OPTIMA TRIAL

Hi I joined the optima trial in December, I was told the normal treatment was chemotherapy, so I decided I had nothing to lose, luckily my tissue sample was tested and showed that I didn’t need chemotherapy, I don’t know what the test result was. So you could still have chemotherapy as you are randomly put either into the chemo group or the sample tested group and if they test it and it comes back that you’d benefit then you’ll have chemo. They use the Prosigma test and look at 50 different genes in the sample if it’s tested although the only way you’ll know if it’s tested is if they say you don’t need chemotherapy.

I hope this makes sense.

Diane x

Thank you Diane, did you have any other treatment as part of the trial?

Also sorry how long did you have to wait before you knew whether you needed chemo if you don’t mind me asking?

I had radiotherapy for 5 days in January, I saw the oncologist at the end of October and she said I would be starting chemotherapy on the 3rd of December, I was contacted by the Nurse in my hospital that dealt with the Optima trial and she went all through it with me, I think in all it took about 4 weeks, with me going in and signing the trial form and then they sent my sample off and 3 weeks later she phoned to say that I didn’t need chemo.

I also have to take Letrozole for 10 years. have zoladex injections for 3 yrs to stop my periods as I haven’t gone through  menopause and I also have to have Bisphosphonates by IV every 6 months for 3 years. You also get sent a questionnaire to fill out every couple of months. I just felt that if there was a chance I didn’t have to have chemotherapy then it was worth doing it because otherwise I’d have had to have it.

That sounds very similar I think, I’m just not sure about the trial versus chemo. I haven’t gone through the menopause yet either but worried about one of the lymph nodes being cancerous which they removed when they did the mastectomy. 
thank you for your response it is very helpful, hopefully when I see the oncologist and speak to the breast care nurse they will be able to shed some more light, but it appeared a quick process from what you have mentioned thank you for your support x

I had 2 positive lymph nodes, so I had a full auxiliary clearance and all the rest were negative and then had radiotherapy, I had lobular breast cancer which doesn’t respond very well to chemotherapy anyway, so doing the trial was my best option. Discuss it with the oncologist and BCN and have a good read about it, you have to do what feels right to you x

Thanks Diane, what do you mean by full auxiliary clearance sorry all the language is very new still to me. 
waiting for the oncologist app is making me very anxious as I just don’t want to delay my recovery.

thank you for taking the time to reply to my post too and wish you well in your recovery too x

I had 2 sentinel nodes positive, so removing all the rest in my armpit is called full auxiliary clearance. I had 25 lymph nodes removed in total including the sentinel nodes and 2 were positive. Ask me anything I don’t mind, hope you get your appointment soon x

Hi, I’m very confused by the Optima trial. The surgeon implied this was excellent news but I was prepared to be hit with everything to kill the cancer. Don’t get me wrong I don’t want Chemo but equally don’t want it coming back like the lady above.

im worried I will still be given the option of chemo despite the trial so really not sure what advantage it has. Guess I just want to be told yes or no. We’re you given statistics and options or just told you didn’t need chemo?

Ive had lumpectomy and auxiliary node clearance (20 nodes). Cancer is ‘only’ in one node. I have hormone positive cancer, grade 2.

Should I see the trial as a good thing? SO confused… xxx

Hi Kate, I’m waiting for an oncology appointment to discuss the stats as the surgical team told me about the trial and gave me a leaflet, they said it’s my choice or follow the chemo route, equally like you say you may still have chemo as part of the trial. I have one lymph node positive which was cancerous following a small number using sentinel lymph node removal, I now need to decide on radiotherapy or an operation for auxiliary clearance as well.  

I am confused about what is best to. I am going to ring and speak to the breast care news to get some more clarity.