Had first oncology appointment today. I have been asked to consider taking part in the optima trial. Does anyone have any thoughts to share? I am really confused and don't know what to do.
Hi I was diagnosed back in December and had my op in January and was asked about taking part in the Optima trial. After talking it through with BCN I decide to go on it. The clinical trials nurse explained everything to me and even if you sign up and the treatment plan comes and you are not sure you can opt out at anytime. Trial placed me on the normal path chemo and radiotherapy. Best advice I would give is talk it through with your BCN as they are brilliant and can answer your questions as trust me I asked a million questions!
Take care and you will find out you are stronger than you think!
I'm also on the trial. ER 8/8 and PR 8/8, HER2-, 27mm grade 1-2 (mixed), 1 node after clearance, no LVI.
Half the participants have no testing but go straight to chemo, the other half are tested, and depending on score given chemo if higher risk. Your oncologist doesn't know your results (tested or high risk) if it's chemo
It seems that some oncologists aren't strictly following the guidelines (mind did, but I've heard on this forum of people being put forward with too many positive nodes or larger lumps than suggested). I do think that it's a really good idea as chemo can cause long term medical issues in some people, and the gain can be small. I checked on Breast Predict and it was 4% average for me, but as I was going through chemo it updated to 3.5% at 10 years. I'm not sure I'd have done it for that amount, but struggle with letrozole so it's an added bonus, even if it's left some joint and nerve pain, higher blood pressure and I've shrunk an inch! I didn't want to wonder what if? At least with the trial you might be tested and if they find there isn't enough benefit it's a medically informed choice, and those tests are about £2000 when done privately!
Good luck with your decision, and let us know what you decide:)
“Remember to look up at the stars and not down at your feet. Stephen Hawking,
I decided not to go ahead with the trial. If there had been no spread to the lymph nodes then I may have decided otherwise. I went for chemotherapy. I have had one cycle so far, two weeks ago. There has been no sickness. I have been tired and had mouth ulcers, but other than that I have felt ok.
Hair loss just started today. Third week is going fine. Feel like myself again. Hopefully the next cycle will be just as easy. Touch wood.
I’m glad to hear your first cycle has gone well with not too many side effects. I was told the hair loss would be around 2 weeks after your first cycle so that sounds almost spot on. How are you coping?
I can totally understand why you didn’t proceed with the trial. I had many conversations about it even after my results came back but I knew deep down I didn’t want chemo so I choose to go with it. I suppose only time will tell if I made the wrong decision.
I’m in limbo at the moment as I can’t quite get past my surgery & onto radiotherapy. I’ve now developed a skin reaction to the dressing & my body is a mess. It’s so itchy & sore I could scream and cry at the same time. I keep thinking it was a blessing that I did the trial as my chemo would have either been delayed or stopped due to the surgery setback. Every cloud & all that! You’ve got to laugh or else you’d cry! xx
