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Optima trial

5 REPLIES 5
Member

Re: Optima trial

Spoiler
I know that this theme has been quite for a while, but I would like to add my thoughts and comments . I have been diagnosed with early breast cancer and was offered the option to take part in the trial. I was given a lot of information to read before making my decision. As well as reviewing the provided documentation I also undertook my own research. OPTIMA trials have taken place outside the UK and the long term outcomes between having and not having chemo if a low score is received is identical with a difference of 0.1%. Additionally  I also work for a Russell Group University (research intensive) and I have been involved in preparing bids for research funding. The amount of work that goes into a bid is immense. Once a bid and funding is agreed, the money is released in traunches. What this means is that regular reports, which will be extensive, have to be submitted to the funding body. If at any stage the funders have concerns about the ongoing research and outcomes the funding will be withdrawn. Also the OPTIMA trial is at stage 3.  Stage 1 and 2 have been successful. If the researchers and funders at this time thought the risk was too high the programme would be withdrawn. Armed with this knowledge, I opted to take part in the trial. Today I received the amazing news that I did not need chemo. All I need is radiotherapy and hormone treatment. I am100% confident in the outcome. If you are offered the opportunity to participate please do so. Only 50% of tumours will be tested, so the probability at the moment is that you will require chemo. However, long term the research should become standard to understand if chemo is required. Chemo is an aggressive treatment with side effects and also costly. So if you are offered the option to take part please consider this carefully. Why undergo chemo if you don’t need it? Good luck to everyone who is being treated and may you all recover well.
Member

Re: Optima trial

Hi, Sorry I have only just read your message, how are you getting on?. I didn’t have to have Chemo and have been giving Hormone therapy and Goserelin injections into my tummy (monthly) they have know offered me radiotherapy, I’m not sure wether I want to have it, as there’s a 40/50% chance it will affect my implant. Did you have a implant when you had your mascemtomy?.xx
Member

Re: Optima trial

Hi Scholtz69,

 

Best of luck with your node clearance today. 

 

I’m not the original poster, but I’m taking part in the Optima trial.

 

I had a mastectomy and sentinel lymph node biopsy in early September. I’m ER+, HER2-, 4.2cm lump with macrometastesis in 1 of 5 nodes. I didn’t have a full clearance, my surgeon gave me the option of having radiotherapy to the axillary instead (plus the option of the POSNOC trial which is studying whether further treatment to the axillary is even necessary when few nodes are involved. I haven’t decided if I’m going to take part in that trial).

 

I will also have radiotherapy to the chest wall.

 

I joined the Optima trial in the hope that I wouldn’t need chemo... but I was selected to have it. They don’t tell you if you’re having chemo because you’re randomised into the control arm where everyone gets it, or if you’re in the testing arm and the Prosigna test says you need it.

 

I’ll have round 3 of FEC-T chemo this Friday, and then I’ll be half way through.

 

I have to admit, as much as I am hating the side effects, I’m glad to be having it - I want to throw everything I’ve got at this. Although I do wish they would give more information about the trial arm and prosigna results!

Member

Re: Optima trial

Hi, I have just joined up for this trial, I’m having a Lymph node clearance on 10th Dec. I’m also worried about having Chemo unnecessarily.. How are you progressing? Did you end up having Chemo?

Any information would be greatly appreciated x
Member

Re: Optima trial

Hello Nursekate

 

I was diagnosed with Grade 2 IDC HER neg ER pos - 3 cm tumour which was removed on 29th May, (they initially thought it was 6cm) had a therapeutic mammoplasty, already knew I had one node positive, after full node clearance they found another so two out of 25. 

 

Have appointment to see oncologist on Monday 25th, two consultant surgeons said I should have chemo but I’ve been told I too have to decide re this trial as I’m eligible apparently... 

 

Like you, I am really undecided, yes, would really like to avoid chemo, especially at my age (64) but I’m so conscious of being told I will definitely need it ! I’ve done a little research, and apparently this test (Prosigna) is pretty detailed, and should give an accurate result if chemo is needed, but it’s the doubt !! 

 

Would love to hear some advice from others, too.... can I ask what happened at your appointment? 

 

I hope that you have managed to make a decision that will suit you, and leaves you feeling more positive about it all, it is a totally horrible thing, this...

 

Very best wishes to you.

 

Thistle 

 

Member

Optima trial

Has anyone been asked to participate in this trial ? I have to make my decision by tomorrow and would like to hear from others before I decide . 

I was diagnosed with invasive lobular cancer in Feb this year . I have had a lumpectomy and breast reduction in April and then an axillary clearance in May . 3 out of 15 were affected , so I was asked to do this trial . My tumour was big , 6.5cm . I hate the thought of chemo and losing my hair , ridiculous I know . My hospital does not use the cold cap ! 

I would appreciate your opinions 😊.