Not responding to chemo - anyone had a good outcome after this news?

The wait is the horrible part, the thought of it possibly spreading is the worst part it's mentally draining. I'm having a mastectomy, that was always the plan so hopefully in the next 2 weeks or so. Oral chemo has been mentioned along with radio for me. When was you diagnosed at what stage and grade are you?

Diagnosed in March. Stage 2 with approx 3cm lump and grade 3 which wasn’t in my lymph nodes then so hoping it still isn’t but it’s grown quite a bit since 

It's so scary knowing it's growing and the chemo isn't working. Mine is currently around the same size. You will have to let me know how you get on

Thank you, you too x

Hi Sarah. Lou , I’ve had what I’ve been told is a “pepperpot response” to chemo. During my treatment they were convinced it had shrunk by half and response was good and I had scan etc. I then had my surgery as scheduled a lumpectomy and got clear margins with no lymph node involvement so now because of the chemo response they are checking what treatment I will be offered next. I still have radiotherapy which was always part of the plan and then may be having Capecitabine which I now know is quite common. Keep strong, you’re def not alone xx 

Hi DenM, what does clear margins mean? Sounds like you had a good response to chemo? I got my surgery date today so I'll be getting that in 2 weeks. Just hope it doesn't grow fast

Hi Sarah.lou clear margins mean that when they took out what was left of the lump, they take the surrounding tissue to make sure they get everything so they call it getting clear margins. This is shown in the pathology results which you get a little while after surgery. If they didn’t get clear margins I would need further surgery, possibly a mastectomy but as they got the clear margins I was told that I didn’t require further surgery. The only thing in question was that the lump wasn’t as small as they had thought and that chemo had made these pepperpot holes in it rather that just shrinking it but it was still positive that it had caused some changes to it and it didn’t change their minds on the surgery that I was to have xx 

Hi Sarah, thought I’d update you on where I’m at. They decided to do a full mastectomy in the end which I had 11 days ago. They did a sentinel lymph node biopsy so waiting for those results to decide if they go in for more surgery and am due to see breast surgeon tomorrow. Hopefully they managed to get it all and with clear margins but it was do large I’m so small I’m not sure if that is possible but we’ll see. They said I’ll now have radio when I’m recovered from the op but wouldn’t commit to what chemo or treatment comes after that. Think they want to look at it under the microscope first and discuss as MDT. I’m bit scared if I’m honest as there seem to be a lot of unknowns and not much reassurance. Trying to focus on recovery from surgery which I’m finding slow but I’m very impatient  then go from there. Oral chemo has been mentioned but who knows. How you getting in? 

Hi this happened to me first 4 rounds I had EC and tumour had shrunk the next 2 rounds (should have been 4) of doxitaxal the tumour had grown and chemo stopped working. I had emergency mastectomy and 22 lymph nodes removed (9 had cancer ). That was October 23. Then I had radiotherapy in February this year. I have now got cancer in my neck and breast bone and 2 ribs. ( triple negative cancer ). I have just started oral chemo a week ago. Capecetibin I’m praying it works 

Reading this gives me some hope! 

12 weeks of pac/carbo to be told the tumour hadn’t responded. I felt dreadful for the 12 weeks. 
Like whatnext, I assumed something would happen and was gutted. 

Surgeon didn’t write everything off and has sent me for an MRI after 1 cycle of EC in the hope this responds. 

I am frustrated. at the beginning, Mammogram was measuring 3.6cm, 5 weeks later CT scan measures approx 6cm. 
ultrasound after 12 weeks measures 3.4cm. 

I am awaiting results of MRI scan.

Just on cycle 3 of EC. 

surgeon did say not to be concerned as shrinkage is a ‘bonus’. 

My anxiety is through the roof. I haven’t had a PET scan. Is there any other way of telling whether it has spread? 

Set off on immunotherapy as well, same as Sarah.lou, however caused liver enzymes to raise dramatically so this got stopped. 

How are you all getting on?xx