found in my leg was just scar tissue xx

  • I’m really glad to hear that. I’m off there shortly so will get their opinion but because it’s so spread out I think it’s likely to be skin mets. Hope you’re keeping well x x