Rare Tongue Cancer

Hi just got the news, I have a very rare tumour at the very back of my tongue that's not operable due to its location. I'm waiting on MRI and PET Scan appointments. Radiotherapy and maybe chemotherapy has been mentioned. Has anyone this rare tongue cancer......

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  • Hi Mary,

    After a visit 2 weeks ago to the ENT department at my local hospital I was also  diagnosed with a cancer behind the tongue, I've just been informed that I'm going for  MRI and CT scans next week but not sure what happens after that, I would presume a biopsy is next but I've not had any notification of when that might be or what the treatment options are, I have heard though that biopsy results are taking up to 5 weeks to come back, hopefully this might be an exaggeration, with luck I'll get some news soon.

    I'll keep you updated on my progress but I do hope all goes well with you.

    Best wishes

    Peter

     

     

  • Hi Peter,

    I started out my journey by going to my GP. He referred me to an ENT and the ENT sent me for a CT straight away.  From there I got a biopsy and met the consultant with the results. She gave me the news that I have a tumour, a very very rare tumour in the tongue. The tongue also produces saliva and it's my understanding it's there the tumour is, at the very back.

    Also I forgot to mention I got teeth removed at the time of the biopsy. They were my implants.

    While waiting to for my scans I have been told to make appointment with my dentist to do a check on the rest of my teeth.  They are all in good and got a cert to give to my cancer team.

    I have just done my MRI with dye. I didnt mind the noice of the MRI machine but they wanted me to wear a shield over my face which I couldnt bare. The lady said I didnt have to wear but it gives a better picture on the scan.

    Also this week I was fitted for a mask for Radiotherapy.  It's a mesh like thing over ur face,  I hope I will be able for this.  

    I have been given a start date for my Radiotherapy but no time. It will be the end of this month.

    I will keep ye posted.

    Look forward in hearing anynews anyone has.

    Thanks Mary.

     

  • Hi Mary,

    Thank you for updating me on your journey so far, things seem to have moved quite quickly for you, I've had the symptoms since July so I think mine will now be quite advanced which is worry to me and I've now developed a lump in my neck, so I'm both anxious and keen to start treatment as soon as possible.

    I don't think I'll be to keen on the mask either, but It looks like both of us might be having similar treatment at about the same time, I will certainly keep you updated on my progress.

    Best wishes

    Peter

  • Hi Peter,

    It's only this week, the ball has got rolling for me (which has made me very nervous and hope to have the will power to carry out this) as I have been waiting for MRI scan for a couple of weeks. Just waiting on a PET scan. 

    How are u with eating. I am taken Fortisip drinks and like the peach and mango, I can manage Salmon, pureed veg. and potatoe mash. I dont eat eggs or chicken. So I am very limited.  It takes me a very long time to eat but I'm in no rush. I have taken up deserts, cheesecake, custard, rice Pudding. To build up some weight. I am in around 10st. 

    Chat again Soon.

     

  • Hi Mary,

    Glad things are moving, I'm nervous about what's to come as well and I find sleeping at night quite difficult due to anxiety, but then I think let's get this over and done with so I can get my life back so that thought gives me the strength to carry on.

    I find eating a bit difficult due to the pain in my throat and also swallowing can be awkward but if I take water I can get most foods down, but wine and chocolate for some reason hurt like hell when I swallow!

    Although I've been eating regularly I've still lost a stone in under two months and the weight is still dropping off dramatically which is a worry to me.

    It's ironic that earlier this year to try and lose weight I'd stopped eating all the bad foods like buns, chocolate and biscuits etc. Now I'm back to eating these foods again to try and gain weight, but to no avail!

    Best wishes

    Peter

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  • Hi Mary,

    Glad things are moving, I'm nervous about what's to come as well and I find sleeping at night quite difficult due to anxiety, but then I think let's get this over and done with so I can get my life back so that thought gives me the strength to carry on.

    I find eating a bit difficult due to the pain in my throat and also swallowing can be awkward but if I take water I can get most foods down, but wine and chocolate for some reason hurt like hell when I swallow!

    Although I've been eating regularly I've still lost a stone in under two months and the weight is still dropping off dramatically which is a worry to me.

    It's ironic that earlier this year to try and lose weight I'd stopped eating all the bad foods like buns, chocolate and biscuits etc. Now I'm back to eating these foods again to try and gain weight, but to no avail!

    Best wishes

    Peter

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