My Dad has just been diagnosed with this today and I can't praise his consultant enough -  so sorry to hear that you've had such a terrible experience. I am the same as you in that I can't find any information about this type of tumour and its progress. The Consultant did say that it was slow growing and rarely spread despite being malignant. My Dad is 90 though so we are going to review things in 3months because he is not well enough to have surgery. I hope things go OK for you 

SORRY FOR LONG DELAY!

having now seen 2 different consultants, who were lovely, plus having my original one apologising (in his own way) I now have a much better understanding of the tumour. I am told it is not a fast spreading cancer, (in fact, it is the best kind of cancer to have!) and although I did have mine removed surgically while awake, I now doubt if your father needs to worry too much. I originally had to have it removed because it was growing so big that I couldn't lie down comfortably, and at that time noone guessed it was cancer.

So, is your dad's lump actually growing? mine went from 2 cms for 30 years, to about 7 cms in just a few weeks. (but only a tiny bit was tumour, the rest was fluid)

I have had 3 follow ups so far, all of which have shown no sign of return or spead. I have been told I will not die from this! and I need no other treatment, just the surgery, no chemo or radiation.

I wish there was a support group, but I can't find one. best info on internet is Medscape.

If you want to ask me anything else, please feel free, I would be happy to help.

please post info about how your father gets on after the 3 month check! good luck to him xx

having it removed while awake was fine and painless. equivalent to going to the dentist, without the stretched mouth!. it took about 45 minutes including a skin graft from my neck - the only bit that was slightly uncomfortable, but only because of pressur being put on the neck. I wish it had been taken from somewhere else!

SORRY FOR LONG DELAY!

having now seen 2 different consultants, who were lovely, plus having my original one apologising (in his own way) I now have a much better understanding of the tumour. I am told it is not a fast spreading cancer, (in fact, it is the best kind of cancer to have!) and although I did have mine removed surgically while awake, I now doubt if your father needs to worry too much. I originally had to have it removed because it was growing so big that I couldn't lie down comfortably, and at that time noone guessed it was cancer.

So, is your dad's lump actually growing? mine went from 2 cms for 30 years, to about 7 cms in just a few weeks. (but only a tiny bit was tumour, the rest was fluid)

I have had 3 follow ups so far, all of which have shown no sign of return or spead. I have been told I will not die from this! and I need no other treatment, just the surgery, no chemo or radiation.

I wish there was a support group, but I can't find one. best info on internet is Medscape.

If you want to ask me anything else, please feel free, I would be happy to help.

please post info about how your father gets on after the 3 month check! good luck to him xx

having it removed while awake was fine and painless. equivalent to going to the dentist, without the stretched mouth!. it took about 45 minutes including a skin graft from my neck - the only bit that was slightly uncomfortable, but only because of pressur being put on the neck. I wish it had been taken from somewhere else!