Partial glossectomy

was diagnosed with tongue cancer end of May had partial glossectomy and neck dissection on June 4th 2019, the bloody cancer had gone into 3 out of the 47 lymph nodes removed but from scans the cancer has been contained locally in the neck. I am due radiotherapy soon which I’m bricking!!! Also been reading that people are still struggling to eat months post op. I am not too bad but my appetite is Poor as my stomach shrunk and I lost 3 stone (was overweight so it’s not been all bad news and I have more energy ironically) , is it normal to have a tingling sensation on post operation site of tongue. Not painful in anyway I am assuming it’s healing. They don’t seem concerned at the hospital. 

I have been given some pretty sound advice on how to protect your mouth from severe ulceration during radiation treatment so I am following said advice also rehydration of skin  before during and after treatment. Has anyone else have it in the lymph nodes?

  • Hi Winter 168 - me again. 

    I've a couple of tiny nodules right underneath my chin, had them ultrasounded and they said on was a blood vessel the other was a cyst - my surgeon had a look and a feel and he's told me to leave them alone as this is where they stiched my muscles back to my jaw.

    I've a scar literally from ear to ear (or 'ere to 'ere) and stiff neck, neck ache most nights every night by radiotherapy and resulting muscle fibrosis  apparently means that's me now for the rest of my days but uf you've not had to have radio them plenty of physio and stretching does help.

    Lymphodeoma - buy a babies hair brush, nice and soft and then gently brush down towards your collar bone - I find that helps but the lymphodeoma nurse can verify that for you plus show you some other exercises to do to stimulate the system. Mines worse than other days but it's been OK last few weeks (I'm 14 months out from my op and nearly a year out of chemo/radiotherapy) 

    How's your taste? I would have though you would have tried to include other textures by now, have some yogurt to hand as a spoon full of that helps even the pain killers go down.

    I'm just getting my sleep apnea sorted as my tongue stops me breathing at night so back on the CPAP for me.

  • Hi 

    Thanks for reply. I've managed Weetabix, cottage cheese , a bit of chocolate that tasted bitter, a pasta pot, trifle defo yogurt, creme caramel, mousse and custard. Can't manage rice pudding.

     

    Thanks for info on neck and lymphedema. 

     

    Doesn't sound great your sleeping hope my tongue goes down at night time 

     

    Thanks again