Just diagnosed triple negative

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I just had my diagnosis of triple negative last week ,didn’t understand what that meant at the time but found out it’s a more aggressive cancer, scared myself by looking it up on google. The cancer has moved to lymph nodes . Been told it will be chemo, operation then radiotherapy by consultant Had MRI scan on Saturday and awaiting oncology appointment. Feeling terrified and overwhelmed. 

  • Hi  

    I was diagnosed with TNBC last April after a routine mammogram. I had a lumpectomy followed by chemotherapy and radiotherapy and finished all my treatment a couple of weeks ago.

    I found the best way of coping was to just concentrate on one thing at a time. So, in my case, that was surgery and recovering from that. Then, when I moved on to chemotherapy, I just concentrated on getting on with that, etc.

    You'll probably find that once you get started with treatment you won't feel so overwhelmed. If you want to ask me anything about my treatment then please do. You can also click on my username or profile picture to read more.

    x

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  • Thank you for your reply. It’s the acting that’s hard in between things hoping that when I see the oncologist I’ll have a plan to work with , waiting on appointment. 

  • I’ve just read your story-you’ve had so much to contend with! But you are getting through-day by day seems to be the message I’ve picked up from read in lots of posts. 
    Can I ask how long it was between tests/diagnosis/mri/ct scans and first appointment with oncologist? X

  • Hi Trakker

    Welcome to the forum and sorry to hear that you have been diagnosed with triple negative breast. I was diagnosed with triple negative breast cancer with lymph node involvement and had chemo, surgery and radiotherapy over two years ago and I am in remission for nearly two years now.

    Wishing you the best of luck with whatever treatment your oncologist puts you on.

    Best wishes

    Daisy53

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  • I was lucky and saw the oncologist only about a week after getting my results from the surgeon after I'd had my lumpectomy. I was originally told that I would see the oncologist 2/3 weeks later but the hospital rang to say they'd got a cancellation and would I like it.

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  • Thanks for your reply, I’m so pleased that you’ve come through and are in remission. It’s hard managing the waiting, Consultant has outlined chemo, op and radio therapy but said it would be oncologists final decision. I’m waiting on appointment to see one. Just praying it’s not spread to anywhere else. Had mri and ct scan-hoping that’s just procedural for all patients? Tried to ring my key worker nurse to speak to her yesterday but no call back as yet. Just waiting…

  • Sorry you find yourself here. I was diagnosed with TNBC last February. Unfortunately despite it not being in my lymph nodes, it had travelled via my blood stream to my liver. I found this out somewhat later as I didn’t have any baseline scans for what was thought to be an early stage TNBC. Had a lumpectomy, 24 weeks of chemo, 5 days of radiotherapy, and finally a microwave ablation of the liver tumour. I am now on a 3 monthly scan and see routine, with Pembrolizumab immunotherapy plus more chemo as the next act if needed.

    Some, but not all TNBC, has a protein called PD-L1 that enables it to hide from the immune system. So a type of immunotherapy drug called a checkpoint inhibitor can help chemo work more effectively for people who have this protein. There are a couple of immunotherapy drugs now authorised for early stage TNBC meeting various PD-L1 thresholds. If I were you I would be asking the oncologist whether you have been tested for PD-L1 and whether you are eligible for Pembrolizumab or Atezolizumab aliongside your chemo. I wish it had been available for me a year ago.