Optima Trial

Hi

This is what I've discovered on the Optima trial:

"The OPTIMA trial seeks to advance the development of personalised medicine in breast cancer by using multi-parameter tests to identify those women who are likely to benefit from chemotherapy and sparing those who are unlikely to benefit from an unnecessary and unpleasant treatment."

Ordinarily, it is my understanding that chemo is automatically offered when nodes are affected, so presumably your oncologist is looking at whether your particular results would prevent you needing it? 

Hopefully someone else can come onto this thread now I have 'bumped it up' who may have participated in the trial.

Kindest wishes,

Thank you for your reply, I was hoping to escape Chemo but it does look inevitable, I am being sent the trial details before my oncology appointment. 

kind regards 

I sense a move now to try and find out those patients that chemo would provide no or little benefit to. I had 2 positive nodes and am not being given chemo. I have lobular breast cancer though which may be different to you. The trial sounds interesting x

Hi mine was lobular breast cancer also but found in 4 out of 16 nodes also. 

Where are you based? I had no choice but to accept no chemo as it would give me "little benefit" as my cancer was lobular. Just have to trust the professionals but it's hard.

I’m in Shropshire x

Hi 

I was offered the optina trial , I had a lumpectomy and a full Anc 4 out of 15 nodes affected. 

After speaking with my oncologist I made the decision not to go on the trial. My reason for this was based on the % of recurrence.  She told me I had 80% with no chemo and 88% with. Although it's only a small increase it was one I needed to take. I'm 47 and a single mum to a 22 & 17 year old lads. My oncologist gave me food for thought and I'll share with you what she said. She said that if the cancer was to come back it possibly wouldn't be in the breast which meant it could be lung /bone etc which are treatable not curable and how would I feel if in 5 years time I was sat confront of her again with secondaries which may of been avoided by not doing the trial and opting for chemo. So for me it was an easy choice and I decided to throw everything I'd got at giving me the best chance. I was disappointed that I couldn't give something back to help others because without people doing trials then we wouldn't be in the position of bc being so curable for the many people who fund themselves in our situation. However you have to do the right thing for you. My onco said I'd made the right decision for me. 

Hope this helps. 

Julie 

Thanks Julie, I have a bit to think about, the thought of chemo scares me but I’ll do whatever I need to do. 

Debbie x

Hi 

To be honest I know what you mean , I've had 5 out of 6 of my cycles so far. If I'm honest I've managed better than I anticipated. I had 3 x ec and 3 t . One more T to go which is this  friday pending on bloods. I've found it doable and haven't suffered to badly. The first week I've been tired and had a few other side effects but weeks 2 & 3 I've slowly got back to normal. Doing housework and exercises. 

So if its needed its not as bleak as you might imagine. 

Julie x

Hi Debs_I, 

Have you put your data through Breast Predict? https://breast.predict.nhs.uk 

It's the one currently used by most oncologists in the UK. It doesn't include LVI which would make chemo more important to have (it would say on your pathology report)

I'm in the  Optima trial,  which I did with a 2.7 tumour,  ER and PR 8/8, no LVI and 1 positive node after level 3 clearance.  My gain from chemo was 4.1% (now updated to just 3.6% gain) which isn't a lot, but I figured if I didn't do it at least it would be after testing.  In the end I was given chemo, but as 50% of participants are automatically selected for that as standard treatment I know that  for me it's thr best choice. I'm really struggling with Letrozole (4.5% gain) so if I don't perfectly take it for 10 years then the chemo will have improved my chances. I have two daughters so want to be around for them as  long as possible.