HPV Tonsil Cancer, new treatment trial.


New to the group so not quite sure of the protocol etc but here goes. 

Story so far, after 6 months of GP and hospital visits both tonsils were removed 3 weeks ago 

( and believe me that was no walk in the park),

2 weeks ago had confirmation that there was Cancer contained in the right tonsil. 

Back to hospital yesterday and told that it is HPV  type cancer? 

The cancer was contained in the tonsil and 1 lymph node only (but final confirmation after process as stated below) Consultant said it did not appear to have spread anywhere else in my body. 

I was then told about the traditional approach to treatment 6 weeks radiology combined with 2 chemotherapy treatments, then came the new stuff.

There is a thought that the current treatment is more aggressive than needed for HPV cancer it was more suited to smoking related cancers and there is hope by changing it the side effects etc will be improved,

It's a fairly new trial where the following happens,

1. More surgery to remove cancer lymph node and also others along side, also removal of tissue from around right tonsil area to gain a clear margin. Nodes and tissue then checked if clear no further treatment. Usually about 1/10 people.

If not then onto next stage, you do not choose your path it is done by computer at random

2. 4/10 people onto traditional treatment program. 

3. 5/10 people onto new option split into 2 further groups of receiving 5 weeks of radiology at low dose or 6 weeks at standard dose. 

The paperwork given to me is good and informative and the follow up monitoring is very good,

Has anyone else out there been offered/involved this trial? 

Pretty sure I'm going to offer to be a guinea pig for them as I like the thought of helping others in the future.

And of course needless to say I am hoping for a good outcome for myself. 

  • Hello again I Love Red Wine.

    I meant to say before that I like your user name, used to be my favourite drink.  Sorry to hear about the speech problem.  It doesn't sound quite the same as what I had for a week or so after my operation.  My speech would get slurred, I was told it sounded like I'd had one drink too many, chance would be a fine thing whilst stuck in a hospital bed!  In my case they said it was a weakness of the tongue muscles caused by the trauma of the operation.  They sent me a Speech & Language Therapist who gave me some exercises which helped, so if you haven't already seen one of these I would recommend you ask if you can see one as they may be able to help. 

    No you're not moaning.  This is a tough thing we have to go through and I remember I often would feel sorry for myself.  Friends would try to find little things to send to help cheer me up.  Don't know what you're into but I always found a video clip of a baby panda to be very therapeutic. 

    Hang on in there, things will get better.  xx

    "Life might not be the party we were expecting but while we are here we should dance."

  • 4 weeks down the line and I am back on Wednesday to find out what happens next. Every one keeps say I will be one of the lucky ones who doesn't need any further treatment but I don't think so. I'm expecting at least radio therapy has any one else been at T2N1 and not needed furthe treatment? Also I still have no feeling in right side of my tongue is this still normal for 4 weeks post surgery? 

  • If you're T2N1, then you will need radiotherapy, as that indicates it has spread to the lymph nodes (the N1 tells you that). Also if your cancer presented itself as a lump in your neck then it would suggest you had localised spread, which needs further treatment after surgery. The question is whether you will have 5 weeks radiotherapy or 6 weeks and/or chemotherapy. This should have been explained to you prior to you're treatment. I'm sorry to say half my tongue has remained mostly numb since my operation, which was over 8 months ago. I'd be interested to know which hospital you are being treated at, as I was on the PATHOS too. 

  • Hi Tricky, 

    I'm being treated at Castle Hill in Yorkshire. 

    Should have got results and next stage last week but doc was on holiday. I am expecting to need some further treatment but they did say if it hadn't broken out of the lymph then I might not need it. ( think I'm just clutching at straws really) think it's because I've had a tough few weeks I need some good news. How did you cope with the treatment did you need a feeding tube/ peg? I'm not sure what my hospitals policy is on this. Any info or tips would be appreciated, thank you. 

  • FormerMember
    FormerMember in reply to I love red wine

    Hi Tricky, 

    I'm also being treated at castle hill , i finished my chemoradiation for tongue cancer which had spread to the lymph nodes March 22nd.

    I can sympathize with the numb tongue after neck dissection , although mine only lasted a couple of weeks,  i did have marks on my tongue for longer where it had been clamped though.

    I had a feeding tube(rig) fitted after neck surgery and before treatment , which i came to rely on 1 week before the end of treatment , I continued to try and eat small amounts but this soon turned into sips of water. I had the tube removed last month as it was really getting me down, i was placed on high calorie shakes by the dietitian, as well as eating soft foods such as rice pudding and weetabix.

    Good Luck Tricky


  • FormerMember
    FormerMember in reply to I love red wine

    Sorry last post was for 'I love red wine ' DUH !!

  • I think if it's broken out of the lymph nodes (extra capsular spread) then that means you would normally need chemotherapy too. However because you're on the trial you might get selected for the group that will not need chemo. If you don't have extra capsular spread (and a few other risk factors) then you will just have radiotherapy - either five weeks or six, depending on which group you get chosen for. Basically the trial is trying to ascertain if traditional risk factors for smoking related throat cancers are also risk factors for hpv cancers (which are entirely different). There is already a lot of evidence to suggest they are not, and that the current treatment guidelines mean hpv cancers are being over treated. I unfortunately had the full whack of six weeks and chemo. I didn't need a feeding tube, so maybe you won't either. My swallowing is almost back to normal now six months after treatment. However the surgery has caused ongoing problems, but I had complications during my surgery. 

  • No problem LOL

    I will update on Wednesday when I find out my fate. I had tube in for 2 days after dissection and hated it so goodness know what I will be like if it's in for weeks. 

  • Great News,

    Consultant told me that I don't need any further treatment, it was all contained in the tonsil and there had been no extra capsular spread from the lymph node into any other nodes or anywhere else. So I feel at least all the problems and discomfort from the extra op has been worth it, got to have another scan in 6 weeks and regular check ups but can now hopefully look forward to a positive future. So right now I am going to go with my name and have a nice glass of red Wine. Wishing good luck and positive vibes to everyone in our group and I will definitely be still a contributing member. As I know I'm not out of the woods yet and 5 years is a long time. 

  • Just wanted to say thank you Tricky, your info helped me greatly to ask the right questions when we saw the specialist.