Hi everyone, first post here so apologies if I'm not up to speed with things. For reference I'm a 47 year old man with no other health issues. Had an irritation towards the back of my throat for maybe a year or more. Eventually became concerned enough to visit my GP and was put on the 2 week pathway before ultimately being diagnosed with an HPV 16+ Tonsil cancer on my left side almost 4 weeks ago now. Was initially told with complete confidence by ENT that it was merely a cyst and could be removed if I wished! Fortunately I did wish because when it came to the day of the surgery the surgeon saw it was more than just a cyst and so it's removal turned into a biopsy that then led, a full month later, to them telling me that it was actually cancer. The good news is that, apart from being HPV+ and the greater chances of success that I understand this brings, it hasn't spread anywhere else. CT and PET scan all clear so no sign of any spread thus far. Despite this the oncologist is recommending that I have radiotherapy on both sides of my neck. 100% strength on the left side and 80% (!!) strength on the right side. As discussed with her I understand that this is essentially an insurance policy against a migration of the cancer to my right side, but she admits this is by no means something to be expected. My main concern with this is the side effects that I really hope to find more out about here. In particular the long term ones. I'm not a young man, but nor do I feel I'm otherwise coming to the end, so quality of life is perhaps more important to me than substandard continuation of life. So has anyone here experienced this? My treatment will be just radiotherapy (was a brief moment when I was put forward for the proton beam trial at UCL, but I'm apparently not sick enough for that!) with no chemo mercifully. But I'm trying to decide whether I want to accept radiotherapy on both sides (with all the extra damage this means, and despite the fact that there is no sign of it being needed) or insist that they only do it on the left hand side. Thanks for reading and any words or considered advice will be appreciated. May luck be with us all.
Hi Tony and welcome to the community
I am a three and a half year survivor of cancer too the base of my tongue where there are extra tonsils. HPV + too
I had radiation to both side with a reduced dose to the contralateral side. I can tell you that although my mouth is a little dry, it's manageable and doesn't inconvenience me at all any more.
Have a word with your oncologist. If you are having RT to both sides I'm sure they will spare the parotid salivary gland on the unaffected side, which is what makes the difference. I was told the extra RT was to take care of lymph nodes on the other side rather than a spread of the cancer locally.
Side effects are varied and multi and the team will take you through them with your consent form. They include loss of taste, ulceration of the mouth lining (mucositis) to the extent that a lot of people can't eat and are tube fed...but by no means all, inability to swallow, pain, a badly "sunburnt" neck, fatigue.There is short period of a few weeks where saliva is replaced by thick stringy mucous which is unpleasant.
All there are manageable.
It's not easy but doable and most of us recover well
Long term saliva loss and consequent caries. Trismus (which is fibrosis of the jaw muscles so that you can't open your mouth)
NOBODY gets them all and plenty of people sail through fairly uneventfully
Have a look atMark's profile MarkEL which you can see if you click on his name here. It's very useful.
What stage are you? By that I mean the size of the cancer.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Tony. Other side got 70%. The parotid was spared. Yes I did have a feeding tube but then I’m older than you which I’m sure has a bearing. If you click on my blog linked at the bottom of the post there’s a resumé.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Did you also just have evidence of cancer on just the one side so the contralateral was precautionary?
No evidence. My tumour was 25mm with no nodal spread and no mets.
My NG tube was put in during week four and I had it in place for 8 weeks.
Did you have a tonsillectomy? Sometimes they take both tonsils out and check them for cancer cells.
I have read that some people here got RT only on one side. I'll see if I can find the posts
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Tony. the hospital I was at was Singleton in Swansea. They didn't let you have PEG proactively but a Nasogastric Gastric tube reactively....when you needed it. It's not a request really. You are seeing the radiographers daily and if they see you struggling they will get you in to have one placed. It didn't hurt and I was glad to get it. It went in because I couldn't swallow anything.
Some like the Royal Marsden flatly refuse insisting that you keep swallowing, seemingly not bothering with how much weight you lose.
One the tube was in all my food and meds went that way. I fed overnight by pump which left me free during the day to play with what I could swallow and not worry about having enough calories
It's something you can talk to your dietician about
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Thanks Lee. Yeah I can see those cravings very clearly in my future! 
I'm being spared the chemo but they do want to give me radio on both sides as a precaution, no sign of cancer on the right hand side, but 100% on the affected side and 80% on the 'maybe' side! Am asking everyone who replies the same thing, when did you have your PEG, or otherwise, feeding tube fitted and did you have to use it much?
