Hi I have just discovered I have base of the tongue cancer and I need to have chemo and or radiation treatment they said I should have my tongue taken out but no thanks any one know of this new treatment and where I can get it. http://www.ncbi.nlm.nih.gov/pubmed/18528311
I just wanted tyo say my husband has had a total glossectomy so if you have to rethink that option and want to know what life is like for him please let me know and I'll help any way I can.
Wow that sounds horrendous did they try chemo and radiation treatment first or was he too far gone for that did he have base of the tongue cancer so what is his prognosis now can he swallow did it deform his face how is he standing up to the state he finds himself on now
Yes thanks you please let me know
Kind regards John
Laurence has Adenoid Cystic Carcinoma which doesn't respond well to Chemo or RT plus yes it had gone too far due to being misdiagnosed for 3 years by our local hospital. The only option was total glossectomy or to choke to death as the tumour blocked his airway. The primary site was the Salivary Gland, he was in so much pain he would have had anything done to relieve it and unfortunatley a total glossectomy was the only option. He can't swallow foods or liquid but he can swallow what saliva he makes so he hasn't had to have his voice box removed and a permenant tracheostomy done, which they told us might happen. He has a PEG fitted that all his food and water plus his beer goes down. His speech is obviously not the same but he does amazingly well in fact they can't get over how well his speech is. The Surgeons did an amazing job following the creases and folds of his skin so you can hardly see the scars. He also had 33 sessions of radiotheraphy to his face and neck to try and get any that was left.
He has secondaries in his lungs and liver so he is uncurable and everything he's gone through is pallative but the good thing about ACC is its slow growing, we are under the care of the oncologist at the moment and scans between last december and this april showed no visible growth fingers crossed for monday as we get the results of the scan taken this month.
He is an amazing man and he comes out with us for meals and as I said he has a beer into his PEG we go abroad on holiday and all in all life is good. When he failed the last video swallow I asked him if he was really upset his answer was "I'm disappointed but at least I'm still alive"
I did a web-site for family and friends to follow his progress when he was first diagnosed if would want to you can read what the consultant told us and follow his progress also piccys on when he was in hospital and now. http://www.freewebs.com/shezbert/
Anything else just ask
Shezbert I have just been informed i have base of the tongue cancer and will be treated with radiation and Chmoe for 7 weeks the part I need to check up on is I need to go into hospital for a week i dont know what for.
The Doctor said I have T3 N2 stage and after the treatment he is looking at giving me an 80% chance of living 5 years or more, if Im treated now.
Sorry to hear about your Problems and glad to see your still free to live a quality of life you enjoy, its so good you have a care net work and you can slowly get your strength up to go about semi normal things to say your enjoying life as much as possible under the restraints you find yourself in.
Keep in touch thats for reminding me about this forum as I lost it.
I notmally write on http://oralcancersupport.org/forums/ubbthreads.php?ubb=cfrm who are so blunt and upto date with all the latest treatments and survival stories.
See me Teacher jon and come and join us there, "Introduce Yourself", is where you start.
Kind regards john
my husband was told that he had tongue cancer that showed up on the pet scan it had spread to the glands in the neck. When they did the biopsy in surgery the pet scan was wrong and the cancer wasnt in the tongue just his neck. He just had the tumor taken out last week. Could they do any sugery for the tongue cancer besides taking the tongue out. It sound terrible but you dont want to let the cancer spread any farther by leaving the tongue in. Good luck.
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