19 yr old son just diagnosed with tongue cancer

  • 11 replies
  • 47 subscribers
  • 369 views

Hello. I’m new here!

My son was diagnosed this week after a CT scan, biopsy and MRI scan. He is booked in for 8-9 hour surgery in 2 weeks to remove half of his tongue and the lymph nodes on both sides of his neck, and reconstruct his tongue with a skin graft. We are waiting for a PET scan. They have said a minimum of 2 days in ICU, tracheostomy tube in place for at least a week, in hospital for 2-3 weeks. The consultants are pretty baffled because of his age. 


His greatest concern, apart from the actual surgery, is how it is going to affect his swallowing and speech. My greatest concerns are whether they can get rid of it, and if it will come back. 

It is breaking my heart that my son is having to deal with this at such a young age. He might be 19, but that is barely out of childhood.

Any words of wisdom welcome! Is there anyone who has had a Hemiglossectomy on here? 

  • So sorry to hear this news which must be devasting for your son and the whole family as he is so young. Someone will be along soon to tell you their experiences. I have had a partial mandibulectomy and left neck dissection to remove lymph nodes. Surgery and recovery are pretty brutal but time does help and heal somewhat. Hopefully someone who has had the same or similar diagnosis to your son, will be in touch soon. Take care, follow the doctors advice. Hoping for the best outcome for your son. Best wishes. x

  •   ...Hi

    This just the most awful news. He is in for a bit of a rough ride to start with ... you both are but many people have had the same operation and have recovered well. There is a charity called Young Tongues. The name speaks for itself. Have a look at their website, https://www.youngtonguesglobal.com/ they have an active F*cebook page. There is also the Mouth Cancer Foundation Group https://www.mouthcancerfoundation.org/support-groups/ They have a weekly online support group as well as the social media page.  I have given you a link to their support group page where you can find out how to join their online meetings. They run on Monday evening at 7pm. They are really useful. Do look in. You won't regret it. 

    Hugs to you and Charlie

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Welcome! I am so sorry for your son and family. What horrible news and already so much for him to go through. 

    This is the age they are still finding their way and trying their wings in the world and he is so brave to go through this. 

    My child is only 12 but with my own history and a family member who had oral cancer I do worry. 

    I cannot speak of experience because I am older and had a different diagnosis but I hope his age and will be beneficial to his recovery and perseverance. 

    All the best. 

    *****

    Non-HPV tongue cancer T1N0M0? 
    Diagnosed Nov 2024.

  • I’ll tag a friend who has been through this. 
     

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Hi there,

    I went through this just over 4 years ago - although I was 55!

    There’s no sugar-coating this;, it’s a pretty brutal operation.Mine was during Covid and I was in for 12 days - no visitors. I was in Hdu for 24 hours and luckily, my surgeons/anaesthetists didn’t feel the need for a trach. I lost 1/2 my tongue - luckily I kept the tip but the margins just circled over the midline.

    Eventually I was stage 3 because of the size of the tumour, but my lymph nodes were clear and there was no metastasis T3N0M0.However, Radiotherapy was recommended afterwards.

    I’d highly recommend joining the FB groups mentioned by Beesuit - if nothing else it makes you realise that it’s not as uncommon as you might think.

    A few month after surgery, I wrote up a document called “Diagnosis & surgery” - mainly because i didn’t want anybody to be quite as “in the dark” as I was. It’s explicit - but I’d always rather be prepared!

    I could speak sufficiently to communicate in a few weeks, but was self- conscious for a long time afterwards - especially on the phone.

    I could eat steak and chips by week 7 - BUT, if he needs Radiotherapy afterwards (they’d usually wait 6-8 weeks for recovery from surgery, that will put him back again.

    If you “request friendship” we can dm and I’ll send over any other information that Charlie might find helpful.

    I’m absolutely happy to speak to him directly if he wants, but remember to look after YOU too. I can’t imagine how it must be to look on. He IS going to need some substantial help xxx

  • Thank you so much Heart

  • Hi Dani,

    Thank you so much for the advice - I had found young tongues but didn’t know they had a f*cebook group, and I will get signed up with the mouth cancer foundation. 
    i am hoping that his age will be in his favour for a good recovery.

    Emily

  • Emily, do let us know how Charlie gets on. Everybody here will be rooting for you both xxx

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Dear Charliesmum

    I am so so sorry to hear about your news. Even though my journey is different from your son's , I thought to "pop in" to send you both and your family loads of love and positive vibes. We are all here for you to support you in many possible ways. Make sure you look after yourself too. The journey might be tough but there will be light at the end. Just take each step and each day at a time. 

    Loads of love.

    Fab1

  • Hi can’t add to what others have said just wanted to say hi and good luck to Charlie and  remember look after yourself as well. Keep in touch 

    hugs 

    Hazel x

    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/