Optima Trial

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First I'll explain my story...

I was diagnosed with Grade 2 invasive lobular breast cancer last July - a barely perceptible lump which they were surprised I found. 

I had a lumpectomy and the sentinel nodes were removed, the nodes were positive and the margins weren't clear. 

I had a further wide local excision and opted to have my lymph nodes removed. The cancer fortunately wasn't found in any other nodes but the margins still weren't clear.

I opted for mastectomy next as at this rate I wasn't going to have much breast left anyway (!) and this was done on 5th January. 

I was surprised that chemotherapy was the next stage as a preventative measure - to me it seems more drastic than 3 operations! 

Because of my age (41) , being premenopausal and the involvement of initial lymph nodes I've been offered the opportunity to take part in the Optima study- has anyone had any experience of this? 

It seems if I take part there is a small chance I could avoid chemo, which at first sounded great, but on reflection at least having chemo would be a "belt & braces" approach. 

Many thanks 

  • Is this the Prosigna testing which predicts Risk of Reoccurence??   If so, then yes, I’m currently awaiting the results of my test and suggested treatments.  It’ll either be chemo and rads or hormone treatment and rads.   I’m 64, post menopausal and hoping that chemo not recommended. 

  • Hi, it is the Prosigna test - Hope the results come back favourable for you x

  • Hi there, I’ll let you know.  Results next Friday eek.   It’s been such a long haul. Mammogram early November, op 12th January.  

  • I was offered the Optima trial too. Like you, I was torn between wanting to avoid potential harm from chemotherapy if it wasn't necessary and doing everything possible to avoid recurrence (I am grade 3 stage 2). In the end, after much angst, I decided not to take part. It is, after all, a trial. Although all the research to date looks very promising about the test, the researchers do still need more results to prove the test's accuracy. Hence this trial. Just to underline this, the literature I was given about the trial does say that there is a risk that some cases where the cancer goes on to recur may be missed. For me, that was a risk too far. However, I am fully aware that it is a very difficult decision and I wouldn't claim my decision as being the 'right' one. I genuinely felt that there were serious drawbacks to taking part as well as not taking part. Not sure that helps but I do sympathise! 

  • One of the other factors that influenced my decision was that apart from breast cancer, I am otherwise fit and healthy and felt that I could cope with chemotherapy. That has, in fact, turned out to be the case. I don't of course know if I will get any serious side effects from it in the future but at least during treatment I was ok.

  • Many thanks for your comments and Ochno please let me know how your results go. 
    I decided to go ahead with the trial - it sounds like the most likely outcome is chemotherapy anyway and I can withdraw from the trial at any point if I'm not happy. 

  • I will do, a week to go till D day.  I think the good thing is knowing what you’re dealing with.  I’m hoping no chemo recommended and have it in my head I’ll only accept it if I turn out to have a high risk of reoccurrence. 

  • Hi ochno- I know your post is quite old now but I am just making the decision of whether to take part in testing or not. What was you treatment outcome from the trial? 
    many thanks 

  • Hi Goldiewsm - hope it's useful to update on my experience, I decided to take part in the trial and the outcome was to have chemo. 
    10 months on from my original post, I have been through 16 weeks of chemotherapy (one session every 2 weeks) followed by 15 sessions of radiotherapy (daily every weekday for 3 weeks) and ongoing hormone treatment. 
    I'm glad I took part in the trial, although I think I'd resigned myself to having chemo anyway. Hope this helps, happy to share any further info if useful x 

  • That is really helpful - thank you! I am kind of resigned to chemo but think the trial would be useful if there is a chance I don’t have no matter how slim. 
    much appreciated!