HPV+ Tonsil tumour one side, treatment both

Hi Tony

I had radiotherapy and chemo. Radio was to both sides although tumour was only in the left tonsil and lymph node. Consultant said it was to sterilise the right tonsil to minimise the chance of further problems on that side.

I had a  PEG fitted 10 days before treatment started. I had to start using it in week 3 of treatment because I could swallow nothing due to pain in my throat and mouth. I used it fully for about 8 months. I hated it but I was very glad of it, and no doubt it kept me alive. 

I don't remember being given a choice about the PEG. It was more like it was just an accepted part of the treatment plan. 

Different hospitals have different protocols, but I don't think that means any is superior/inferior.

Just my thoughts.

Hope all goes well for you.

I had my RIG fitted about 10 days before I started treatment. From about week 4 of my treatment I had to use my feeding tube. I haven't used it now for about 4 weeks.

Hi. I’m in week 15 post treatment. Had bilateral tonsillectomy & part of tongue removed in Jan. PEG fitted in Feb then 30 x radio & 6 x chemo (cisplatin). Had radio on both sides even though right tonsil & lymph node were the affected areas. I started using the PEG in week 4 of treatment as I couldn’t swallow. Had it removed 1 month ago. I used it for hydration, meds & overnight liquid feeds. I hated having it but  It was a lifesaver. The hospital trust insist on a PEG before treatment begins. I now can eat various things, dry textures are difficult & I don’t really have much appetite. Am drinking 1 Scandishake a day as a supplement. 

Hello Tony, I am new here too and about to undergo surgery to remove a HPV tumour on my RH tonsil too. I have to have two ops, one to remove a few lymph nodes as it has got into just one of them and then a week later the tumour removal by robot surgery and then like you I will have radiotherapy and no chemo (hopefully, all being well) I am on a trail called PATHOS which is to see if chemo can be avoided and with less RT to lessen the damage, I am not young anymore, 59 yrs old, but I am in every other respect healthy. So we are both on at the beginning of this ... I wish you all the best. I have my pre-op assessments on the 21st. First op on the 26 and then the robot one on the 3rd Aug. It's a funny old life isn't it. But I am pretty stoic about it, I mean I never imagined in a million years I would get cancer, well I never ruled it out but it was still not what I was expecting just yet. Ironically both my and my husband are 'retiring' as we have been running a volunteer ran (so no pay) community centre for the last 20 years hand back the keys this week and start the surgeries the following weeks! I can't say if you should have the radiotherapy on both sides but I'm having it on the affected side. Good luck.

Thanks Nora. Yeah it's pretty rough luck for us both I guess but what can we do other than get on with it I suppose! Your trial sounds interesting, hadn't heard of that one. They did recommend me for the TORPEDO proton beam trial that's happening, but I was quickly rejected because it hasn't spread to my lymph nodes! Taking the tonsils out seems a common theme here but strangely it hasn't been mentioned to me. So I'll be asking about that. Why robot surgery? I know with mine on the actually affected side they said removing the tumour might damage the tongue so wondering if yours is deemed too delicate for human hands too. Good luck for everything. I think the one cause for optimism is that the HPV tumours seem to respond well to treatment, so I'm sure you'll have a long and happy retirement. Take care.

Thanks Blod, hope your recovery continues to go well. 

Thanks Merry-go-round, all the best to you too. 

Hi Tony,  we have a few things in common - I am also 47 (female), also had hpv+ cancer but in my right tonsil. I had one enlarged 'suspicious' node in my neck that wasn't showing as cancerous on any scans (MRI, CT, ultrasound, PET CT) but they were convinced it was microscopic and growing. I opted for surgery first and the pathology showed the neck node was not cancerous. As a result, I have been offered 2 options - 'watch and wait' with no further action unless there is a recurrence, or have radiotherapy to eliminate any microscopic cells that may be lurking around the tumour area after surgery. The oncologist said it would be targeted at the right tonsil only, not the neck and not the left side. So effectively the complete opposite of the advice you have been given. Either my oncologist is very relaxed or yours is super cautious - no idea who is right and I guess we will never know! 

Btw mine was 2.6cm so similar to yours I think (T2N0M0). I was also told I won't have a feeding tube through radiation.

Sarah J said:

Either my oncologist is very relaxed or yours is super cautious - no idea who is right and I guess we will never know! 

It might depend on the pathology. Not all SCCs are the same.