Hello all

Hi and welcome from me.  I had surgery 4 1/2 years ago (and subsequently) and had chemoradiation in the last 6 months.  I had 2 neck dissections and my tonsils removed.  They went to remove a tumour in my tongue but when they went in it had gone.

6 weeks is early days - I wish they would tell the truth!  You will have had a relatively quick initial recovery but I found that I was back to my new normal after around 18 months.  That is not to say that life is terrible for 18 months.  It was slow and steady progress to get there.  After surgery I have lived a great life.  Travelled extensively and eaten very much what I wanted.  The biggest long term issue was lack of saliva, but I could live with that.

It is great that you don't need CRT.  Although that is no easier than surgery it puts a different spin on things in recovery.  Just make sure you go to every check-up and if you notice anything worrying in between don't be afraid to ring your CNS to discuss.

Thanks. I feel lucky not to have CRT and ungrateful for complaining about my symptoms. My main issue is talking and dry mouth - it’s tiring and I’m struggling with lots of words. My job involves lots of public speaking and I’m very anxious that this is my new norm. Everyone keeps telling me 6 week recovery - will this stuff keep on improving?

It should keep getting better.  I don't think I suffered from speech issues from the surgeries.  I do a little now post CRT.  That is mainly to do with my throat being sore and it comes and goes.

I remember this guy - Gavin - who does UTube weather forecasts.  He was very worried pre treatment about his speech as it is obviously key to him.  I think he does pretty well in his videos now.  And the forecasts are normally spot on!

GavsWeatherVids - YouTube

Hi there. I too had stage 2 hpv tonsil cancer. Had both tonsils out ( Tors) end of march followed by oropharangectomy ( Tors) and neck dissection end of April as part of Pathos trial - no CRT needed. I too was told 6 weeks but I'm still in a lot of discomfort. I went back to Derriford in Plymouth a few weeks ago for a check up as it felt like something was constantly catching at the back of my throat making it really sore. Nothing was found just part of the healing process - it can take up to a year they said. Not sure if you had a neck dissection as part of your treatment but that's still completely numb and sore where I have sensation. I work in a school and I went back for a month before the hols started and I find my voice gets tired easily. I'm seeing a speech therapist locally at Treliske in Truro to give me some voice strenthening exercises. I can eat most things now although dry meat is still a challenge as I find my jaw tieres quite easily. Frozen fruit protein smoothies I find soothe the throat area for a bit.

hi Hazel, I live in Cornwall but when I got my diagnosis I agreed to be part of the Pathos trial which is looking at reducing the treatment for certain stages of hpv cancer and the closed trial hospital to me was Derriford 2 hours away. Luckily they caught me early so I'm in group A of the trial which was the operations followed by lots of follow ups for up to 5 years. Mr Williams is my consultant at Derriford and I saw Mr Malik a couple of weeks ago and he's lovely too. Everyone at Derriford is lovely. Initially when I saw the consultant ENT at Treliske she said they were cysts on my tonsils and nothing to worry about but thankfully she took a biopsy to be sure. When I spoke to her after the diagnosis she did say that she nearly didn't take the biopsy as he was so convinced they were only inclusion cysts - scary stuff. Best wishes

Sorry Coco cat

I got confused with where I had replied and where I hadn't (still very new on here and trying to keep up with all the posts and finding my way around.)  I don't know how many time my reply went up, but I am guessing a few!  Yes, I finally realised that you are not in Plymouth so I tried to delete my original reply and messed it all up.

Anyway, I too was told initially that it just looked like a lymph node was enlarged and that it eas probably due to an infection.  However, they did a nasal endoscopy and ultrasound and then decided to do a fine needle aspiration to 'be on the safe side.'  that is when I was called back and Mr Williams told me I had a Squamous Cell Carcinoma and that I needed to have the MRI and PET scan (which I am having done on Wednesday)

My consultant is also Mr Williams and I am seeing him on Thursday to discuss the results of my MRI and PET scan.  I am now panicking in case it has spread (I am imagining every little twinge is down to it spreading.)  I MUST stop 'catastrophising' and just get on with life (there are people on here going through an awful lot worse!)

Anyway, I might see you around at Derriford sometime.

Good luck.

Hazel x

The waiting is definately the most difficult part. Once you have a treatment plan you can really start to focus on getting through. Ask lots of questions and write them down before you go as it's easy to forget. Your in good hands, best wishes

Thank you Coco cat

Hazel x

Thanks - treatment sounds exactly the same. I’m a university lecturer and v worried about September. I can eat pretty well but tire before I’ve finished. Same with talking and I’m self conscious of my voice. Don’t feel I could lecture for 2 hours      . I feel discomfort in my throat. Has talking/eating continued to improve? I also had a neck dissection - it’s numb and getting more sore I think as the feeling is coming back. Has your taste been affected?

Hi Woodz. I went back to work 8 weeks after my second op and the speech therapist was surprised I was going back so early. I work in a school but only for 2.5 hrs a day as support staff and I did find it hard to project my voice especially with 100 noisy kids in the lunch hall. I would push to see a speech therapist who will give you lots of voice exercises to do ( I have swollen vocal cords ATM but they said it could be due to hay fever). My voice still tires very easily and my throat is sore. My neck is incredibbly sore around the scar and numb. they told me the sensation may or may not come back. My lip was a bit saggy too at first but that has gone now and my taste was way off after the op but that's fine now. Some days I get a really strange metallic taste in my mouth like I've been sucking on old coins - not sure what that is. Regarding eating I can eat most things now but my jaw still gets tired quickly especially things like crusty bread or meat. Work will have to make reasonable adjustments for you so a conversation has to be had if you feel you can't lecutre for a full session.