Thank you so much for your post. You are not alone in finding it difficult to go along with science when you are part of a clinical trial. As you say, the Optima trial is about who will benefit from chemotherapy and being told that it is unlikely, in your case, can be really difficult. I understand from your post that you have already had prostap and are due to have a course of radiotherapy and letrozole.
Talking to others in your situation can really help and its good to see Michele has connected Although our Someone Like Me service might not have a volunteer who has been on the Optima trial it might still help to chat with someone who has faced a similar decision . We can arrange for one of our volunteers to talk to you by email or telephone. Our volunteers have had a personal experience of breast cancer and are trained to provide support.
You can ring the Someone Like Me team on 0345 077 1893, or email them firstname.lastname@example.org so they can then match you to your volunteer.
As you know, we also provide an on line discussion forum. You may want to start a new thread to see if others want to post about their experiences.
Do call our Helpline if you would like to talk this through or have any further questions. Your call will be confidential, and the number is free from UK landlines and all mobile networks.
The number is 0808 800 6000 (Text relay prefix 18001).
Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.
Breast Cancer Now Nurse
This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.
The nurses will probably reply tomorrow but I have seen in previous posts that they don't have anyone who is on the Optima trial within their "someone like me" service.
I am on the Optima Trial. I was diagnosed in September 2017. Like you I did lots of research before enrolling and fell into the group that got tested. I accepted and consented to chemotherapy before joining the trial and thought if I still needed chemo or wasn't tested then at least I help other ladies going through breast cancer in the future.
Please also bear in mind that its not a new test just new to the NHS.
Apart from having lymphoedema in my effected arm (and breast) I am healthy and will be coming up to my 3rd year anniversary at the end of the summer.
I'm happy to chat with you.
I am taking part in the Optima breast cancer trial after having been told right from the beginning of my treatment that I would need chemotherapy as my cancer is oestrogen and node positive.
I have done a lot of research into the trial and basically ended up taking the advice of my oncologist that it was the best thing to do.
I have has my results back now as I was in the testing arm of the trial and I have been told I will not or rather I'm highly unlikely to benefit from chemotherapy.
I had a prostrap injection 3 weeks ago and I will start 15 sessions of radiotherapy this week and I will start Letrozole as soon as I've had the blood test to show I'm in the menopause.
I would love to find other people who are in my situation who have been brave enough not to opt for the chemo anyway. It's a pretty tough decision to make to go along with science that u know is so close to being proven but not quite yet.
I know I'm making the right decision with the amazing science and knowledge which is available st this time but I'd love to chat to other people in the same position as me who are on this trial.