My partner has just been diagnosed with Extranodal KT/T cells lymphoma Nasal type. For 6 weeks he had a swollen face, numbness, pain, weeping eye. Thought originally dental. Lots of head scratching then biopsy and this diagnosis. He's 55 years old. Been told roughly 20 people in UK diagnosed every year. Can anyone share any experience of this please? Googling isn't helpful

Hi there first of all sorry to hear about your partners diagnosis. I would say don't Google, the information you read can be out of date and in my situation did not really help. I found just listening to my consultant was best. 
The treatment I expect your partner will be on is SMILE ( think that's still current treatment plan) likely starting with radiotherapy which I had for six weeks followed by chemotherapy (4-6 courses). Overall it took 9 months and it was tough but I am now 2 years in remission with one more review end of this year and all going well I'll be discharged.

I don't want to bombard you with information as I'm sure this diagnosis is still raw but please come back to me with any questions you have as you progress through the treatment. I struggled initially as couldn't find anyone that had been through thhis. My consultants first words were 'we are planning to cure' so that in itself gave me confidence.  
Stay positive, it can be treated.

Paul.

Many thanks for your reply Paul. I am so pleased to hear you are doing so well. Can I ask what stage your cancer was when they discovered it? My partner is having to wait 2 weeks now for a CT scan to determine the stage, then decide on the treatment plan. Just worry that as it's too long a wait!

I was stage 1 - it was only found locally which was a big bonus. I had symptoms for about a year before I went to GP much to my partners dismay. 
I was the same waiting for CT scan but once staging etc was done treatment moved swiftly. I was about 6 weeks from result of biopsy to starting radiotherapy. 

I'll keep my fingers crossed.

The symptoms you described I had but at different times which is probably why I left it so long.

If you need any advice once treatment starts feel free to message.

Also look after yourself as I know how tough it was for my partner.

Paul

Thank you Paul. Much appreciated.

One more question just now Paul, was all your treatment on NHS? My partner was wondering if things could move quicker if he went private. Certainly for the initial CT scan?. 

P.S. would be good to have some direct contact with you rather than go through this public forum. Not sure how we could go about this, or if indeed you would be willing? I promise we wouldn't bombard you with questions! I feel it could help him during the treatment stage to ask you for the odd insight!

Hi, absolutely no problem to discuss. Can do by email, phone, FaceTime or skype whichever you prefer. Anything that will help.

All my treatment was in the NHS (Scotland) which I would say was nothing short of excellent. In my situation I would not have been any quicker privately but I am aware not every area will be the same.

I would speak to your consultant and he/she can advise if CT privately would speed things up.

paul

Hi [@Shaloolah]‍ and Paul, 

I saw you were thinking about sharing your contact details.

This isn't allowed on the forum but you're more than welcome to do this via private messaging. To find out more, just click here.

Kind regards,

Steph, Cancer Chat Moderator