Advice please!!! I was diagnosed at Basingstoke hospital in July, (grade 3 aggressive, 5cm tumour) and had a needle biopsy, which confirmed cancer, and was told I was hormone negative, but was not tested for HER2+ status. There they have a policy to do surgery first, followed by chemo, so would test the tumour when removed.
I then transfered to Wolverhampton, as I had moved, but there I started on neo-adjuvant treatment, so have had chemo first. The good news is that after 4 cycles of EC, there is no sign of the tumour. So my worry now is that there is nothing to test for HER2+ status. Also I will not have any confirmation of how many lymph nodes were involved (I did have swelling under my arm, and there were some areas found on the original ultrasound) I know they will all be removed, but I will have no idea of how far the cancer had spread. I know that not knowing will not affect anything in the long run, but it would help me emotionally if I knew there were only one or two invlolved… I’m big on facts and figures, I like to know stuff!
Anyone have any ideas or experience with this, especially the HER2+ test? I have asked my onc several times, and have just been told they will chase up Basingstoke, but nothing has happened.
I too opted for neo-adjunctive chemo, and Larry Lump has shrunk beautifully and now, half way through, is just 6mm (was 1.8cm). My BCN has emailed me with an appointment for an ultrasound guided marker to be inserted - in case we lose it altogether! When I had my biopsies they didn’t check for HER2 or hormones, I was told that would be checked when I had surgery. So I too am wondering just where we will go after surgery if Larry has completely disappeared!If we don’t get any answes I’ll ask the onc tomorrow (if i see her) and my surgeon next week.
I had the same problem, the final tumour when removed wasnt suitable for staining - had had big reduction with 6 cycles of FEC. So the based the herceptin syaining on the sample from the biopsy - not ideal but it had to do. I started herceptin last Friday.
I was worried as the tumour was hard to pick up on the scan after the FEC, but histology did pick upsome tumour area. Its unlikely to have disappeared totally beyons histological detection.
I know what you mean about the LNs, I had 7 removed and 7 were positive - does this mean 100%, were all the others positive ? I`ll never know. But I was assured that the radiotherapy to the remaining lymph nodes would zap any positive cells. They did radiotherapy to the chest area and nodes above my colloar bone to make sure.
Jane is right, my tumour measured 7.5 cm at the start and had an ultra sound after the last chemo which showed that it had shrunk down to 2.5cm, i struggled to find it. After surgery the actually measurement was 4.5cm. Keep at them though as if you are HER2 positive you need to press for Herceptin.