Tripple Negative and chemo first

I have posted this on behalf of new user Louise

I’d like to talk to other people who are triple negative and are having or have had chemo first.
I was diagnosed with 3cm tumour in November 2010 age 35 and was immediately put onto chemo first. I’m about to complete my fourth epi and will go onto cmf (possibly tax) for 4 cycles before having surgery and lymph node clearance.
I worry because of having chemo first whether my lymph nodes were infected and if I’ll find out because I’ve already had chemo.

hi Louise

I had chemo first, it worked well enough to completely obliterate my lump to the point that it wasn’t detectable on an ultrasound anymore. I was told how many of my lymph nodes had been affected, I’m not sure how they knew, if the chemo had removed the cancer, but they must be able to tell somehow.

Good luck with your treatments xx

Hi louise

i had one tumour which was hormone positive then a few years later had one that was triple negative.

i didnt have chemo first as my tumour was 1.9cm and small enough to remove first… but i did have the same type of chemo… Epi-CMF… this doesnt seem to be used as much as FEC or FEC-Tax.

if you have chemo first this is a good way of knowing how effective it is in the first instance but for younger women having chemo first has actually been found to be more effective than having surgery first.

regarding your query about your nodes if they had any cancer cells in them this would show up on the pathology that their was scarring or similar caused by the cancer even if it had all been eradicated by the chemo.

Lx

Hi

My lump was triple negative but I had surgery first, my lump was quite big too, 3.7 cm and my boobs aren’t big at all, I told the consultant to take my boob off but he was happy to just do a WLE. I had 6 x TAC chemo, which includes TAX and two other drugs, the C bit is the C bit in CMF and the A is similar to EPI. After surgery they got good clear margins and my nodes were clear but I am still surprised I had a WLE then chemo, I am just hoping this was the right decision as most women with a lump over 3cm tend to have chemo first.

Good luck. Amanda xx

Hi

I am currently having chemo first before any surgery. My reason was not due to lump size (was only 11mm) but because it was triple negative and I was confirmed as being BRACA 1 positive I had other options regarding risk reducing surgery.
Basically size and position meant that I could have just have had a WLE but they were also offering double mastectomy with recon becuase of family history. As my breast surgeon put it we knew I def had to have chemo as it was Grade 3 so doing it this way round bought me some time to make decisions on which surgery I wanted and also meant would only have surgery once (albeit a big one!) rather than a WLE and then potentially mastectomy etc at the end.
To be honest I was pretty nervous at the start, especially as lots o people made comments about how it was not the norm and wasn’t I worried about leaving the lump in. But my onc reassured me surgery would be soon enough after chemo ended to not pose a risk plus the big upside has been I have had 2 scans up to now and the chemo has competely cleared the lump. It has been great to actually see it getting smaller and really know its working whereas if the lump had already been taken out I would just have had to trust it was working.
I am now due to have my 3 x CMF on Wed 26th (already had 4 x Epi) with chemo due to end on 2nd March all being well. Surgery is planned for 2nd April…
Hope this helps

Lucyxx

Oh yes - regarding the lymph nodes I am having the sentinel biopsy on the 24th March as need to confirm isn’t in nodes before surgery. Fingers crossed…

Lucyx

hi lucy

that sounds like a sensible way of doing things… i had a lumpectomy to one side and then 3 years later lumpectomy to the other followed by chemo and followed by the gene test result that i had brca2.

i did ask to have both breasts off when i got the second tumour but they were not too keen to do this and encouraged me to have a WLE instead which i did and now waiting to have a double Mx and recon later on this year and dreading it… still wish id really demanded to have boobs off as the thought of more surgery ahead irritates the hell outta me and its not going to be straightforward due to the scarring i have now.

interesting they dont do the sentinel node biopsy at the same time as the surgery… they do them together at my unit… it seems to vary sooooo much up and down the country.

good luck with your op and your snb.

Lulu x

Thanks Lulu

I agree it is so weird how things differ depending on where you are but then I guess the whole treatment plan for each person is so different as well. Just got to hope rest of chemo goes to plan as I only have 4 weeks between estimated end and surgery date which is not long…!!

Lucyx