Anyone know anything about POLE testing?

Hi KT89

I was ready to start radiotherapy at the beginning of September I had had all the planning done and was ready to go . I got a phone call from my consultant to say that the POLE test had just come back and I had a POLE genetic mutation which meant that radiotherapy wasn’t going to be needed. I was shocked as I was stage 1b grade 2 with extensive LVSI which means the tumour was fairly aggressive. Apparently this mutation gives a better prognosis even if the tumour is high grade. My consultant sent me some articles about the mutation and as far as I can see this is quite a new discovery. I was given the weekend to think about my options and decided not to have radiotherapy at the moment. This means that I will still be able to have it in the future if necessary although my consultant said immunotherapy is offered if there is any spread. I am having 3 monthly CT scans and follow ups at the Royal Marsden where I know they have a genetic research department . I hope this helps a bit, I had my first CT last month and all ok so far!

Linda

Hello Lin0506 

Thank you for your very informative reply. It is helpful to read about your experience. 

It makes more sense to me now. So it was your decision whether to have radiotherapy or not. 

Wishing you all the best. 

Thanks KT89

Let me know how you get on it would be nice to know someone else with the mutation lol

Linda

Hi KT89

I had THBSO at the beginning or the year and told I had Grade 3 Stage 1a Adenocarcinoma (an aggressive one). My tissue was sent for POLE testing. I kinda assumed it would be positive as I had made such a good recovery and I had made up my mind that adjunct radiotherapy was not for me. Wrong! It came back negative, so I changed my mind and had 4 sessions of brachytherapy (internal). It was actually not a problem, but had my POLE been positive I wouldn't have had it and, personally, I would have been confident with my decision.

If the POLE test is NOT mutated then radiotherapy is indicated.

Thank you Rosiexsam 

So a "POLE is mutated" result is a good thing! I am learning a lot here. Thank you all for your responses.

I will wait and see - another two weeks until I find out.

Sending my best wishes to everyone.