Optima trial..

Hi Tina, 

I'm also taking part in the trial, and my oncologist said that in the early trial (the one before this one) about 20% of those tested (50% of total taking part, so 10% of total) were shown to need chemo,  and that oncologists were not told who was randomised and who was assessed as needing it becsuse "we are biased towards our patients'.  It's being run from UCLH, where she works 3 days a week with those running it and where ther samples are tested.

I was also told to have chemo (1/11 nodes positive with level 3 cleatance.  mastecomy,  clear margins, no LVI). I was totally on the fence about what to do and had concerns both ways so it pushed me into chemo with an average 4% gain in 10 years. My surgeon thought it was gone and all taken in one surgery which has recently shown to be good, so on paper it looked good,  but who knows? 

So far I've only had the first questionnaire after 4 months, but the leaflet I was given and signed said there would be follow up to 10 years,  amd first results would be published after 3.5 and 5 years. I live near both hospitals, and figured if it means women who are ER+ with 1-3 nodes positive can be tested and maybe avoid chemo then it's worthwhile.  I wish I had that option (or my oncologist would take a sneaky look when there to see if I was tested!). I've been thinking of stopping the paclitaxel which she switched to weekly but is still giving me bad headaches, blurry vision and bad stomach pains.  The theoretical benefit after EC is 1.4%, and she's said that I can stop or continue with the weekly doses,  but we don't know if my benefit would be more as she hasn't the results...grrr...

Margaret x

Hi Margaret,

Thanks for replying. It seems so long ago I signed paperwork I can hardly remember.

I had EC then Docetaxel after mastectomy I then went in the had radiotherapy. 
I was undecided really after I got the call i was randomised into the chemo group I thought about ditching the trial, however like the oncologist told me, he would advise chemo as standard as I had 7 out of 21 lymph nodes involved, but he gave me two weeks over Christmas to decide and I watch my kids and thought I’ve got to throw everything at this so decided to stay with the trial.

I have my oncologists secretary’s email so I could always email her if I want to know about it I guess x x

I know.  It was a  really hard choice to make.  Iwent to ther chemo suite  before deciding:) Can I ask why you had radiotherapy with your mastectomy, or was it on your armpit area? I thought it wouldn't be needed with a mastectomy,   but my oncologist said she wasn't sure and would refer me to the radiologist after chemo when I last saw her,  which surprised me a bit!

How do you know you were randomized rather than assessed? I wonder if they do know which it is.  She said about not being sure which o was when I first questioned the paclitaxel a month ago,  then said I could drop it a couple of weeks ago! I was meant to have been given a trial identity number but haven't,  and wondered if that could be back tracked,..... I'd love to know, but there's also the fact that Proforma (or any profiling test) could be wrong. 

Have you started your tablets yet? Good luck with the next part of the journey x

Hi Londonmumof2,

Sorry just seen this.

I was just told it’s procedure.  My oncologist said it just in case a rogue cells was about that area but also I had lymph nodes involved so I had the rads up to my collarbone too.

Regarding the Trial it’s a blind trial so the Oncologist don’t even know if you were in the lower or higher score group. The nurse explained to me that all people doing this trial are randomised by a computer into two groups, one group people get chemo, ( their tumours samples are not sent to be ‘scored’) the other Group Of ppl have their tumours samples tested and depending on the outcome if it’s a low score those ppl don’t have chemo, the ppl with the higher score are then put in for chemo with the first group who didn’t have their samples tested ppl. 
I hope makes sense.

I started taking Letrozole in May x x

Hi Beachwalker19

Can I ask the number of nodes involved? I had 1/11 from all three level levels,  found as a sentinel.  I'm hoping that I don't need it! My clearance report said TARGIT, which in secretly hoping meant intra operative radiotherapy during surgery,  by haven't seen my surgeon and my oncologist didn't know as she's focused on the oncology side. I'll have to wait and see! Margaret x

Hi, Margaret,

I had 7/21 nodes involved. From what I remember, radiotherapy was always on the cards, then later chemo was thought to be beneficial as a precaution so I had that first.

Tina x