Tumour continuing to grow on chemo

Hi, I’m just trying to find other people in the same boat as me.  I was diagnosed in July last year with grade 3 IDC ER 3/8 PR 2/8 HER2- so considered triple negative.  At diagnosis tumour was 18x29mm, and I was due to have a lumpectomy 2 weeks later.  The surgeon moved the goalposts the day before surgery, and only did a SNB (negative) even though I had said I didn’t want chemo.  The tumour was obviously growing and I felt backed in to a corner because it was so much bigger, and felt forced to have chemo.  4.5 weeks after diagnosis I had a marker put in as they kept insisting it would probably shrink away to nothing - at this point it was about 40mm.  After 3 FECs I felt it was larger still, but my progress scan showed a negligible increase, but there were two new small patches right next to the tumour - they told me they were part of the original tumour!?  I had quite a number of problems with the hospital so had no faith in them and pursued a referral to a different hospital.  Despite my original hospital insisting it couldn’t be growing (nobody ever examined me!) my appointment at the new hospital happened just after my second tax.  By then there had been yet more growth and the tumour was clearly visible protruding from my breast.  In less than five minutes the surgeon booked my mastectomy and told me not to go back for the last chemo.  A CT scan just a few days after (apx 7 weeks after last u/s) showed it to be 95mm - not growing my foot!  Pathology showed that it was now ER/PR 0/8 so totally negative.  The MDT were all shocked at such substantial growth whilst on chemo, especially on tax.  I’m looking for people who have experienced similar, as I’m struggling to find any.  My new team want me to have more chemo with carboplatin, but given the scarily fast growth on tax, I’ve already gone through months of chemo for nothing, and now there’s not even anything to measure its efficacy!

Evening Dudders

 

I can’t in honesty say my tumour continued to grow but it didn’t change at all… Initially the consultant, on physical examination, said approx 4cm.  Scan showed 5cm area of concern (4cm + some tails / jagged areas / cells in early stages of change were the explanations given) for not being exact.  Biopsy showed ER8/8 PR 8/8 and Her2negative.  I was assured hormone positive tumours respond well to FECT… I had neo adjuvant Chemo FECT at i think 100 Chemo Nurse said it was the highest dose…  It was all a blur, i didn’t know this site, nobody in family had this, nobody i know…  I had MRI following FEC3 which showed no change.  The Consultant Surgeon was devastated, in fact i was reasurring her because before the chemo i asked the Oncologist what to expect.  He said FEC would soften the Tumour but may not start to shrink it, they would expect some change on Taxol…  Pathology report following surgery states Tumour was 4.2cm on excision with minimal respone to Chemotherapy… I was diagnosed October 2012 had surgery April 2013 so now three years down the line… Have had rads and further surgery but doing good and despite a large tumour the M/X got rid with good margins. Hope this is helpful.

 

Take Care  Butterfly XX