Peri neural invasion ???

My (non-medical) understanding of how the cancer can be gone when they mention peri neural spread, is that the cancer and any affected nerves have been successfully removed. However, there is a possibility of stray cancer cells as a result of the previous peri neural spread, so the belt and braces approach is radiotherapy to catch any potential rogue cells.

You will certainly get plenty of advice and support on here if you have radiotherapy.

It means that on the surgically removed tumour they found cancer in the space around a nerve. Unless they removed the whole nerve where the tumour was they can’t guarantee that they have removed every single cancer cell. ACC spreads along nerves so having radiotherapy makes sense. 
Yes radiotherapy is tough (but doable)and it’s a horrid decision to make but what is the alternative? . 

I’d go back to the surgeon and ask him to explain so that you understand. It’s what I would do. 
I had six weeks of RT which was difficult to get through but I did and 12 weeks after I finished I was fairly pain free and eating well. 

Thanks 

I’ll be honest I feel quite anxious about it all x

Good to know you were able to eat properly afterwards although it took a fair amount of time. I already have trismus and would hate it to get worse but sounds like it will :( 

thanks , I’m just in shock, my tumour was only T1 so I didn’t think I’d need anything other than surgery but yeah seems ACC does tend to grab onto nerves  

I hope you can get to the bottom of it and find the best thing to do. It's not easy is it?

There's masses of help here to get you through. 

Thank you  

Hi Radiotherapy is hard but I did 7 weeks combined with chemo and I am a wimp I cry if I break a nail. But the alternative was I do nothing and we all know those consequences l I wasn’t prepared to die just yet I had too much to live for. Now 3.5 years later and living my life ok there’s thjngs I can’t eat notably spicy food and I get burning tongue from some foods. But next month I will be going  on my 9 th    trip to Spain  since treatment finished. I first went 8 weeks after I had finished treatment it was my hubby 60 th birthday. It was hard but I did it. Now I cycle up to 60  km a day when we are there. We will all help where we can, don’t dismiss it please. . Of course at the end of the day it’s your choice. 
Hazel x

Good evening ER1, this is a very common practice, my consultant used to compare it with pulling up weeds where we hope all the root system comes with the weed but as we know its not always possible. If you have been advised to have it i would recommend you go for it. I dont know where you were told its horrendous, it varies from person to person and which area is treated, i found it bearable and did not suffer that badly, maybe because mine was targeted on the floor of my mouth. Some consultants give you the option to have it straight after but some say wait and see and then if it comes back you still have the option for the radiotherapy. But i would always go with the advice of my consultant so please discuss all possibilities with him/her. Good luck with your decision,

                                                                                                  Chris x

Thanks, I contacted the CNS today as I’m struggling to understand. I had 2 ops, first in September as they thought it was benign then December for big op as histology from 1st op showed ACC. 
it seems the second op showed no cancer at all. The perineural invasion was from the 1st op. So in theory I am cancer free. She said they offer radiotherapy as a belt and braces approach because of the type of cancer as this , as you know, tends to follow nerve roots. 
The surgeon advised me to have radiotherapy but the CNS said speak to oncologist then decide whether to go ahead or wait and see. 
so I’ll see what he says

I’m so pleased you have made an excellent recovery after all you’ve been through, reading this has boosted me so thank you x

Elaine

Thanks Chris 

good analogy with the weeds! 
good to know it’s common practice (somehow that sounds a bit wrong saying it’s good)! 
thanks, yes I’ll wait and see what they say but good to hear you didn’t find it too bad. It gives me hope that if I have it I may be reasonably ok too. In a way I prefer the constant to choose if we have treatment or not rather than us, they have the knowledge, skills and experience don’t they. I don’t want to make the wrong decision. 

Elaine