Tonsil cancer - Proton Beam Therapy

Hi Lisa and welcome to the community. So sorry you've had to find us but we are a friendly bunch full of tips advice and support.

I had standard VMAT IMRT as Proton Beam Therapy, though in use for prostate and brain tumours is in its infancy for Head and Neck cancer so I can't help directly.

PBTis still radiotherapy, just delivered in a different way using different ionising radiation. It's more finely targeted so should produce fewer side effects. I think treatment times are longer, most of us being on and off the table in ten minutes, but I might be wrong. It is as effective in treating disease as the usual RT.

The side effects would be similar to standard treatment but possibly less intense.

The usual stuff is oral and oropharyngeal ulceration, loss of saliva and skin damage to the neck and that is glossing over it. RT carries on working for a few weeks after you finish treatment but most people are feeling more themselves at six weeks and turn a corner at 12.

I have a blog, linked at the bottom of this post which might be helpful when you are ready.

All of us are different in the way we respond and you can suffer from information overload if you try to digest it all at once so it might be easier to ask questions as side effects manifest themselves

You can send any of us private messages if you feel you need any extra help and advice. Just send a friend request by clicking on our names and take it from there

Please keep in touch as we would all be interested in how you find it.

PA. Where are you being treated?

Hi lisa

welcome to our small community .I am almost 30 month post radiotherapy for tonsil cancer with several affected lymph nodes it’s easy also on my soft palate and  anterior wall of tonsil.I. am living my life to the full treatment I’d doable I am a wimp I did it. I was T2N2NM so similar to you. I can’t add anything to what Dani has put. My details are below if I can help just ask. 
PTB is the future presumably you are near London or Manchester for the n h s machines. I can’t advise you either way sorry but if I had been offered it I know what I would have said. 
Good luck in your treatment 

Hazel xx

Hi, thanks so much for replying. It's so lovely to know there are people who have been or are going through the same thing. 

Im very lucky as i live a 20 minute drive from Christies in Manchester.

From what has been mentioned, i will be on the table for approximately 45 minutes, but will know better when treatment starts on Monday. Actually the time on the table is something ive been thinking about, especially with radiation burn and the mask, but also trying not to overthink as the treatment is happening no matter what.

Im a great believer in positive thinking (and pain relief lol).

Xxxx

Hi Lisa. Great thing positive thinking. You won’t get worse burns because you don’t get more radiation. Proton is just different to deliver. Keep your chin up.

Hi lisa

like Dani says you won’t get worse  radiation burns with proton beam. Top top for lying on table I used to take my head in a planned walk or bike ride. I included coffee stops loo breaks mentally in my head. I too am a big positive mental attitude and pain relief to kill the pain. It worked for me. 
look forward to your updates. 
Hazel x

Hi Lisa

Wow.  I'd have jumped at the chance to have Proton Beam.  Like the rest of us, I'll be really interested to read any updates.

Many hospitals have music playing while you undergo the radiotherapy or allow you to take in your own music.  I found it really helpful.  Do you know whether that's an option for you?

Linda x

LindaWT said:

Wow.  I'd have jumped at the chance to have Proton Beam. 

Yep. Same here. I’d have rented near Christie’s too or London come to think of that. Of course there is Rutherford but only if you have insurance which I ditched a year before all this happened. 

I was surprised when they mentioned proton too. They are trialing it to see if it causes less long term side effects with these types of cancers. Its a randomised trial, so even when i agreed (jumped at the chance) there was no guarantee i would be picked, so i am very happy that i have got on the trial.

I will keep you all posted. From speaking to the consultant, dieticians etc the immediate side effects seem to be the same as you would get with radiotherapy, but I will let you all know.

Yes, they will let you have your own music request on when having treatment. Ive had lots of ct and mri scans and have found i too like to visualise myself somewhere nice... A beach always seems to crop up somewhere along the route funnily enough (think that's wishful thinking lol)  

Thank you all again for replying.  It really does mean such a lot to hear your experiences and tips. 

Lisa xxx

Hi Lisa a beach will happen I flew to our apartment 8 weeks  after treatment mad or sane who  knows but it did me good. 5 month after we drove down for 10 weeks and  as long as I used factor 50 I was fine on the beach and in the sea. Yes I also took my own play lists in. As you could host her from my earlier posts I too would’ve jumped at proton beam therapy. Go for it snd we all await with baited breath 

good luck Hazel 

Oh Wow!!! That's fantastic. I'm sure it was just what you needed. Also great to hear you were ok on the beach and in the sea.

I bought a small case for my overnight stay yesterday. I might pop a sunlotion in and pretend I'm actually going away.. It may enhance the visualisation technique lol.

Lisa xxx