Hello. I had a meeting with my consultant last week and they have asked whether I’d be interested in taking part in the ATNEC trial. They gave me lots of information and I know it’s a trial where they won’t do a full lymph node clearance as long as certain conditions are met. Just wondering whether anyone else has been asked to take part or is taking part in this trial?
Hi, I’m not sure I’m eligible yet but this has been mentioned to me, at least i think it was this trial. I’ve not been given any information on it but will be talking to someone on the trials team next week.
At this point in time I understand I’m high risk of recurrence so my instinct is to say no. Have you any thoughts on it?
I am also thinking of declining the trial. I just feel like there’s too much uncertainty around risks of recurrence and there is too high a risk that something will be left behind in lymph nodes.
Hi @rrey what did you decide in the end? I have had it mentioned to me today and was thinking they wouldn’t offer it unless it was safe? I have one lymph node that has shown up in the scans as cancerous but obviously won’t know the full story until after surgery. But with this trial they only take out nodes near the affected ones? Or at least that’s how I understood it?
Hi @purple_rain - I declined the trial in the end. I found it very difficult to make a decision and agonised over it for some time as there are pros and cons to each, but felt in the end that I wasn’t comfortable with the trial so had no option but to decline.
Yeah, as I understand it, they will remove the lymph node that was biopsied and confirmed to have cancer cells and then afew others around it. If the histology of those removed come back clear, they won’t remove any more. If the histology comes back showing residual cancer in those removed, they’d then do a full clearance.
I chose a full clearance as I felt uneasy that they wouldn’t know if any other lymph nodes had cancer cells and if they were left, it could spread. But that’s what trials are all about isn’t it, weighing up pros and cons and trying out different things to improve treatments. Unfortunately I just didn’t feel that this one was right for me. I know that I will now live with an increased risk of lymphodaema but it’s the decision I made.
Make sure you get all the information you can on the trial and take your time to digest it, ask questions and be comfortable with whatever decision you make x
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Thank you @rrey it is a tough one. I was definitely interested when I first heard about it but as I’m thinking about it I just want that assurance too that it’s safe at the same time xx