Triple negative diagnosis halfway through treatment

  • 7 replies
  • 281 subscribers
  • 947 views

I was diagnosed with Stage 3 breast cancer in March 2022 and from the biopsy my team.felt.that I had oestrogen positive breast cancer. 

I had my mastectomy including full auxiliary clearance at the end of October 2022 and the team have now discovered my initial biopsy was wrong and I am actually triple negative..

Any words or stories that people can tell me to explain how you have copes with this diagnosis. Just need some words of wisdom xxx

  • I did not have triple negative but as a veteran of all of a year , LOL, into my cancer treatment know there will be people on here who have experienced your particular type of bc. Just wanted to say hello and welcome. This is a kind , safe place for you to seek advice , cry , vex out . Whatever you need to get you through basically . 
    Peace and love 
    Penelope 

  • I too had TNBC. It is worrying to learn that after chemo and radiotherapy to help prevent reoccurrence,  there is little else but vigilance while you wait for five years to pass. But they can and do. My cancer was in 2015. It has been clear since. I have my 7th year mammogram on Dec 2nd. A close friend had the same diagnosis.  She has just reached her sixth year clear. 

    I hope our experience will encourage you a little and that the remainder of your treatment goes well.

    Love Karen

    1. I
  • Thank you so so much for your replies. It is good to.know you managed to get 7 years in and your friend 6 years in. This gives me hope. Please can you let me know what stage your cancer was at the beginning. I am very very anxious about my future and that is so hard with young children too. 

    Sending my best wishes for your next scan on 2nd Dec xxx 

  • My initial biopsy was oestrogen positive, though low at 4, but after lumpectomy it was found I was completely triple negative.  I then had chemo and  double mastectomy as I found out I had a gene mutation called PALB2.  I’ve just had ovaries and fallopians removed also because of the gene.


    I have a friend who’s been clear 10 years now which provides me with inspiration.  There’s a group on here for triple negative and also there’s a social media group (the founder is 12 plus years clear and was stage 3 I think) and one of the contributors is the group expert and has written a book on triple negative and is herself a six year survivor. 
    It sounds like your treatment has been very thorough so far.  There is an oral chemo called Capecitibaine which is often given if there is any residual.

    Lots of luck x

  • Thank you so much for your message. I am having oral.cheno (capecitibain) in a couple of weeks for 8 sessions and I am having radiotherapy in January to try to ensure any residual is gone. 

    I am scared  frightened and worrying about what they'll find at my next scan. 

    Your stories hearing about people reaching 10 years and 6 years really help to give me hope. 

    I've tried to join the Facebook group but not been accepted yet. Fingers crossed it happens soon.

    Sending love xx

  • Hi Ladies,

    I am so sorry to hear you have the TNBC my mum has this too she is newly diagnosed.

    We found out over Christmas, lump has been removed waiting to find out if she has the gene & lymph results this Wednesday.

    I am so grateful i came across your discussion my mum has been in a right mess & i know this will give her hope.

    xxx