base of tongue cancer

Ok, so the dentist will check your teeth to see if you should have any removed at the back. RT is hard on teeth so they may suggest removing them. I've read on this forum that some people opt to keep them. We took the advice as his teeth were in a bad state anyway. Just for info he's going through regenerative dental work now, they've been great and all work required is bring covered free of charge on the NHS. Not sure if this is the case in England ...

Yeah worrying about the wait and it spreading is normal and totally to be expected. 

Ah now I remember we chatted on Bumblebees post !!

Read through that thread again, it may help to allay your fears

Re profile ... as Dani said click on your picture above and it should take you to your profile where you will be able to tell your story. It's easy and saves you repeating yourself constantly. 

You can then just jump back into your thread and continue talking to us as and when needed.

Hugs hon.  Its all scary I know ... we all do .. weve been  through it, theres always someond here to htlp whenever they can xxx

Don’t worry Susie. It is an aggressive cancer but that’s not the same as invasive. There is much to be done to get your treatment right for just you. 
The visit to the dentist is to make sure you have no teeth that will cause problems in the near future. You can’t have teeth extracted where they have been in the path of the radiation without risking jaw problems, you will have a visual check over and an OPG which takes an xray picture of your whole jaw  

Some people do have to have teeth out before treatment  mine are all heavily restored but I managed to keep them all  

Once your mask is made you’ll likely start a couple of weeks after that

hi yes i took the advice from Dani lol i started my own post but get messages from different ones i went on to when i first started lol i was all over the place,not used to these forums lol i have been on fb but no longer on any thing to do with Forums on that although ive kept on the Macmillan one and the Cancer research one.I had made a frightening mistake at the start and joined a "survivors of tongue cancer " one ,Boy !!!! did that frighten me. This one im still trying to get used to :) but everyone has been very helpful and supportive .big hugs to you all.so i dont get confused i will try and just talk about my fears on my profile lol I will get in the swing of it lol 

Susie said:

Macmillan one and the Cancer research one.

The CRUK forum website is awful. I gave up on it after a week. 

Susie said:

I had made a frightening mistake at the start and joined a "survivors of tongue cancer " one ,Boy !!!! did that frighten me

Good choice to leave that one alone. Sadly there those who end up badly but there are very few of those. The ones who populate these groups have even more sadly nowhere else to go and the chats end up a litany of folk outdoing each other with gruesomeness. 
It’s not a reflection of what happens to 99% of us. 

i honestly wish i had taken the advice given right at the very start of my journey and stayed clear of them

Well you are in a good place now....as I've said before, we will look after you. 

Hello Susie

Just popping up to wish you well and offer my positive story. I'm really sorry you're having to go through this, but you will get through it. I found this forum so helpful when I was going through diagnosis, treatment and recovery. Ask us anything you like.

Very best wishes

Catriona

PS I love coffee, it started to taste horrible while I was in treatment but my taste buds recovered and I'm enjoying it again now

Hi Thankyou so much for your support :) i read all of your full profile and its very helpful and positive thankyou.I am looking forward to getting past all of this and reading people stories are a big help.I get my mask fitting on the 18th of this month,my petscan showed activity in some of my left lymph nodes and a tiny bit on the right but they were going to do the radiotherapy on both sides anyway.I am going to a place called Queens part of Castlehill hospital in East Riding of Yorkshire.everyone are fab and help all they can :) i do wish i had never had to meet them though lol lovely as they are i never dreamed i would ever be making this journey and i had never even heard of this type of cancer.but now very shocked to hear of it more and more.I am so happy you are doing better and better and looking forward to a great future  and enjoying coffee again lol 

i have had the radiotherapy mask fitted ,,crikey i didnt think it was that big.I was not keen as it was very tight but i know i need to have it,i have SCC T4N2MO AND P16 negative..im not really sure if these are bad numbers are bad. I start treatment on the 4th Aug. I am getting the peg fitted on the 8th August My partner wants to come with me and wait on my first day but i could be there for several hours as it will be when i get chemo and radiotherapy.I am getting 30 sessions 5 of which will be the chemo/radiotherapy  I know he would not be allowed in the treatment room itself but not sure if he can wait in a nearby smaller waiting area as ive been told i will be waiting around quite a bit.I am getting my treatment at Castlehill hospital Queens Hull.