Left tonsil and left lymph node.

Hi Montus, you're definitely on the start of a longish journey now through treatment and then recovery, but the MDT will take care of you along the whole process. My best bit of advice would be  to do everything your team tells you, from the face and swallowing exercises to diet especially. You haven't mentioned if you will be fitted with a feeding tube? For me, at least, this was essential, especially when eating and drinking became very difficult due to the radiation. But I think some others on here may have coped better than me!

I don't know if it will be of help but I chronicled everything from diagnosis to remission and back again in a blog (here), and a quite a few others have kept blogs too, all very different, personal acounts which  I found incredibly useful to read when going through my own treatment.

I think it's safe to say that the chemoradiation therapy is not easy, but from your staging it looks like you have caught your cancer early, which is a huge plus in terms of outcome. Wishing you all the best, Anson

Hi Montus and welcome to the community. Anson has it really. 

The best thing at the moment is to have a look at the blogs. Hazel  RadioactiveRaz has a good one and mine is linked at the bottom of my post. I am a three plus years survivor of a T2 tongue tumour. I didn't have chemo though. 

Hazel and I have ten/fifteen years on you at time of treatment. We did it!

Don't fight it. Go with the flow, look after yourself and it's doable a day at a time. We are all different. I needed nasogastric tube feeding for 8 weeks but by six weeks post treatment I was getting through it and by twelve I had turned a corner. Some people manage without. Whatever you do, don't be brave, don't suffer. Take your analgesia by the clock when you finally need it.

One of our other forum members, Mark,  who still dips in  now and again has a good blog in his profile MarkEL

Just click on his name here.

Stick around. There's lots of help and support here.

Let us know how it goes and good luck

Hi Anson. Thanks for the advice. As to the feeding tube this was not discussed at my meeting last week. There were so many things going round in my head at the time it was a question I didn’t ask. At the moment the Dr is away for 10 days and might not be able to respond to emails but I will put this on the list. In the meeting at the end I mentioned I had private medical cover and currently looking into the provider he mentioned called Genesiscare.. https://www.genesiscare.com/uk. In short this seems to be all the same Dr’s but in a different location.  Any thoughts?

Hi Dani. Thanks for the advice. I read Anson’s complete blog and will look at the others you mentioned. 

many’s thanks.

1. T

Hi I’m Hazel aka RadioactiveRaz I’m 4 years post radiotherapy for tonsil cancer with several affected lymph nodes happily living my life as Anson and Dani have said it’s not easy but if I can do it anyone can. I had ng tube fitted reactively as was my trusts policy t was to be if needed and I needed it.  On plus side it was oit  week 3 of recovery I was  treated at Leeds cancer centre NHS I can’t fault my treatment. I can’t comment re private medical only to say over  last 4 years I’ve known one or two who have gone down that route their chemo was mostly private but radiotherapy was at nhs hospitals and sometimes there was crossover issues with regarding some aspects of treatment. Nothing insurmountable but just niggles. 
Have a read of our blogs  just remember we are all different yet the same. I Was  T2N2NM.Intoo had no symptoms apart from lump in collar bone I had just completed 1100 km cycle rides in Spain fittest I had ever been. 

Plus welcome from me to the club none of us wanted to join. 
Hazel x

Hu Anson  Good to hear  from you congratulations and well done in your latest ultra marathon.Onwards and uowards hope the immunotherapy is still going well.

Hazel x

Montus said:

I mentioned I had private medical cover and currently looking into the provider he mentioned called Genesiscare with a centre in Oxford. https://www.genesiscare.com/uk. In short this seems to be all the same Dr’s but in a different location.  Any thoughts?

Hazel and I have seen a few people through this via private medical care. There’s  no doubt that the personal attention you get through acute treatment is more comfortable but there has been some disjointed approach. Genesis seems to have its own RT rather than using NHS facilities on a private basis so maybe this won’t happen. 
One of our ladies had her chemo at home. 
Where it has fallen down is quality of post treatment care , especially if another department is needed to intervene  

The doctors will be the same. These private centres don’t train their clinicians. They rely in the NHS to do it. 
Personally I feel that once  in the NHS system I would stay there. 
Private care us much better and speedier for diagnosis. 
I cant fault the NHS. My care was exemplary and seamless 

Hi Dani. Thank you again for the advice. I spoke to them today and am going to pay them a visit. I also found out today from the medical report that the diagnosis P16 positive SCC in the left tonsil. Looking at another thread this appears to be a marker for HPV which might make this more respective/responsive to treatment. Hopefully I have understood that correctly.

Hi Montus. Yes HPV positive oropharyngeal cancers respond very well to radiotherapy, with a cure rate in excess of 90% at five years often quoted (stats are useful sometimes). Any chemotherapy serves mostly to sensitise the cells to the radiation. I didn't have chemo which seems to be reserved for patients with nodal spread and I had none. 

Best of luck, let us know how you get on

One tip...make sure you have all the possibilities for aftercare...physio, lymphoedema clinic, dietician I including specialised liquid food if you need it...and most of us do) and speech and therapy covered by your insurance company from the outset so that you don't have to chase them while you are concentrating on treatment/recovery

I'm off to Berlin at last..... Covid, train strikes and EasyJet notwithstanding to see my daughter this morning for a week so will dip in and out to see how you are all doing

Hi Hazel. Thank you for all the advice.
All of your blogs are really helpful and easy to share with my partner.
It goes without saying that she is very worried at the moment.