Just been diagnosed with tongue cancer

Hi KitiKat 

so sorry for your diagnosis but the good news is that it’s been caught early. 
My neighbour had exactly the same. She had a small resection that needed no reconstruction and three years later she is as fit as a fiddle. 
There is a really useful group called Young Tongues https://www.youngtonguesglobal.com/

Check out their website. They have an active social media group where you can meet many others in the same position as you. 
Hope you can get your scans soon to put your mind at rest. 
The CT is a doddle and will take only fifteen minutes or so. The MRI is a longer scan and is very noisy. You’ll get headphones to cancel out the sound. 
I had a cancer on my tongue but had no surgery so can’t help there but somebody will be along who can. Meanwhile check out young tongues 
Stay with us and let us know how you get on

Best wishes 

Hi Dani thank you for your reply. That's reassuring about your neighbour. I hope that'll be the case for me. I'm so sorry to hear you have also had tongue cancer. Did you just have radiotherapy? I might have to also have this. I've read some scary things online such as people having teeth removed. Was this the case for you? I'm so terrified about what's to come. The waiting in between appointments is so long. I thought i'd be booked in quickly for the operation but I've been told it should be in the next 6 weeks. Surely the cancer can spread in this time?. Also I first reported this unhealing ulcer to my GP back in July. They told me to see a dentist who said it was nothing. After another week with no improvement I begged for a gp to see me, had to wait a couple of weeks for an appointment and that GP told ne it was nothing. I knew something was wrong so had to beg to see another GP who finally referred me to the oral and max clinic. I'm disgusted at these so called medical professions brushing me off and not doing their job properly. The NICE guidelines clearly state as does the NHS website, that if an ulcer doesn't heal after 3 weeks the patient should be referred to a specialist. I have such terrible anxiety and can't sleep at night. I also feel huge guilt because whilst I don't smoke now, I did smoke for about 25 years as well as drink too much alcohol. I brought this on myself and its hard to deal with. How did you manage the anxiety? Also what's worrying me is that I have a large amalgam filling and my tongue is pressing against it. People can develop and allergic reaction to mercury which can lead to ulcers. I'm desperate to get the tooth removed (it's in a bad way so no point replacing the filling) but the earliest my dentist can do it is mid November which is around the time I'll be having the operation. I'm convinced that this filling is making things worse but feel like it'll never be removed. 

Hi KitiKat 

I had cancer at the back of my tongue which couldn't be operated on so I just had 30 doses of radiotherapy. I didn't have caner in my lymph nodes so I escaped chemotherapy.

There are good reasons to have teeth extracted prior to RT if they are unhealthy because extractions afterwards are potentially dangerous.I didn't need any and if your teeth are healthy then they will probably be left alone. Don't worry about your problematic tooth. Just make sure your team is aware of it and they will deal with it

I agree that so many of us are let down prior to diagnosis...it's a disgrace. We have to fight to be heard

While you wait all you can do is keep busy and if you can't sleep see if your GP will give you some mild sleeping tablets. I knew what was wrong, even before I went to my GP. I'm a retired vet and I know exactly what a squamous cell carcinoma looks like so I wasn't particularly anxious. I think it's the not knowing that can poleaxe you. I was in pieces inside waiting for my PET results in my oncologists waiting room. I felt physically sick but that was the extent of my worry. 

You are in good hands being treated by a team who do this every day and they are good at it. Hopefully you won't need radiation which would be a blessing.

Please please ditch the guilt about past lifestyle. Don't blame yourself. There are millions of people with worse predisposing factors and they get away scot free. It's just bad luck. It's good that you don't smoke any more. It will make recovery much easier.

Hang on in there KitiKat 

Hugs

Hi Kitikat.  Please don’t blame yourself.  My tongue cancer was caused by the HPV virus snd my consultant said nothing to do with lifestyle.  ie smoking and drinking.   These cancers are very curable. All good wishes.  Lizzie 

Hi Kitkat.  I was in the same position as you at the start of the year ( please see my profile).  As Dani says try  and keep yourself busy and keep away from Google.   Hopefully your journey is as short as mine.   

I had stage 4 tongue cancer diagnosed last year, didn't have surgery, had chemo & radiotherapy, it was tough but I'm fine now. I didn't have to have any teeth removed. Your cancer had been discovered early which is a big plus - try not to agonise about the wait. It's a really tough & anxious time I know. Sending love & luck

Catriona

Hi Kitikat

The diagnosis is horrible & I, like you, had to wait ages to get it (7 months by which time it was stage 3)

The good news is they have caught yours early, I know its easily said but try not to worry about the things you can't change.

You will be amazed how many people you speak to know someone who has had a similar experience & are now fine. Also in my experience all the cancer staff are lovely & the people on here are really supportive & have lived what you are going through so listen to their advise but be aware that we are all only telling you of our journey.

Be strong, you will get through this. There are so many positive stories to be told & you will become one of them

I'm going for my biopsy results tomorrow , I'm worried and my anxiety is through the roof . I have a flesh coloured mass at the back of my tounge with a ulcer like top  , my tongue is white on top my teeth on one side feel gritty and in turn are making my Tongue feel sore . Before the biopsy I could hardly speak without chocking but since biopsy was done the mass has gone down so I can eat and talk properly now 

Hi best wishes for tomorrow. Hopefully you won’t need us but if you do we are all here for you.

Hazel x

Thankyou Hazel. It's been a hard couple of days and I've got 1 more sleep till my appointment . I'm hoping the biopsy results are in . Part of me thinks if the consultant thinks it could cancer then it probably is . These people are trained at spotting cancer and see it everyday . I feel after tomorrow my life will completely change if not a positive outcome . I can't help feeling its a count down