Telephone call today

Fab news I hope there are celebrations on the cards this weekend x

That is wonderful news! 

Delighted for you  

That's what happened with me! I'm so pleased for you x

Can I ask what they told you.  I'm in total shock. Can't get my head around it.   She said excellent prognosis??

That’s what I have as well I was due to start radiotherapy in 4 days back in August last year. I still can’t quite believe it! Celebratory weekend for you! 
Linda xx

What happens now then regarding follow ups?. 

I have 3 monthly CT scans and then an appointment for results and an internal exam. When I spoke to my consultant a couple of weeks ago she said she’s going to review that when I’m a year post op. Apparently because the POLE mutation is a recent discovery there are no set rules and some hospitals have different follow ups.

Linda xx

They basically said there is a 4% chance of recurrence after radiotherapy but a 1-5%chance with the positive pole. I feel a little concerned as I was grade 3 but get offered no scans, just patient led follow up phone calls

My only real concern is I have LVSI but she still said I didn't need the radiotherapy which feels strange 

I do find it quite surreal