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!

  • I am now 3 1/2 months post my latest treatment - chemoradiation.  I still have my feeding tube in but only until I have a clear PET scan and know I won't need it again.  A very few people don't regain the ability to eat, but it is a tiny percentage.  My taste has returned, although somewhat muted.  I do have a dry mouth but there are techniques that work for me that enable me to sleep and eat reasonably well.  I did not lose any teeth and other side effects, although significant, were transient and manageable with diligent use of pain relief and the lotions/potions and exercises you are advised to use and do.

    Not everybody gets the same or all of the listed side effects.  For example one chap I went through treatment with had significant nausea but no ulceration to the mouth and throat.  I was the exact opposite.  Unfortunately you don't know until you get there. 

    My clinical team will tell me that I have got through this easier than many have.  Despite that reassurance the treatment in brutal and the recovery torture.  However, the vast majority of us do go on to live happy and fulfilled lives.  It is worth it.  The alternative is the certainty that the cancer will destroy you.

    With the support of this forum you have a much better chance of managing the process to minimise the effect on you.  We all wear the T-shirt in one form or another and will be watching your back as you go through treatment and into recovery.

    Peter
    See my profile for more details of my convoluted journey
  • Hi I’m almostb6 years post radiotherapy for tonsil,cancer 35 radiotherapy and 2 chemo I was ng tube fed for 6 weeks in total 3 weeks during 3 weeks after. I’m eating almost as well as I did before. Onky spicy is out for me Treatments hard but i was  61 and i did  it. It’s certainly better than the alternative. As long as you do as your teams  tell you take medication when you need it and take time to recover you’ll get there. It’s extremely rare that anyone end us unable to eat again.Plenty of  us in here living a good life and yes targeting is improving all the time. Read my blog below it may help there’s other links on it as well 

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Greenwood Tree

    Im sorry to hear about your recent diagnosis, Im glad you have found your way onto this wonderful supportive group.

    We have all been there terrified by the fear of the unknown with anxieties hitting the roof… I was one of the few people who have a very very difficult time but with a T4 HPV Tonsil cancer which had spread to base of tongue( plus activity in left tonsil) and in several lymph nodes my Oncologist+Team had to blast it with everything they had,

    Im now nearly 6mths post treatment and no matter how horrific my experience was I would do it all again if I had to because it has saved my life !

    Ive just been told the treatment has worked (90% cure rate for HPV related H&N cancersI still have my PEG which I use daily its become second nature now , (lots of other issues )but embracing each and every day just experienced my first holiday abroad ,driving again and can eat a small trifle each day.

    I hope after reading the posts and blogs from the lovely  people on this site it will help you to choose what you feel is the best treatment plan .

    Sending you strength resilience and a big hug!

    Debbie

  • Thanks so much Debbie for taking the time to reply. This forum has helped shift my perspective, and it's encouraging to hear how you have coped with difficult symptoms in such a positive way.

    (I've decided to go ahead with the radiotherapy!)

  • You're right, the alternative is not a good prospect - the certainty that in time, the cancer would spread if not treated. This is exactly what my oncologist said, even though my cancer was caught early.

    It's good to hear most people go on to live happy lives post-treatment. It's so easy to get hyper-focussed on adverse risks and lose sight of the bigger picture (life!)

  • Hi glad you’ve made the right decision as then alternative is a one way street. There was no bigger wimp than me. If I broke a nail I cried but I put my big girl knickers on and I did it so can you. 

    hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • I've decided to go ahead with the radiotherapy

    Good....stay with us. We will help you through. Don't hesitate to ask anything you want. No question is daft and somebody will have an answer. When you go back to hospital....tell your oncologist about this forum and how we have shifted your perspective. Macmillan needs al the help we can get too.

    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
  • Hi, I have finished treatment 3 weeks ago, my advice is to take the treatment. My side effects are reducing constantly now. I'm about to eat some soup. If you want to know anything, just ask. 

  • Hi, I finished my treatment just over three weeks ago. The treatment was challenging, with support of family and friends I got through it. To be honest, the worst part was the travelling 5 days a week to Leeds. I had 2 chemo, 35 radio. 

    Now, I'm  no longer taking any medication related to the cancer or treatment. I'm drinking water. I'm eating soup with diced veg. I've been told I can start eating things like weetabix etc. The only real issue I have is the lack.of taste, I've been told that will be a waiting game for now. I have a PEG and use it, it got me through the treatment and recovery, and still is needed to make sure I'm getting enough inside me. The PEG started out as my foe, is now my friend. That said, I'm looking forward to when it can be removed.

    For what it's worth, I'd strongly advise getting the treatment, I'm a wuss and came through ir, I'm sure that you will be able to get through it. We all deserve to live our best life. 

  • Well done  on getting through and doing so well and thanks for adding fuel to our firefighting 

    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