Husband has tongue cancer and in lymph nodes - really scared

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New to this forum. My husband was recently diagnosed with tongue cancer which is also in lymph nodes in neck. He is due to have long operation (10-12 hours) next week where they will remove half of tongue, do tongue reconstruction, remove lymph nodes and a few teeth then after two weeks will have intense radiotherapy for 5 days a week for 6 weeks. Frankly I am utterly terrified, about whether he will survive the op and hearing that he will have to learn to swallow again sounds horrific. Can anyone help me understand what this might all be like. I know its going to be a rough road ahead but its all so unknown.

  • Hi welcome from me were a small friendly group now you’ve found us stick with us. I’m almost 6 years tonsil cancer  plus 7 lymph nodes treatments hard but I did it am sure you’re hubby will as well. I had 35 radiotherapy and 2 chemo mine wasn’t operable.

    my blog below Will help with the radiotherapy. There’s us a group on a popular social media site but depends if hubby is under 60 to join  sorry if that sounds vague we can’t post the link  

    but search young  tongues if applicable  

    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  

    Although I had radiotherapy this sort of surgery is beyond me so I’ve asked a friend  to pop on. She had exactly the same 

    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 there. This was me in October 2020. I had 1/2 - 2/3 of my tongue removed and reconstructed from my calf (tho most are from inner forearm).I kept the tip, tho it circled over slightly in the middle . My lymph nodes were clear but I had a neck dissection anyway as that is where cancer is most likely to spread. I was 55 at the time.

    it is absolutely doable - tho nobody would pretend that it’s easy; he will need a lot of support, but for me at least, the swallowing wasn’t too difficult. Speaking-wise - I sound like I have a bit of a lisp.

    i’m more than happy to “chat” directly if you like. I’ll add you as a contact so we can DM

  • Thank you -its just good to hear from someone at the other end of this. Feels like we are in a dark cave. Thank you for shining a little light. 

  • Thank you so much!

  • Good evening Inshuti, I am sorry to hear about your husband's diagnosis, like most of us as soon as the word cancer is mentioned we start to worry, some more than others which is understandable, to be honest, my initial diagnosis of cancer to the floor of the mouth and a bit of my tongue knocked me for six as it was the first time i had been to a hospital and never knew that head and neck cancers existed.I have had three big surgeries with reconstruction all in different parts of my head and neck the only way i managed to cope was to be as positive as i could and take each day as it came because you will find each day is different, some good some not so good.Its surprising how well the head and neck area heal up after surgery with great recovery and cure rates. You and your husband will find out that its like a jigsaw where everything comes together, it may be rough at times but with the skill and dedication of your husband's consultant plus the team of nurses and doctors. Most of us here have been through surgery/treatment of one sort or another and come through it in our own way. Wishing you and your husband all the best for the upcoming surgery,, take care.

                                                                        Chris x

                                                                                       

    Its sometimes not easy but its worth it ! 

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  • Thanks Chris. Positive stories like yours will keep both my husband and i going. We are taking each day as it comes, nothing for it but this forum is very helpful for us!

  • Hello. I’m new to this forum too. I’m also  having a partial glossectomy and neck  lymph nodes removed in 2 weeks. I’m also loosing teeth. I think I’m having 1/3 rd ( maybe half) of the left side of my tongue removed, with reconstruction from my forearm. 
    The thought of it all frightens me, but I just want to get it over so I can start my recovery. 

  • Hi Panch

    Im so happy to hear you can swallow and speak . Did it take you long to be understood? I’m also in my fifties (54) 

  • Rhubs, this is how i thought when i was first diagnosed i just wanted the cancer removed. It does sound scary as it involves a big operation with reconstruction, i have not had any tongue reconstruction but have had other reconstruction work done, and like you, they used my forearm as a doner site during my first operation which worked out very well with positive results for the reconstruction. Wishing you all the best for your operation and recovery, take care.

                                                       Chris x

                                                                                 

    Its sometimes not easy but its worth it ! 

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