Hi Gill I have also just found out I have Tongue cancer on the 2nd of Feb, I have had a sore like a little white spot on my tongue for about six weeks then went to doctors and they sent me to maxi facial and the doctor said that it looks like my tooth was rubbing onto my tongue and said that I could leave it if I wanted to, but it was hurting so I said could they take the spot off and he said there wasn't any rush to leave it for about 6 weeks, I had the biopsy about two weeks ago with a follow up appointment in middle of March because they didn't think it was anything then had a phone call a week ago to come an see doctor that's when I found out I had cancer .

I have just had a CT scan and a MRI just waiting to meet with the doctors to find out results to see if it has spread or if its only on my Tongue which will only need lazering fingers crossed.

What kind of operation will you need.

Regards

Jayne 

Hi Jayne

i dont know yet what the operation will involve, i will find out this thursday(18th). i think they will need to take some of my tongue away and rebuild it with muscle from my leg ( but htis is just me guessing at the moment) . i will only find out about my scans on that day as well.

i am still very scared and the pain is a little worse than a few weeks ago. i get alot of pain in my left ear and this is worse at night when i lie down in bed.

do you know any more yet about what will happen to you. i hope it all goes well for you. x

Hi Gill 

Yes my GP phoned on Friday to let me know that the CT scan and MRI looks clear the cancer hasn't spread, still waiting for appointment with the doctor they said it will be this Wednesday (17th) and if they haven't rang me by Monday ring them so will know then what they are going to do the doctor did say that he thinks they caught it early so should only need lazering about 2p in size.

It is very scary not knowing, I also have a slight ear ache mainly when I'm in bed.

Fingers crossed hope everything goes well for you x

Hi Gill and Jayne.

Sorry to hear you have both been hit with this horrible decease. No doubt you feel in a bit of a daze.

I just wanted to post as I was in your position a year and a half ago.

To cut a long story short, I am now completely back to normal. I had to have part of my tongue lazered, and I can only say in my personal experience, there was hardly any pain. The biopsy was the worst of it, but the actual operation on my tongue, apart from an ache, and getting back to eating normally, I did not have much pain at all.

The best thing to do is to take each day and event as it comes, and not to worry about what might happen, just focus on the hear and now, until you have reason to do otherwise. 

Its difficult to say how you will be after the op, as it depends how much of your tongue is being operated on and its location, but I the front left of my tongue removed, 3/4cm, and I was able to drink as soon as I was awake, its a very odd sensation, and your spill your drink from your mouth, but you will learn to adjust.

Your find the strength to get through it, and you will make a recovery. 

This is the thread I first went to, and I found it very helpful, lots of people are here to support you.

www.cancerresearchuk.org/.../tongue-cancer-diagnosed-two-days-ago

Please keep us updated both and the best of luck to you.

Hi it's nice to hear from someone who has gone through the same thing and everything is fine with you now it is scary the first few days where the worst thinking what might happen and worrying, I have three children the youngest being 7, but having spoken to the cancer nurse and getting reassurance from her saying they have caught it early I feel a lot better now, just got to see what the doctor says on Wednesday.

Hi Gill just wondering how you got on with seeing the doctor on Thursday, I went to see the doctor On Wednesday and he said my nymph node in my neck is slightly swollen so I had to have ultra sound and a needle in my neck to get a sample he said he was 99% sure it's nothing but they need to be on safe side so I have to wait another two weeks for them results before he can do any surgery.

Hello Gill

I have just joined this forum and saw your post.  I do hope everything is going ok for you. Yes, it is rathrer scary to know one needs such a drastic operation.  But hopefully, my story will give you some optimisim.  I had stage 4 tongue cancer 34 years ago, yes, im still here 34 years later thank goodness. It was pretty bad, i was not expected to survive.   I had a tracoctomy in my thoat, my face swelled up hence the need for a tracocotmy.  I had a skin graft and neck disection.  At the end of all this there was radiation.   May i suggest the following to you: 

1 -  drink plenty of water after any radium treatment, it will help.

2 - you excersie your mouth, get it open as wide as you can, as soon as you can.

3 - Look after your teeth as they will be affected by any radiation treatment.   

I believe the radiotherapy treatment has changed alot since my day and they now give creams to calm the area down.  So hopefully, if you need this, your neck will not be burnt like mine.

There are important points, that unfortunetly i learnt on the job ha ha 

Well im still here, i have been eating everything, (but things are starting to get difficult now in my later years).  I enjoy a full life. I learnt to talk again, not perfect, but at least i can use the phone and most people understand me on the telephone. Face to face talking does not prove much of a problem.   I just live a normal life, i accept i have a speach disability and an eating disability but hey, im here, saw my childrent grow up and im now around to see my grand children grow up.  One has to accept the inevitable otherwise one will never be happy, so just concentrate on the positive not the negative.  I do hope yours is not as bad as mine was.   Good luck and blessings.

Suzy