Neck & Throat Radiotherapy Side Effects?

  • 7 replies
  • 13 subscribers
  • 1430 views

Hello,

I'm new here. Recently I've been diagnosed with secondary lymph cancer in the neck. They cannot find the primary (had tonsils removed). Therefore in a few weeks I'm about to start Radiotherapy & Chemo. The more I read, the more I'm becoming increasingly concerned about the short term and long term side effects of the radiotherapy. Especially as in my case, they're zapping quite a large area in order to hopefully cover off where the primary cancer may be lurking. So this will include my throat , which I understand will cause dental / mouth issues, burns / ulcers and result in difficulty swallowing. Therefore I need to have a feeding tube fitted in my tummy, and will have gels for the mouth. 

Has anyone else been through a similar thing, I'd be interested to hear about how severe the side effects are, the impact day to day, and how long they last?

Hopefully this is the right group, please advise if there is a group for throat/neck cancer.

Thanks

Mark

  •  

    Hi Mark and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    It's natural to worry about possible side effects and talking to others who have had this for a similar cancer is a good idea.

    There is a support group for head and neck cancer which would be a great place to ask your questions, share experiences and get support. To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here, and join in with existing conversations by clicking on reply.

    It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi Mark

    I had throat cancer and received 37 does of radiotherapy to my neck, this resulted in me net being able to swallow ( not had anything by mouth food or li quad since Dec 2020 ) I have a feeding tube which I have to put liquid feed and water in, I have what they call a button tube in which is far better than the ordinary tube as no one can tell you have a tube in, you will soon get used to the tube , they said it’s very rare that you won’t be able to swallow again so hopefully you will be able to swallow, good luck

  • Hi mark just been through the radiotherapy finished 26th sept I’m having the side effects now, was ok going through it, I have sore skin I havespecial dressings on, my mouth as ulcers which I wash out and put gel onthree times a day, I had my feeding tube put inefore my three ops last may, I had jaw cancerso they took my bone and replaced by part of my fibula. I’m doing ok so far, it’s very daunting waiting and you’ll get through ok, just be aware there will be rough days but it soon passes, I’m waiting for my good days to start, I have had difficulty swallowing all along sinveop but I’m ok after radiotherapy andfeel like I’m swallowing razor blades at times,  but I do exercises for it, anyway I’m still using my feeding tube to keep myself fed, it just takes time x good luck x 

  • Hi Mark .01

    Im three weeks in to radiotherapy /chemo for T4a3N MO +16

    Sadly due to bone density I had 8 teeth removed 5 weeks ago and feeding peg fitted 3 weeks ago.14/35 radio and 1/3 chemo.

    Side effects just started last two nights two cracking ulcers in mouth but gelclair really helps , reflux when feeding ( lucky if I get 500mls via sipping was eating soup to yesterday but think it was last meal as brought it all up at 12-2am (been sick and nausea since Chemo Been given Antacid oral suspension to help pain in throat and reflux.Peg feeding easy once you get hang of it and I now see its my lifeline.

    Everyones journey is different what happens along the road can be challanging but you can do it ….. look at all the amazing individuals on here who are now in recovery or cancer free !

    Good luck mate tell your radiotherapy team of any side effects especialy pain (important to get this under control or worries and take one day at a time tick it off a calendar.

    DebbieFingers crossed 

  • Hi Mark.

    So many similarities including our name.  A lymph node in my neck became swollen/ enlarged. The surgeon removed all 4 nodes in that chain however the histology indicated only the top most node to be diseased. The cancer cells being defined as secondary. I then had a tonsillectomy and tongue biopsies, all of which were found to be negative. The recommended further treatment was for chemotherapy and radiotherapy in an effort to find and kill the primary. My chemotherapy was stopped early because of the harm to my kidneys. The radiotherapy was programmed for 33 sessions but after 28 I called it a day because I was so ill. The radiotherapy was volume based and caused severe problems with mouth ulcers, being unable to swallow etc. The last radiotherapy session was on 8 December and has left me with an inability to produce saliva and damage to the taste buds. After 4 weeks I am now able to eat solids but experience problems with no saliva, taste and irritation of the tissues internal to my mouth.  I was hoping that you or anyone else who has had similar problems can talk about their prognosis.  Cheers Mark Firkins.

  • Hi mark I had cancer in my jaw had bone from leg taken and used as jaw bone after my cancer was taken away with jaw bone attached, I’ve had a peg in my tummy since last may, I have fortisip delivered to me and I use that in my tube to live basically although I can eat soups deserts etc but not big bits in it, I’ve had six weeks of radiotherapy  I did ok few side effects but that was finished last sep and I’m doing ok, got two more ops to go through for reconstructive dentistry etc but it went very quickly and you would be amazed how you deal with it all, be strong you’ll be fine and things just fall in tomplacecas you go along, I had ulcers but they soon went in couple weeks, it differs between different people so we all have different reactions

    sending you good luck on your future journey x  

  • Hi Mark,

    Good to hear from you. I did an update about 6 weeks after treatment finished here

     Dry mouth & Bad Tinnitus 

    At 6 weeks post treatment, we went out for a pub lunch, and I had sausage and mash with lots of gravy. I only managed one sausage, but it felt great!

    I'm about 6 months post treatment now. Most food and drink tastes good, but not quite as good as it used to be, but I can enjoy lots of food. I used to like fruit tea, and that's not appealing, but I keep trying. There have been great improvements for me over the last 6 months. Saliva is still dry at night, I waking up every hour. When eating I have to go for something with gravy or sauce, sandwich & cup a soup , but I can eat most things day to day, can't complain. I think its very gradually improving. I eat out quite a bit, and that's always a challenge finding something sloppy enough!

    The hospital said it may improve for up to 18 months, so I'm happy with that. I still have tinnitus , try to ignore it. I've developed the turkey chin, lymphedema, so I'm doing some massages for that. I've been back to work a few months, and I'm back exercising. Pretty much business as usual... the new usual. Oh I had an MRI and the all clear in October!