New here - trying to find out reality of radiation side effects

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Hello,

Diagnosed with tonsil cancer 2 months ago. Was supposed to start radiotherapy a few weeks ago (VMAT) but postponed it after reading about how bad the side effects can be. I'm terrified at the thought of not being able to swallow, especially if this becomes permanent. Also worried about dry mouth, burning mouth, losing teeth, etc.

But I gather it is not like that for everyone. And that radiotherapy has improved, become more accurate. Can anyone put my mind at rest (a little?) Are the side effects really that bad?  I can put up with the short term pain and discomfort, but the idea of a permanent feeding tube is stopping me having the radiotherapy.

Has anyone had a good experience of radiotherapy to head-neck, with few side effects?

Thank you!

  • Has anyone had a good experience of radiotherapy to head-neck, with few side effects?

    Yes most of us. I am five years plus clear and the only thing I can report is a reduction in my saliva and some slight fibrosis in my neck 

    Have a look by at the last entry in my blog linked at the bottom of this post. 
    The treatment is pretty nasty but it doesn’t last forever and I was pretty ok all round at six months. 
    Please reconsider. Tonsil cancer will kill you in a really gruesome way if you don’t jump at the chance of a cure. 
    Cure rates are in excess of 90% especially if the cancer is HPV positive which most are. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi! Really sorry you find yourself here but like others, l have found responses from people on here both reassuring and calming. My story- l was diagnosed with tonsillar cancer this time last year and began chemoradiation at the beginning of July, having had my right tonsil removed, a couple of months prior. Firstly, we are all different. My cancer was T3 ( quite big) but had not spread to lymph nodes or elsewhere. It was HPV + ( which means it should respond well to radio/chemo). It did, btw. I did not have a feeding tube or PEG. I had 6 weeks of radio & five days of chemo. Yes, l did suffer loss of taste, tiredness and towards the end, extreme pain & difficulty swallowing. However, l got through it by doing as l was told ( swallowing exercises, pain management & listening to what my body told me- resting as necessary). I did not lose any teeth & carried on using an electric toothbrush throughout- with a soft brush. In the last week of radio & first 2 weeks afterwards, l needed morphine & protein drinks to keep up my food intake. I am a ‘scaredy-cat’, but l got through it - you can too, like the rest of us on here. You might need more help than l did, but so what. It’s not a competition & if you need a PEG & are offered one - take it. I would have… l am 9 months since the last radio & got the verdict ‘complete response’ just before Xmas. By then, l was eating normally, but l do still have a dry mouth which is slowly improving. I chew sugarfree gum for that ( v ironic since l spent most of my adult  life teaching - asking adolescents to remove theirs … 

    l wish you all the luck & sincerely hope this may have helped allay some of your fears… x

    l

  • Thank you! that's good to hear. You've definitely allayed some fears, and I'm glad you're doing so well.

  • I am half way through and yes it gets tough, I can still swallow but my main problem is the feeling sickness ever with the tablets.

     Have a Peg fitted and will try my best not to use it if possible.

    The staff are brilliant and will help you all the way. Today w discovered I have thrush of my tongue but apparently is normal.

     I would listen to the great people here as we are all going through this battle

    DaveB 

  • Hi Greenwood

    T2N1M0 HPV16+ tonsil cancer....Chemoradio finished June 2023

    No point in trying to dress up the treatment as anything else but extremely challenging....tho some do get off relatively lightly.

    After week 3 of treatment swallowing became almost impossible....totally reliant on my PEG feeding tube for survival....still ended up in hospital after rapid weight loss....16 kgs in 2-3 weeks....for me no treatment was not really an option...lots of low points and few good days for some months then things started to improve.

    PEG feeding tube now removed, healthy BMI, been eating well, appetite improving.....been to Canaries a couple of times...Travel insurance has quadrupled.

    A very tough gig for most.

    Take care and best of luck

    Peter

  • Thanks Dani - your blog is really helpful, especially the description of your RT treatment. Sounds tough. But very helpful to know your situation 5 years on. It's the long term and late effects that worry me most.

    You're right, it's important to survive. I am reconsidering...

  • Wow. That does sound tough. Thanks for the honest picture. 

    Glad things improved, and improving. Shame about the travel insurance!

  • Ok, half way through is about where I should have been by now. 

    Not too long to the end of treatment for you and coming out the other side. It's so helpful to hear all these different accounts, during and post-treatment.

    Thanks for your reply and all the best.

  • Hi Dave

    Thrush is one of the challenges we face....nasty....had 3 episodes of  oral thrush ...Nystatin sorted it each time....

    Peter

  • Can I just stress that it doesn’t last forever. You’ve said you can put up with the pain 

    I can put up with the short term pain and discomfort,

    The treatment IS a real challenge and there is no dressing it up but believe me you get masses of help and completely wrap around care so don’t be put off by people tales of woe here. We are all different but we all cope survive and thrive 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge