Thank you everyone for your comments and advice. Think I will have to be brave and bolshy tomorrow and ask the questions as worrying is worse. Thanks everyone and good luck to you all on your journey through the hell that is flipping BC!! (sorry to be so flippant - its not hell every day, just some days!)x
Regards asking questions ... I always thought as long as I can bear / deal with the answer it's alright to ask. I found their answers very honest throughout my treatment and this was not always positive, in fact hardly anything positive. Just like to say something re chemo response, fact is you can have a great response to chemo and get 2nd'ries and you might have not a great response and you'll be fine for years after. To have a partial response to chemo is the norm, to have a complete response is not so common.
Hi Spookymoo, I too had chemo first to try and shrink my 5.5cm lump, had no scans through treatment though as they were planing a mastectomy, originally planned a lumpectomy hence chemo first. Had the same FEC-T as you, half way through I thought it had shrunk but after surgery was told I had limited response to it (well surgeon said it didn't work, onc said it did 'something') The onc doesn't seem at all concerned which is hopefully a good thing.
My BCN said it wasn't unusual for ER+ to have a poorer response to chemo. As there was a partial response it was hopefully enough to kill any random cells floating around. The good bit of news I heard was that those that have a poorer response to chemo generally have a much better response to the hormone treatments.
I too am considering getting a copy of my path report just for the extra detail, sometimes think they forget to tell us stuff unless we ask, so ask away tomorrow! I don't believe any question is a daft question if it puts your mind to rest. I have actually finished my treatment now (details on profile if interested) and am just crossing fingers that the Tamoxifen does it's job.
It does really seem like every single one of us has treatment in a different order! I had my lump removed before chemo started and it was 4.9cms so I don't even know wether the chemo is working or not as there is now nothing to measure!
I would definitely ask at your next appointment the one thing that I have learnt is that no question is too silly or neurotic or annoying to them, they encourage questions and I would ask about anything that is worrying you as the worry is worse for you. Hope you get some answers and some good ones at that xx
Hi, I am not sure if I am posting this in the correct place, as I have finished chemo, but it is chemo related, so I hope am in the right place for some advice?
I was dx last July with a 2.5 cm tumour and had chemo from August - December 2012 to shrink it. I had x 6 cycles - x3 FEC, x3 Taxtotere. Prior to starting chemo,I had a coil marker inserted so that they could monitor "shrinkage"on subsequent scans. I was scanned mid-way through (after finishing FEC) and advised that the lump had shrunk to approx 1.2 cm. Which seemed brilliant! I had another scan at the end of the chemo and the lump was still same size . No more shrinking but at least it had not grown.
I had a wireguided WLE and full node clearance in February and it was discovered mid-surgery, that a piece of the original tumour had sheared off and moved with the coil marker to another area near the tumour and had not responded to chemo (i.e no necrosis etc). I have subsequently had another excision to remove this and also to try and get clear margins. I get results of this second excision tomorrow and we will then plan from there the next stage in the treatment plan (i.e rads or more surgery).
Anyway, the crux of my query. I thought until recently that my tumour had responded quite well to chemo. But the other day, I was at the hospital and seeing a different person (not my usual consultant or BCN) and she asked me if I was happy and if my consultant was happy as to how my tumour had responded to chemo, seeing that the reason I had the coil in was so they could find the right area once it had completely shrunk (which of course it didn't). I kinda got the impression, that it had responded well at first and then hadn't and it was not a good sign (although she didn't say this is so many words!). I am a bit worried now about her comments, especially in light of the bit that sheared off (which I have been told is highly unusual!) As I am seeing my consultant tomorrow should I raise this? I don't want them to think I am neurotic - I think they think that anyway.
Has anyone else had a similar experience? Should I ask for a copy of my path report? | am just not sure if I should worry or not? Help. I would be grateful for any advice or to hear any one else's experiences.
(PS I am 43, Stage 2b, Grade 2, Highly ER/PR+ but HEr 2 negative. One doctor has told me its aggressively growing, another has told me its not!)