Tongue cancer

Jg123 said:

He said it would be up to my max fax consultant at my first apt since RT to decide. Is this normal. Thank you.

Scans are indeed ordered by your consultant so that part is true. Twist his/her arm because 

Jg123 said:

I would prob not get a scan in three months as my cancer stage 1 no nodes was completely removed and RT was belt and braces.

Even with this diagnosis everybody pre Covid seemed to get at least an MRI if not a PET/CT. 

Oncologist insisted it's all visual. Said monthly check up for first year then second year every two months and so until five years. Will Def ask for CT I very much doubt it will be a pet scan. My team were absolutely amazing so I'm sure he will give me one if I ask. The oncologist said sometimes things don't show up on the CT or MRI is very small .thank you

Hi glad the xyimelts have helped still use 1/2 one 6 years later. Ask consultant for peace of mind. I had pet Ct scan but did have lymph nodes involved. Since then I Had visual checks and camera up nose. 

Hazel 

I hope you don't mind me adding that this has helped me - since my partial glossecomty in mid April my mouth and though has very dry (told I had dry mouth 6 years ago. 

I got Oraleve Gel which was prescribed previously but since operation find it so sticky and the Oravele spray with mint really makes tongue sting, so was looking at melts and wondering if I should get plain or mint - but now I will go with the plain.  

Thank you.

Jg123 said:

. The oncologist said sometimes things don't show up on the CT or MRI is very small .thank you

That’s true. It’s a compromise for the medics. Do you scan twice a year in case you miss something? I think in the USA they PET yearly which seems an atrocious radiation assault considering once you get to a year your chances are excellent. 
My centre always did MRI at 12 weeks till they got access to PET/CT 

Yes I think the plain would be better. I'm trying them tonight and will let you know if better than the mint. The mint was just more sensitive on my tongue. I got them on Amazon. 

Jg thank you - saw them yesterday on Amazon and thought I would try them.

Would be great for your feedback and if plain are more gentle as my tongue is very sensative at present.

Thank you

Definitely will try tonight. I got through the night with the mint ones for hood few hours. I was very pleased. Will let you know about  plain tomorrow. My tongue is super sensitive ATM.  Even a wee grain from bread is like a knife sticking into it. Wonder when this feels normal again. I'm going into 9 weeks post RT this week. Some days feel like week three. Thought it might have been bit less sore by now. 

I will check all this out with the max fax consultant in sept when I get my first apt. Can't believe last sept I was celebrating my 60 birthday and had a fab time and this year I am worrying about cancer x thank you 

Still feels so surreal but yet sooo long since biting my tongue on the 5 th Jan which actually saved my life.