Hi Samster

I am sorry to hear of your diagnosis but glad that my blog has helped put some perspective on what potentially lies ahead.

So a couple things. The first one being that always keep in the back of your mind that treatment is hugely successful in this area and statitically very high for cure.
I was told by my consultant from the get go that treatment and recovery would be a challenge but would be aiming for complete cure and from that day I kept a positive head which helped me no end through treatment.
On the dental issue , I had to have all back teeth removed before treatment and this was because of the potential damage radiotherpay could have with teeth and cause additional complications down line. Dental consultant worked through with ENT consultant plan and told me I had to have removed and no option given. I think it has something to do with teeth potentially crumbling from radiotherapy and more difficult to deal with.
The treatment nowadays is very scientific and will be tailored plan by your consultant.
Radiotherapy in itself is painless and takes around 10/15 mins or so each day in treatment room and away you go again. The challanges are the side effects that normally start kicking in around week 3 of treatment and recovery period is the most challenging part rather than the treatmemt period.

I was not given option for feeding tube either and there are pros and cons for. I was personally glad i didnt even though I struggled with food intake for a while during recovery.

Cant comment on going private with proton other than in my experience my care and treatment with NHS was absolulely first class and the whole support team was magnificent and I have nothing but priase for them. 

Totally understand you will be anxious about the whole journey and I wish you well and more than happy to help in any way I can or answer any further questions.
One of my favorite sayings was that there is light at the end of the tunnel and you will see so many success stories on here for this type of treatment so as much as its challenging please try to stay as positive as possible and remember there will be a light at the end of your tunnel.

I have posted my blog link for ease of reference

radiotherapythroat.home.blog

kind regards
Ian (aka Anchor 1707)

Hi my cyst on vocal chord showed up straight away on my camera scope. Hard tissue could well be fibrosis residue from treatament. My consultants are very open and I would like to think k if hey had any doubts they would tell me what they were  looking at. My issue with dental referral the ent consultant in max fax looked at my gum ok it was ok  2 weeks later and nothing was there but dentist had taken photos of it and he had them in computer. In his words dentist did right thing by sending me ti be checked  iver as from the photo it coukd have been the start if a new growth. Thankfully it wasn't it was literally food trauma .4 years ago I like your m am had no issues apart from Larry the lump so know where you are coming from. I do hope you get a speedy response 

Hazel sorry for late reply we're in Spain and I was our on my bike. 
 

Hi I'm Hazel aka RadioactiveRaz just want to add I had chemo cisplatin it does nit damage your voice or it didn't mine or anyone  else I know As for proton beam I would be wary as at the moment there's unsure about it being used as main line defence in head and neck cancers. I personally know 2 who have been part of a trial and both people have suffered more intense burning that i or any iothers I know Proton beam is certainty the way forward in cancer if head and neck reoccurrence s but at the moment the good standard is  chemo radiotherapy. Even though Parton beam is highly targeted uts very very intense and the delicate mucosal linings can take a beating.
 I had 35 radiotherapy and 2 out of a planned 3 chemo. If yiu wanted ti send me a private message I could direct you to one person who has had proton  beam and her experience. As for feeding tube I could no longer swallow at week 3 I had n g tube  fitted then for 6 weeks it was my life saver. You can't imagine how hard it is nit being able  to swallow as much as a teaspoon of water so bear in mind you may need a tube later. Hopefully you won't but none if us know how we will react so keep an open mind. 
Hazel 

I really need to Che k the dates of these posts

Hi all,

Entering week 4 post radiotherapy for base of tongue cancer. Have PEG fitted but so far haven't had recourse to use it. Managing to swallow ok now for the most part. Mouth very dry at times especially middle of the night. 

As far as meds are concerned for throat pain relief  I'm still taking soluble paracetamol( 2 x 500 mg tables ) 4 times a day, Liquid codeine ( 20 ml ) 4 times a day, together with oxcetaine( 10 ml) .Also Difflam  mouthwash 4 times a day and Caphosol dissolvable tablets ( 1 tablet in water 6/8 a day).

My question is, how long should I be taking this amount of medication for ?

Thanks Hazel. I shall start reducing codeine first .followed by paracetamol. Was told when Campbell runs out to revert to plain salt and water mouthwash.

Liam

Hi Yes that's the way to go I reduced gradukaayntbatbway yiu avoid opiate withdrawal. As for the caphosol my hospital,didn't prescribe it all I used was a salt water and baking powder solution. 
pone litre water one teaspoon salt and 1/2 baking powder mix it up and store in a bottle.

Best wishes Hazel xx

How long should I continue taking Difflam mouthwash for, post radiotherapy.?

Hi I didn't use that I only had saltwater rinses. All I can say once you've stopped the opiates see how your throat pain is .youmatnotneed it. Change to gentle mouthwash I use bioxtra on prescription. 
Best wishes Hazel x