Variation in Treatments

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I was diagnosed with TNBC in December. I start chemotherapy on Thursday.

I keep reading other people's treatment plans, and I know it's not a good idea to compare, but I'm really confused. My tumour is 13mm and no obvious involvement with lymph nodes (obviously this can't be confirmed until after surgery). Before the biopsy results, it was thought I could just have surgery and radiotherapy, but once it was confirmed as Triple Negative, they said chemotherapy was the only choice. They want me to have chemotherapy first, so haven't even confirmed a stage, but based on the scans it looks like stage 1 or 2. It is however a grade 3 tumour.

I would have preferred surgery first - it feels like this way keeps me sicker for longer. They want me to have 4 rounds of carboplatin (3 week intervals) with paclitaxel weekly for 12 weeks, in addition to the new immunotherapy Pembrolizumab. Then I switch to EC for another 4 rounds plus immunotherapy, so 8 full rounds, six months! (I haven't had it 100% confirmed whether they are starting with the CP combination or EC first, not sure which way round, but either way - that is the plan).

Then surgery, and then radiotherapy in addition...

I read other people's treatment plans - some seem to avoid chemotherapy altogether, and lots seem to get away with just 3 rounds of chemo (6 in total). I can't help but feel like my treatment plan seems brutal! 

Is this standard?? I'm absolutely dreading it! Doesn't help that I don't feel like I have been very well informed, and don't really have a rapport with either my BCN (who I've never met in person, only on the phone) or my oncologist.

  • Oops, edit - 3 rounds of EACH chemo (6 in total)

  • I was diagnosed 20th December, TNBC IDC 11mm, no obvious lymph involvement.  I go straight for lumpectomy on Thursday.  I don’t know how they decide who gets what?   I’ve been told radiotherapy/chemo after.  I’m having my treatment in Spain but guess same principles should apply.  

  • Hi

    sounds like what I have just had I’m on my final round of immunotherapy and paclitaxelRolling eyes. I was diagnosed in July I wasn’t told what stage either just the grade also grade 3 and I did have a lump under my armpit that was biopsies but I was never told the results!  I can’t get hold of my bcn either I’d leave a message and hoped for the bestFingers crossedi haven’t really bothered with them for the last 4 months! You get into a routine and go with it.

    I had 4 EC and immunotherapy every 3 weeks! then been on cycles of paclitaxel since November. So it’s weekly! First one being with immunotherapy! 
    Good luck

    if you have any questions I’m happy to help 

    Lynsey x

  • Hi, I was diagnosed in July grade 3 tnbc 18mm and after MRI scans informed that chemotherapy would be first, followed by lumpectomy and radiotherapy. I underwent 9 weeks of taxol and carboplaitan followed by two rounds of EC (reduced from 3 that was planned). Last chemo was at the end of November. A scan after 7 weeks showed that the tumour was shrinking and was half the size. Surgery was a few days before Christmas and the surgeon commented that the tumour was no longer palpable. I received an unexpected phone call just before new year from the oncologist to say that the chemo has had a complete response and there was no cancer left! It was definitely worth going through the chemo and all its unpleasant side effects to get this result. I’ve still got to have radiotherapy plus boost to help make sure it doesn’t come back. During my treatment I’d read about other treatment plans and wonder why some received the same drugs but in different sequences to me, but felt I just had to have faith in my oncologist who would know best…. And she certainly did! 

  • Hi  

    The medical resource UpToDate Is used by many doctors and indicates chemo for TNBC unless the tumour is smaller than 0.5cm. This is because of the aggressive nature of TNBC. So I think it’s very common to offer chemo. There will be variability on whether chemo comes before surgery, as they are recommending for you, or after surgery. The game changer is the recent approval of Pembrolizumab for early stage PD-L1 positive TNBC, previously it was only approved for metastatic TNBC. I would imagine this will change standard practice towards giving Pembrolizumab with chemo before surgery for eligible patients.

    Back in Feb 22, when I was diagnosed, Pembrolizumab wasn’t approved for primary, high risk, TNBC.  My TNBC tumour was thought to be 1.4cm before surgery with no lymph node involvement. I had surgery first and it proved to be a little bigger at 1.8cm, with no lymph node involvement, but with vascular invasion. What I didn’t know then (diagnosed Feb 22) was that the vascular invasion had already allowed that very small cancer to spawn a secondary on my liver. I had surgery, then chemo (4EC and 12 weeks of Paclitaxel). Part way through this, the secondary was found following a scan done for other reasons. The secondary has been ablated and I am on a scan and wait and see regime.  Pembrolizumab will be my next line of treatment alongside yet more chemo if/ when it comes back  

    I am fairly sure I would have been served better by starting with Pembrolizumab plus chemo and I envy you having this option!.I hope not to frighten you with my story. 

  • Thanks for replying Coddfish, I really appreciate your perspective. Yes, I did research the Pembrolizumab, and was astonished it was so very newly approved (literally finalised by NICE a few days before it was prescribed at my oncology appointment - I'm led to believe I'm one of the first in my hospital to receive it for early stage TNBC, they struggled to find any print-outs for me because it's so new!). I hadn't considered that might be one of the reasons that influenced chemo first, or how much of it I received. 

    I think at the moment, I am just so daunted by the prospect of the chemotherapy - especially with it being weekly sessions, I'm just terrified. I have PTSD from a previous medical related incident, and the thought of so many hospital appointments is absolutely petrifying at the moment. I'm sure when things actually get underway I'll cope better, but I'm in that awful stage post-diagnosis and pre-treatment, and the anxiety is honestly overwhelming.

    Thank you so much for sharing your story, I'm so sorry you have been through this. I do hear amazing things about Pembrolizumab, so I hope this will serve us both well, and you'll get to benefit from it too in future! 

    Wishing you all the very best.


  • Hi Rosanne I too have TNBC. Was diagnosed back in May and had Chemotherapy first. I was on FEC T 6 rounds three weeks apart so fluorouracil epirubicIn cyclophosphamide for the first three and docetaxel for the last three. Alongside those I had five days of immune boosting injections after each Chemo session. I didn't have a complete response to the Chemo but it shrunk my tumor down enough that it wasn't clearly visible on the ultrasound. I then had a lumpectomy and sentinel node biopsy in October and I am due to start my Radiotherapy on the 26th of January.

    Happy to chat anytime. Best of luck with your treatment x