It’s a really personal choice and nobody can really advise you. I’d only say that, if it was me, and I was a year off being able to do this trial, I wouldn’t take it. The crux of the trial is to work out if node-positive with low oncotype can safely avoid chemotherapy….which they may well be able to. But, it’s a trial because they just don’t know. They could get to the end of it and say, actually, it’s not that safe for node-positive. however, chemo (which you may well still have under the trial) has its own downsides. It’s just a huge decision and I’m glad it was taken out of my hands. Maybe speak over with your oncologist exactly how hormone positive you are - the ER and PR receptors are scored out of 8 as this will affect how responsive to endocrine therapy.
Thank you for replying the information I get back the informed a decision I can make.
I will however or whatever advice make a decision that's best for me.
I am aware that they only recommended looking at trial and doctor said it was recommended I look at chemo as well as radiotherapy. But it wasn't a must so that's why I am making this enormous decision myself.
Once i have sat down with the oncologist I can then see it from all sides.
It's just nobody really has any experience of this trial I've spoken to so far. I thought I would put it out here on this platform.
I have also been offered to Optima trial versus chemo, but like the lady says above, we may still end up having chemo as part of the trialc so I am also waiting to see the oncologist to discuss this further. 1/1 node was positive following mastectomy for myself. I had 2
clear margins and one not clear so need radiotherapy too, I’m just so confused about what to do and waiting for oncologist appointment is playing on my mind.
I think it’s spread across three countries, so perhaps not that many from the uk on it and also on this forum. it is a dilemma as I suspect somewhere down the line, those of of that have had chemo, outside of the trial, will find out it was unnecessary and for no benefit. Very hard decision xx
Hi, just thought I'd let you know my personal experience! I opted in for the Optima Trial. I didn't find it a huge decision to make, because I knew that whatever the outcome of the Trial, I could still ultimately make my own decision as to whether or not I went ahead with the Chemo. In my case the Trial outcome was to proceed with Chemo anyway unfortunately! My feeling was that I was adding something positive to the Trial, which will be beneficial for others in years to come!
It is a huge decision, and completely understand that we almost want someone else to make the decision for us! I'm a bit of a 'statistic person'. I found it helped me by looking at the 'Predict' data. In my case Chemo added 9.9% benefit for my 15 years data, which I considered to be something that was worth doing!
I hope you manage to make the right decision for you. It is a very personal decision to make.
Thank you so much Heather for the detail around this huge decision on the optima trial.
The more people like yourself that has been through this experience the better informed are.
I think the main thing I have taken from this is the decision of yes/no is mine to make.
I'm am really anti chemo for personal reasons but like yourself I can take the statistics and work with that versus the risk of reoccurring in the next 10 to 15 years.
So I am aware the decisions we make are always going to be difficult for we are all individuals with different circumstances.
I have been on this trial since June 2019, a month after surgery and was given chemo. Only half of the women are tested and the other half allocated chemo without testing so I've no idea which I was. My 10 year gain was 4%, so borderline anyway, but if I didn't have it I wanted something to back that up. I think if I'd LVI or grade 3 I'd have opted for chemo anyway.
“Remember to look up at the stars and not down at your feet. Stephen Hawking,
this is interesting- did they say why they were splitting the smokers as I thought it was all just down to the genomic test in the trial arm and all got chemo in the control arm?
They don’t have any lifestyle factors on nhs predict and I’ve always wondered if they have much on an impact.
I'm also interested on why they split it into group categories. As I'm a non smoker and nhs predict 4% gain on 10 years. I however have not seen oncologist tet to discuss either trial or no trial. I would be interested to hear how your chemo went and how long you had it etc. As if they predict a 4% gain do you velveteen it was worth it.
