Thanks for your thoughts everyone. I have until next Monday to make up my mind so will dither for a bit longer but at the moment I’m pretty sure I’ll go for the chemo first. For one thing it will be something of a comfort to go through it at roughly the same time as some of the friends I’ve made here. For now, anyway, I’ve got the 9th as chemo start date in my diary and can start planning the next two weeks around that. My mum was diagnosed with Alzheimer’s earlier this year and I need to organize a few things for her before any more treatment starts and getting that out of the way will be a huge relief.
Morning all. Well we had an earthquake here last night! About 10.40 there was a big rumble and we felt the vibrations through the floor. The pictures all wobbled about on the walls. We had one here in Jan this year too and apparently it’s a hotspot! No one told us we’d be moving in to an earthquake zone when we moved here last year, lol. Quite a year for us with one thing and another., you could say!
Yes it’s very odd Jill. You don’t tend to think of the UK having earthquakes. The earth definitely moved for hubby and I but only in the geological sense. The Anastrazole has put paid to any other form of excitement, lol.
Hello ladies. I joined the thread a couple of weeks ago, but I’ve felt the need to keep my head down, so sorry if I’m being unsociable.
Peggy, your latest posts prompted me to post as I may well be in your position in a short while. I have early stage cancer & I’m having a lumpectomy in a few weeks time, followed by radiotherapy and drugs. I’ve been asked if I want to sign up for the POSNOC trial, although they will test my nodes during the operation and there is a good chance that they will be clear. If I sign up for the trial and one or two nodes are positive, the first I shall know about which pathway I am on is when I wake up. I’m not sure I like that, to be perfectly honest.
One of the things I am most concerned about is exactly the situation you describe yourself as being in - where there are slight traces in one node. I have read everything I can find on this, and it seems to me that in those circumstances, it would be better for me for the nodes to be left in place. I am extremely concerned about lymphodema, as it is my dominant arm that is involved and I am concerned that I might not be able to continue with my job afterwards. I am highly receptive to oestrogen, so the drugs should do their job.
I spoke to one of the BCNs today and she reassured me that if there were only traces, then I could not go on the trial at all, and they would follow the best practice in those circumstances, ie not remove my nodes. What you have said has thrown me into a panic about it.
At the moment, my feelings are that I would prefer to be the master of my own destiny, rather than allow the fickle hand of fate to do the deciding for me.
There is a YouTube video on the trial which is worth watching, if you haven’t already done so.
So it went as I kind of thought. FEC-T, radiotherapy then tamoxifen for 10 years. They’ve also said Nikki can have zoladex during chemo. Treatment won’t start til towards the end of October though.
Oh Gracie, I am sorry if my postings yesterday have added to your anxiety.
Are you saying that you would not be aware of which part of the trial you would be randomized to at all before your surgery and if they found anything in your first surgery they would already do a full node clearance then and there? Obviously it’s different for me because I already know that I have a node affected so if I decided to take part then I’d know in advance if I’m in the removal group or not. I hope I have understood you there. I agree that this unknown element would be disturbing.
I wonder if, like the differences in measuring clear margins, different hospital trusts have different policies and your’s has the best practice of not removing if one to three nodes only have small traces? I certainly got the impression yesterday from the onc and the consultant that they both felt more secure with full clearance for me and that is the standard in my trust although at my post-op appointment my normal consultant/surgeon felt that non-removal in my case might be an option to consider and one that I was seriously thinking about. Like you, I found the research I read compelling. I am however split between two trusts - my main local hospital and one where I had the surgery where my consultant is based - and I’ve started to wonder today if that might have something to do with the confusion I’ve faced?
Also consider that I have had a MX whereas it sounds like you are going down the lumpectomy/rads/drugs route. I believe the original US study was only carried out on people who’d had lumpectomy and rads and not MX so maybe that’s why some of my consultants don’t think I’m a suitable candidate.
I have seen the You Tube videos and seem to remember the consultant leading the trial saying that if you had a very strong leaning to one course of treatment then you are probably not a good candidate for entry.
Good luck with what you decide to do. As if we didn’t all have enough decisions to make!
The Zoladex helps try and preserve as much of the eggs as possible. So increases possibility of still being fertile after treatment but the tamoxifen adds problems too
We’ve heard from one clinic and they say her bmi is too high! The other issue is bc is estrogen positive and it’s increased during the egg removal plus would delay treatment by a couple of weeks
Gracie sounds like we have similar diagnosis. Mmy lymph nodes were clear and left. If they had of been positive it would have meant removal. So the trial you may take up will leave them in regardless and just zap them? Interesting. Though the radiation is meant to sterilize area and kill random cells so can understand this could be directed at nodes too. It’s just that I was told the bc travels through nodes in the first instance so I would be asking for a time scale …How Kong does it take to travel or will it be zapped straight away. Just my thoughts x
Lots of hurdles in your way Barry.I suppose it depends how important keeping that option open is to you both.Hard decisions all the way with this illness .