Wifes 1st diagnosis with tnbc - treatment

Hi Ramsay2k24 

I was diagnosed with grade 3 TNBC 2 years ago and had treatment in the same order as your wife. As I understand it, chemo is offered first if the lump needs shrinking before surgery. As my lump was also small I had surgery first followed by chemo and then radiotherapy.

Treatment plans are tailored to the individual so please don't think your wife's consultant has 'got it wrong' if her treatment plan doesn't match someone else's.

Thanks for this. If you don't mind me asking, how long did you have chemo for? Was it tough as we expect it to be? I imagine everyone has a different response. We have 2 kids, 19 & 16 so trying to prepare them as best as we can!

Of course I don't mind you asking Ramsay2k24 

My chemo took place over about 5 months. I had two different types. The first is known for short as EC and I had 3 doses of this, once every 3 weeks. During this time I lost my hair, but the only other side effects I had were a loss of taste and feeling 'washed out'. This feeling would last for about 12 days after the treatment and then I'd feel back to normal for the remaining time before my next treatment.

The second type of chemo was paclitaxel and that was given weekly. I didn't have any side effects while on that and my hair started to grow back towards the end.

Hi Ramsay 

I was diagnosed with TNBC March 23 I had lumpectomy first as lump was small , I had op April no spread lymph’s clear . Started chemo in the June 3xEC and then 3xDocetaxol every 3weeks .so 4 mths worth .lost hair felt very tired at times !! Lost taste but managed to eat and still went for a walk everyday .went out with friends when I could and rested in between .I did have to have another op in October as they found pre cancerous cells on the edge of the margin . Chemo sorted it and it was all clear . Radio started Dec x 9 sessions .First mammogram clear in March 24 , I’m 59 so decided to retire but life’s normal again I do worry about it coming back I think most of us do .Your wife will be fine when she gets started on her treatment plan the waiting is the hardest part !! I wish her well on her journey and lots of love to you all .

Hi Ramsay2k24 

Your wife will be on the pathway for early stage TNBC. As you say things may change depending on genetic tests.  Assuming all is straightforward, surgery is usually done first if the tumour is less than 2cms and isn’t expected to be in the lymph nodes. Chemo is usually offered after surgery if the tumour is larger than 5mm or extra complications are found during surgery. If they are quoting 6 months of chemo then it is likely to be 4 cycles of EC followed by 12 weeks Paclitaxel.  Then 5 days radiotherapy. That’s what I had for an 18mm tumour. 

Hi

I am BRACA 2 carrier and was diagnosed with TNBC.  My local hospital said a mastectomy but no chemo.  I was under Guy's hospital for my my genetic monitoring and asked to be transferred there.  They were not happy but I had confidence in my breast surgeon.  I had a double mastectomy with implants and then chemo. 4 infusions of EC fortnightly and then weekly Paclitaxel for 12 weeks. A marathon and not a sprint.

I now have a Zometa infusion.  Every 6 months for 3 to 5 years.

My advice ask the questions however foolish they sound. they never are. I did not have radiotherapy.

Thanks for the replies. She had a lumpsectomy last week and they took out 4 lymph nodes. We had a meeting today and they said they removed it and the margins was clear but they found cancer cells in 1 out of the 4 lymph nodes.. and have ordered a pet scan and then a meeting with the oncologist.. she's understandably upset now it was found in 1 one of the lymph nodes as she thinks it's spread now... The tumour size they removed in lumpsectomy was about 12mm...

Hi Ramsa\y2k24

Sorry to hear that they found cancer in one of the lymph nodes they took.  A similiar thing happened to me and I had a CT Scan as a result and I got the all clear.

Hopefully your wife will have the same outcome as me.

Best wishes to you both.

Daisy53

thanks, glad top hear you got the all clear! she is just waiting on a PET scan date now, was a bit of a punch in the gut! hopefully as she caught it early (was 11mm) and was just in one lymph node (which they took out during lumpsectomy) that it has had a chance to grow anywhere else, as from what he was saying the treatment is still chemo and radiotherapy.

Hi Ramsay2k24 

Like your wife, I had 1 lymph node with some cancer cells in. Mine was described as micro-metastasis so the oncologist said that he was happy to approve chemotherapy for me but that as some oncologists counted micro-metastasis as the same as not having cancer cells present, the decision was mine.

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