Optima Trial

Hi there, sorry to be so long in replying.  My results came back at low intermediate risk of recurrence, 46 score on a range of 1 to 100. .  My oncologist had out me forward for chemo but I declined it as he said it would only give me a 3% benefit.  It may or may not be the right decision, time will tell, but I felt that the risks outweighed the benefits. 

I didn’t take part in the optima trial but paid for the Prosigna test for peace of mind.  The surgeon said I was low risk and didn’t need chemo, and the test confirmed that.   You can read sample reports on their website.  i believe the risk of recurrence score is based on, in my case, taking letrozole.  Would be interested to hear if others had been told that.

Much appreciated- thank you 

I didn’t realise you could take the test without being in the trial - that’s really interesting, thank you 

I paid 1200 I think for the test with every thing genetic.  

Thank you

Hi, I know this is a while after !

How have you been the past year ?

Did you have hormone therapy?

I've joined the study and prosigna recommended no chemotherapy. 

Currently 3 weeks in taking tamoxifen and some side effects. 

They want me to have Zoladex injections too but I'm really unsure about them.

Thanks

Hi Freshair, I was diagnosed with grade 3 breast cancer in May 2020, it had spread into one of my lymph nodes, I underwent a lumpectomy full node removal and am now on tamoxifen.  Due to covid my cancer was sent to California under the Taylor DX trial which I believe is the same as prosigna.  They were trying to avoid chemo where ever possible due to covid and without this test chemo would have been a definate.  Fortunately my result came back as a low/medium risk and chemo was considered to offer insufficient benefits.  I am now 4 years into taking tamoxifen and having a discussion with my doctor on monday and then probably my cancer nurse.  last year i went through horrendous hot flushes, as a whole these have passed or are certainly more manageable now.  I sufffer from huge lack of energy, I have had a load of blood tests taken which they say are satisfactory but when the dr rings me on Monday I will ask what tests were done and what the actual results were rather than just a general 'satisfactory', I am struggling to sleep where my legs are aching so much in the night, I have some loose teeth which my dentist suspects is a cause of the tamoxfen and i also went to the opticians a couple of weeks ago and was told that I have retina toxicity which if I continue taking the tamoxifen could cause further problems.  My cancer was not picked up by mammogram, I found a lump which then showed on an ultrasound and mri.  The NHS are only monitoring me with annual mammograms which they say should show any changes.  This year I have gone private and had an ultrasound and mri which was clear and my consultant agreed that as the original cancer did not show on a mammogram there is a good chance that any further cancer might not show either.  I am looking at coming off the tamoxifen now and continuing with an annual mri and ultrasound, whilst this could be costly i think it will be better than damaging my body with tamoxifen.

Hi Cazh24 and sorry for cutting in! You mentioned about going private and having an ultrasound and mri which I intend to do. Can you please let me know what type of mri did you opted for, just the breasts or whole body? I am trying not to think too much about recurrence (I was dignosed in June 2023) but it is always at the back of my mind. Any further information will be greatly appreciated!

Lana xx

Hi, thank you for responding. 

I've seen so much re the bad side of tamoxifen yet I've got 2 friends who sailed through it!  I know it's going to effect me more. I just don't feel right. 

Annual mri and ultra sound makes more sense. Wish they would do this rather than drugs.