Does TNBC always mean Chemo?

  • 30 replies
  • 32 subscribers
  • 3195 views

Hi everyone,

I was wondering if everyone with a tnbc diagnosis is offered chemo as standard or if it's only if it's stage 2 or later? I had my lumpectomy last week and won't get my sentinal biopsy result until a week Wednesday, but was wondering what to expect treatment wise going forward. My breast nurse told me I'll deffo get radiotherapy but never mentioned chemo. Anyone out there had stage 1b grade 2 who hasn't had chemo offered?

Thanks in advance 

  • Everyone reacts differently to chemo so don’t worry too much when you come across horror stories. It’s definitely worth keeping a symptom diary so you can see the patterns more clearly. A few “hero” products that got me through:

    1. Polybalm. You rub it into the nail beds twice a day. My finger nails are perfect, no discolouration. Toe nails haven’t survived as well but are hanging in there. 

    2. Omeprazole. Instant relief from acid reflux, plus acts as a stomach protector if you need to rely on ibuprofen 

    3. Loperamide for diarrhoea 

  • Hi there, looking for a bit of advice please.  Just had my pathology results.  TNBC pT1C N0 M0 tumour size 13mm.  My surgeon now handing me over to Oncology specialist at a bigger regional hospital in Spain.  She said it would be a risk vs. benefit assessment whether chemo necessary.  She also mentioned genetic testing.  I’m confused as I thought TNBC always meant chemo?  She also said to expect radiotherapy daily Monday to Friday for around 4 weeks.  I’m seeing the Oncology specialist on Friday.  

  • Also,should have said grade 2

  • Hi Ochno, 

    I was told by the oncologist that it depends on grade and stage whether chemo is offered. Ultimately if your tumour is bigger than 9mm they recommend chemo, but you decide whether you want to go ahead with it. I said yes, because the recurrence rate is high and I believe it's better to fight with everything at our disposal.

    Hope everything goes well for you Slight smile

  • Thank you.   I got the distinct impression she thought that radiotherapy would do the trick but she didn’t actually come out and say that direct.  I’ll see what my Oncologist says on Friday and make a decision based on that.  I don’t actually know what protocol they follow here in Spain.  

  • Hi @Ochno. In the UK, the surgeon would leave the recommendation to the oncologist as it’s their area of specialism. I had similar pathology albeit an 18mm grade 3 tumour and went off to an appointment to discuss the “risks and benefits”, and it was clear it was going to be a very strong recommendation to say yes. Don’t know whether yours being grade 2 will make a difference to their recommendation. 

  • Hi there, Coddfish. I’m sure it will all become clear on Friday.   It’s all such a waiting game.  I had a look at the NHS Predict tool and if I’ve used it correctly, didn’t show too much difference chemo or no chemo..I think around 3%.   I shall update on Friday x

  • It wasn’t a much better statistic for me but TNBC can be very tricky. Mine had already spread to my liver despite being small and not in my lymph nodes. 

  • Tricky indeed!   That’s my worry, perhaps the little blighter hiding somewhere else ready to wreak havoc.

  • Hola!  Just getting my questions ready for oncologist on Friday.   There are a lot!   Apart from Predict are there any other prognosis type tools that are used for TNBC.   My surgeon mentioned some kind of scoring system available that would be indicator if chemo recommended??  I can’t see anything online?   I just need to understand everything that can possibly come up, especially as there may be language difficulties. I’ve asked to have an interpreter but still to be confirmed.  I have read so many clinical papers that my head is spinning!  

    I’ll be totally honest, at this stage the thought of chemo scares the life out of me.  The opportunities for things to go wrong along with the language barrier seem insurmountable to me.  I’m swaying towards rads unless he can put forward a good case otherwise.  I’ll be open and honest with him.   Perfecting the Spanish for “if I was your mum, what would you tell her to do!