Triple negative breast cancer

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Hi, I’ve recently been diagnosed with tnbc and had ct scan and full body bone scan which shows no spread. Then I had to have a pet scan.  Has anyone else had to have this after other scans were clear.

thank you.

  • Hi Shorty13

    I've recently been diagnosed with TNBC too and was not offered a CT or bone scan, just MRI. It's great that yours were clear! Can only be a good thing can't it? I'm now wondering why I haven't had those additional scans Thinking xx

  • Hi, thanks for your reply.

    how big is your tumour and has it gone into the lymph nodes under your arm.  Maybe that’s why you haven’t had so many scans xx

  • No worries, you might be on to something there. My tumour is 2.4 x 1.8 so not massive but still, a decent size.Confounded They did note "lymph nodes not suspicious" on my notes which may be why but Im not sure how they can be totally sure about that with the few scans that have been done. I'm sure there's a good reason for it, there's just a lot to get you're head around isnt there and I find myself questioning stuff! Xx

  • Yes so much to get our heads around. Very anxious time too.  Have you started treatment yet? If so, how are you coping xx

  • Absolutely!! My head is all over the place, sometimes I'm in battle mode and everyone marvels at "how well I'm doing" and other times I just burst into tears for no apparent reason! I have start ledConfoundedtreatment have three infusions (so that's a cycle done) of paclitaxel, carbo and pembro... Of course along with ZOLADEX (love a needle! Confounded) and those little injections you take home for the white blood cells. I'm doing pretty well to be honest. I feel a bit tired but I know that I'm getting away with minimal side effects so far. That's not to say I feel on top of the world..  I certainly don't, but I can't complain either. Second cycle starts tomorrow - fingers crossed all will continue well. How about you? Where are you in the treatment journey? Xx

  • That is good you are not getting many side effects.  I hope it continues for you.  Is Pembro the new drug for TNBC?  I’ve heard good things about it.

    im still waiting to start chemo.  Seeing oncologist on 24th June.  Seems like forever.  I am having chemo and then surgery. I keep thinking I’m getting pains everywhere, but probably anxiety.

    xx

  • It is yes, it's the immunotherapy that is now being used. Although it hasn't been used in BC for long, it's looking to be really effective. I believe you need to have certain receptors on the tumour for  it to be of any use to you though so not for everyone I don't think. You're going to be just fine on your treatment. I don't want you to worry about it at all. It's funny you should say about pain etc , before my treatment I was being sick every morning and had a real pain in my shoulder.... Turned out it was absolutely nothing to do with anything, just as you say, anxiety. ... And why the hell wouldn't we be full of anxiety for god's sake??! A couple of months ago I was doing my usual putting the world to rights at work, having a nice glass of red at the pub and planning a holiday, only to be flung into this madness and having conversations about losing my bloomin hair!!! ConfoundedConfounded

    We are going to come out of this with some serious superpowers, I promise you Wink xx

  • I hope I’ll be ok, thank you.  
    Anxiety messes with you big time.  

    I know how quick our lives can change, unbelievable.  You just keep thinking it’s a bad dream don’t you?

    Do they test you first to see if you can have Pembro. Hope I can have it.  Mine is grade 2 aswell, which is good as most TNBC is grade 3.

    xx

  • No... You WILL be ok, pinky promise! Blush

    I keep saying to my partner it's like a bad dream , that's exactly what it is! I wake up in the morning and immediately think.... Oh god, it's still a thing isn't it?! This will soon be something we can look back on and say... I can't believe that happened! Well the testing for the pembro thing I think was part of the biopsy result. They have a good look under the microscope and see what's going on, what it's made of etc. if you're not sure, give a quick call to your breast care nurse. They will fill you in.

    Yeah, I didn't realise that most TNBC is grade 3, but it seems to be very commonly the case so this is another positive thing! Xx

  • That’s exactly like me every morning. And I feel so alone even though I am not. Such a horrible feeling.

    oh right thanks, I will phone my nurse and ask her.  Maybe the oncologist will tell me about it if I can have it.

    Are you having surgery after the chemo.  Sorry if I’m asking lots of questions.  Just wondering if your consultant works same as mine xx