Hi Jon welcome to the club that no one wants to join I am now 18 month post radiotherapy for tonsil cancer with several affected lymph nodes I was T2N2NM h p v 16+ .Are you h p v or haven’t you been given those details yet the h p v factor can have an effect in dinal outcomes .I wasn’t a candidate for surgery as  my affected  lymph  nodes we’re too close to areas to,operate on so it was chemo Rad me with the back up of surgery if it didn’t work and the risks that involved .

I had 35 radiotherapy and 2 out if 2 chemos 3 rd ine cancelled as lumps had gone .

i have a blog www.radioactiveraz.wordpress.com 

give it a read it may help it’s brutal no use lying but I did it and I am a wimp 

keep in touch Hazel xx

I had a tumour removed from under my tongue on the 8th Jan., they also took out several lymph nodes from my neck,  really as a precaution.  I'm spot on now, back to work next week.    I had the great news a couple of weeks ago,  no further treatment required.   I wouldn't say that following the op wasn't a bit uncomfortable, but it wasn't as bad  as I was expecting.    When I was told I had a problem, my surgeon suggested surgery, which he assured me was the best option.     No one can decide for you,  but it seems like you've pretty much made your mind up, going for surgery sounds the way to go. 

Regardless of your decision, I hope everything works out well.   Cheers. Colin. 

Hi Hazel

Thanks for your reply.

They don't know whether I'm HPV + yet. Should find out soon. However the consultant tells me the choice I have stands either way and the prognosis is good regardless. Just even better if I am HPV+ I suppose.

If I have to have radiotherepy then so be it but I feel that if there's a 50% chance of avoiding it, I should take it.

Jon

THi Colin

Thanks for the reply.  That's encouraging that you didn't need follow up treatment.  Were you also told there was a chance you would need it? 

My consultant said they would remove some lymph nodes as well, purely as a precaution as I'm currently T2 N0.

Jon

Hi Jon don’t blame you re surgery 50/50 decent odds ,good luck and let us know your decision s and how you get on.

Hazel x

Jon, the cancer was quite small and my surgeon was confident that he could remove it completely without the need for more treatment. To be honest, the surgery to remove the lymph nodes took the longest to recover from,  as one side of my neck kept filling up with fluid.  He really did a great job, as did all the staff,  I'd never been in hospital before,  but I wouldn't worry at all about having an op again. 

Let me know how you get on.  Take care,  Colin. 

Hello Jon

11 months ago I was in the same position as you with tonsil cancer and facing the same choice. I opted for surgery as single modality treatment. They were to remove my neck lymph nodes first despite no sign of cancer but just to be certain. Had any of these tested positive the throat surgery was to be reviewed and likely revised in favour of radiotherapy as the neck would indicate some small spread. I could not find anyone who had just had surgery for tonsil cancer so I’m introducing myself to you as a resource (and also a friend).

Fortunately all went according to the original plan. I had opted to keep radiotherapy in my back pocket just in case for the future. Radiotherapy is a one shot solution as you cannot have it twice to the same degree.

ill send you a friend request - fore warned is fore armed! There are things for pain that work well but they will not necessarily be offered in a timely manner and I’d like you to prepare. Also some functional deficiencies to manage. Ear ache/pain is marked for a time and entirely normal... it’s worth knowing what not to be frightened by as I thought every unusual sensation was more cancer - a tonsil enlarged by tumour leaves a much bigger wound than routinely and referred pain/ blocked ear/ metallic tastebuds, painful tongue etc are all to be expected.

hopefully you will get in touch.

jane x

Hi Jane

Thanks for your response.

Well, I went in yesterday for the surgery.  I was still in two minds whether I was doing the right thing but I thought that the shot of getting away with radiotherapy was worth it.  I was warned that if the surgeon felt there was any risk of doing unnecessary damage he would abandon the procedure and we would go back to the radiotherapy option

Anyway, to cut a long story short I came round after the GA and the surgery hadn’t gone ahead.  The consultan felt that he couldn’t be sure of not doing any damage to the tongue so decided it was best to leave well alone.  I’m seeing the radiologist on Wednesday to discuss the plan.  6 weeks at 5 days a week.

Although a little disappointed it’s not a major issue as far as I’m concerned. As the consultant said the destination is cure of the cancer, we’re just changing the route.

Take care

Jon