Tnbc brca1 mets

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Hi all, 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  

    I haven't been in your position but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list.

    I can see that you've also posted this question in the secondary breast cancer forum where you are more likely to connect with others whose breast cancer has spread.

    While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • Hi there,

    I have tnbc also, and had 6 months of chemo, then lumpectomy in January, and 21 rads finishing up in March.

    Just had MRI results yesterday, showing a lesion on my sternum, very upset about this but Onc says hang

    in there we will order a CT and get a better look, MRI isnt the best way to see bone lesions.  So my Ct

    is next Tuesday and we go from there.  I hope if I need more treatment that there are good meds out there!

    I am also on Capecitabine and not sure if its doing anything, I am on cycle #4 out of 8.

    I see you are on olaparib, and its working for you thats terrific!  You are doing a great job staying on top of things

    and listening to/examining your body.  We all need to do that regularly 

    Cindy

  • Hi, good luck for the ct scan.  It’s a worrying time.  I see my oncology tomorrow to check my thigh as I think I may have a new lump or maybe scar tissue? Fingers crossed.  Olaparib seems to be doing the job for me, been on it 9 months now & it’s keeping me stable. I have started having the odd left side chest pain/twinge which I will tell my oncologist tomorrow.  Take care xx