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 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
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
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
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.
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
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