Post Radiotherapy Swollen Tongue

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Hello there,

My partner is now 3 weeks post radiotherapy for tonsil, tongue cancer.  His tongue is still swollen particularly on one side (cancer side). Has anyone else had a similar swelling and if so, how long did it take for the swelling to subside. He's slowly trying soft food, very small amounts a couple of times a day and is still using his RIG for overnight feeds. It's not affecting his swallowing,  although still sore at times to swallow and has ulcers still. 

  • Hi

    I had ulcers, a raw throat and sore tongue for months after treatment, things did slowly improve, Difflam spray helped, use of plenty of hydration, Biotene gel helped with the tongue problem, contact oncology teams for help/reassurance?

    Peter

  • Hi Peter,

    Thank you for your prompt response.  We are seeing the oncologist on Wednesday so we can ask then. We are guessing it's still part of the general inflammation after 6 weeks of gruelling radiotherapy in that area, but always nice to get reassurance that it's perfectly normal. 

  • Agree with Peter. 
    mY ulcers persisted for months but stopped hurting that much by 12 weeks. 

    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 another place you will find support is The Swallows Head and Neck Support Group sorry I normally include the link but I’m on my iPad so if you search them then go to the website 

    They have all sorts of helpful resources and also free samples of soothing treatments 

    Take care 

    Tony

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    We will move mountains to help people with cancer live life as fully as they can.
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    call 0808 808 00 00 or visit www.macmillan.org.uk

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  • a little over 6 months after treatment I had an ultrasound scan for my thyroid and they commented that they could see that my neck/throat was still healing.. so, its going to take a good while for everything to settle down.. I also had swelling more on the treatment side.. its not something you can rush but everyday is a step forward.

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • Thank you Tony,  I'll take a look at their website. 

  • Hi, I’m still having the same problem as your partner with a swollen tongue after 9 weeks post RT. It’s so frustrating and all I can eat is soup, custard, peaches, dipped biscuits or ice cream. I do try my husband’s dinners but they are still too painful on my tongue. 

    Sue

  • Hi I had ulcers for around 13 weeks full side of tongue  around 4 weeks I could manage soft foods. Felicia’s to numb if helped. Later on I did get but I g to give then I had to do a food diary to find my triggers which were fermented foods cheese yoghurts and many acidic care all different but you’ll get there.hugs lots of water as well 
    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Sue, I'm sorry to hear that you're still having a hard time with your tongue like my partner.  He's like you only managing to eat, custard, rhubarb yoghurt, ready brek and ice cream. He's not eating large amounts just a couple of spoonfuls.  It is very frustrating for him as it must be for you. He used to love his food but has no appetite at all. Has you swollen tongue affected your speech? My partners speech has not improved as he is still lisping/slurring because of the excess mucus and swollen tongue. I guess as everyone says, it's small steps at a time. Sending you best wishes for your continuing recovery. 

  • Exactly as your partner I suffered the worst sticky mucus week 2 and 3 post RT but that luckily has subsided now. I’m also struggling with speech due to a dry mouth so I constantly drink water and Oralieve gel and spray on prescription I also use Oralieve toothpaste and normal toothpaste is too painful. Since I needed 3 back teeth out I don’t think eating meat will be very easy once I can eat. A definite no no is garlic which was my favourite taste and now it stings my tongue. This is really a long haul that I’m so not enjoying. Best wishes to you both as I know it affects both of you, like us. Sue x