stage 4 triple neg


I joined this forum recently and I just thought I would introduce myself and give details of my situation.  If anyone wants to chat, ask questions, give me reassurance I am open to it all.

Firstly, I am being treated in France, near Lyon but I don’t know if this makes a big difference to anything.  I am 47 (46 when diagnosed) and without children.

I found a lump last March and it was diagnosed as HER2+ aggressive BC.  It was removed within 10 days of me discovering it but an MRI showed that I had micro nodules on my lungs.  I could just about get my head around the BC diagnosis but the idea it was Stage 4 cancer was too much and I spent 3 months in a state of shock.  I could hardly move. 

I started the chemo at the end of April being told I would need 6-12 months treatment.  My onco said that Herceptin was a miracle drug and was very good treatment so I had loads of positive info coming my way but I was still terrified.  My mother died of cancer 17 years ago (non-Hodgkins Lymphoma) and I had seen chemo not working.

So first protocol was Herceptine, Perjeta and Taxol for 12 weeks.  First scan came and there had been a slight progression.  It was as if my worst fears had come true.  The onco told me to calm down and said it wasn’t a catastrophe.  So, I started the next protocol, 12 weeks of Kadcyla.  By this time, my GP has given me anti depressants so after the shock I was able to calm down and have a reasonable summer.  Kadcyla was easier, even though I had found the Taxol quite bearable.

12 weeks on, the next scan showed a greater progression and whereas the first treatment had at least partly worked, this Kadcyla treatment didn’t seem to have worked at all.  My onco told me she wanted to do a biospy on my lungs as now there was one nodule that was big enough.  Although my french is ok I am not completely fluent but I realised what she was talking about: the idea that the cancer was now or always had been HER2 neg, therefore triple negative.  I freaked out, having read about this type of cancer and the onco confirmed this was ‘less good’.

A trip to my GP, to whom i went for some reassurance, was awful.  He told me that I should start preparing for the end of my life.  Honestly, I don’t know how I drove home after that.  Needless to say my anti depressant medication has been upped.

So, a month without treatment waiting for the result which then was confirmed as TN.  My onco won’t be drawn in to any conversations about time scales and she has told me, with a dismissive wave of the hand, to forget about the stats from the internet.  She has a confident air about her which is reassuring.

So now I am on the AC regime, this ‘grenadine’ as it is nick named in France.  The day after my first treatment I had a fit and was carted off to hospital and yep, the cancer is now in my brain - three small lesions.  By this point, thanks to the anti depressants, it was almost as if I was beyond caring.

Again the onco was quite cool about it saying the lesions were very small and she referred me to the radiotherapist who told me I wasn’t in any immediate peril.  I am on anti seizure medication and I am banned from driving. 

The radiotherapist, the cancer doc in the hospital where I was admitted after my fit said that the chemo should target the brain too but my onco said not to worry if at the next scan I don’t see a reduction in the brain area as there is a barrier there which makes it harder for the chemo to penetrate.

So, after 3 blasts of AC i am due my PET scan on 12 Jan and then a scan on 13 Jan to get prepared for radiotherapy.

I am feeling ok.  I have no pain, the only symptom I have had so far is the fit and that seems to be under control.  I am feeling strong with lots of positive thoughts from people around me.  I want to beat this. However, as 12 Jan approaches my anxiety will be increasing.  God, it is awful.

Anyone else in a similar situation out there who would like to chat?

Hi Misty

Although my cancer isn’t triple neg, I can totally understand your shock as I was similar to you in the way we were diagnosed, I had my lumpectomy and was expecting a few rounds of radiotherapy when CT scans revealed lung nodules and spread to the hip and spine, I was halfway through chemo when diagnosed with secondaries. I just wanted to let you know you aren’t alone in feeling like this. 

Jools xx

Hi Misty

What a twit of a GP! I read your post last night and was speechless! I have heard medical treatment in France is very good, it could be your GP didn’t make the grades in the bedside manners module at med school!!

I have just approached my first year anniversary with MBC, my journey has no similarities to yours (not triple neg etc) but still, thank you for sharing - you sound like amazing individual x timescales are predictions… that’s what the past tense 12 months have taught me :slightly_smiling_face:  

Hi Misty

I am in the exact situation as you. Felt a lump in Feb 2020.

Triple negative diagnosed April 2020 (aged 40)

I had surgery May 2020 and a full body PET scan showed no distant mets in June 2020.

I started EC chemo in July followed by Carbo & paclitaxel after.

Had 6 weeeks off chemo in Oct 2020 due to abscess in armpit surgery and then I restarted chemo.

I noticed a tiny cough in December & so I requested a chest X-ray & quite a few lung mets were found.

Few days later, I requested an MRI due to tiny headaches & brain met confirmed on 23/12/20 (Merry Christmas to me!)

They are giving me brain radiotherapy within the next 10 days and then I’ll start chemo/immunotherapy for the lungs shortly after.

What is AC treatment you are having-sorry I don’t know all the abbreviations.

would be amazing to keep in touch-thought I was alone

Gemma x

Hi Misty, just wanted to wish you luck with your scan tomorrow, I will be thinking about you

Jools xx

Hi Misty, 

So sorry to hear of your diagnosis. My mum has just been diagnosed with the same and I am terrified. How are you getting on? 

Much love,