Hi
Recieved my 2nd op results yesterday. Had full ANC , they found 4 nodes in total out of 15.
I was asked if I wanted to put my name down for the optima trial. Is anyone else doing this or know any information about it ?
I believe if you select to be put forward for it you are randomly selected to either take part or not. If it's a not then its chemo, rads and hormone therapy. If you are selected then it looks at the genetics of my cancer and whether chemo would be beneficial. That's about all the info I have !
Any guidance would be helpful
Thanks
J x
Hi , , you're not randomly selected either way. 50% aren't tested and are given chemo as usual. The other 50% ARE tested - their tumors are profiled using lots of markers with the Prosigna test, and if low risk they don't get it, otherwise if medium to high risk are still given chemo add usual. My oncologist thought that about half of those tested would not have chemo, and they would be the only ones to know that they were tested. Those higher risk women won't know if they are tested or randomly selected like the first group. Doctors aren't told which group either in case it affects the trial.
I think that you have to be strongly ER+, grade 1 or 2, have a tumour smaller than 5cm, and your gain from chemo should be 3-5%. Mine was 4% gain, 1 positive node, 27mm tumour, ER 8/8, grade 1-2 tumour. To be honest, I took part in thr hope that I could avoid chemo, as it really scared me and I didn't want another 5 months off work as I'm in a busy school with lots of infection risk. I had 4 x EC and 7/9 Paclitaxel chemo in the end, which wasn't nice, but I'm glad I did it!
Thank you for the reply and Information. Theres an awful lot to think about , obviously I want to ensure I minimise the risk of it returning and like yourself dont relish the thought of chemo but have sort of resigned myself to having it. I have quite a physical job that includes working with the public so I'm currently off sick but desperate to get back to work and some normality. Reading other peoples posts have given me lots of hope , some even work whilst having chemo I'm hoping I'm fit and able to do so should I need to. But then I work with the public so again like you theres risk of infection.
Thanks again for your reply its definitely given me food for thought.
Julie x
Hi ,
Yes I’m on the Optima Trial. I was diagnosed Oct 2018 and signed up for the trial just before I started chemo in January 2019. If you don’t go into the trial and have lymph node involved my oncologist said he would always recommend chemo anyway.
You are randomised so a computer divides ppl into chemo or no chemo first of all, all the ppl who are randomised into the chemo group do get chemo, the ppl who are randomised into the no chemo group have their tumours tested, the ones with a higher score, so more chance of recurrence will be put in the chemo group and those who have a lower score won’t have chemo, but you wouldn’t know the score, so if you get chemo, you won’t know if you were randomised into the first of chemo or if your tumour was tested.
I hope that makes sense haha. If you have any other questions just ask. You should also get a leaflet about it or you can google Optima trial.
It also means if you do go on the trial, you are monitored for 10 years. x x
Thank you for taking the time to reply and for the information. I'm unsure why they've said I qualify for this trial as had 4 positive lymph nodes out of a full node clearance.
I suppose i shall just have to see what the oncologist says to me when i see them.
Hope you are well on your way to recovery, thanks again.
J x
Hi J,
The criteria for the trial is
hormone receptor positive, HER 2 negative,
at least 40 years old
1-9 lymph nodes under your arm have cancer in them, if your cancer has spread to only 1-3 nodes, at least in 1 node the spread is greater than 2mm across,
your cancer measured more than 20mm, it has spread to 1-3 nodes and is less than 2mm across in each node,
your cancer measured 30mm or more but have not spread to the lymph nodes,
had grown into the surrounding healthy tissue, ( invasive breast cancer )
has been removed by surgery.
Hope that helps x x
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