Hello There,
I'm a 47yr old(M) from Scotland who discovered something which looks a bit sinister on the under side of my tongue where it meets the floor of my mouth, just to the side of the vertical piece of tissue which I think is designed to stop your tongue disappearing down your throat if you lift it up too far!? (sorry I'm trying to keep my sense of humour whilst being worried and paranoid at the same time.)

I came across your forum whilst scouring the web for info hopeing to calm my fears but I think it has had the opposite effect. Anyway you all seem a nice bunch and this seems to be the best place to belong to when you need help, advice and maybe some support too.

I've been told by a Specialist friend that there,s a good chance it's a SCC [ Raised nodule type piece of tissue with a white grainy coating which is slightly rough when I run my tongue over it]less than 1cm although biopsy isn't until 4th Aug.

I've been a heavy drinker and occasional smoker for about 25yrs, and have already lost my Pancreas through the drink so we'll be surprised if this growth turns out to be nothing at all.
Don't get me wrong I'm not being morbid but I'm the type of guy that always looks for the worst case scenario, then if it turns out better it's a bonus.
My main concern is that I am an Insulin Dependant Diabetic (which delays healing and more risk of infection.)
Is there anyone out there who is an I.D.D. and who has had treatment? I just wanted to know what pitfalls to look out for and anything problematic to do with the Diabetes.
Also what tests are done to see if the C has Metastacised to the Lymph Nodes?
It seems from your experiences "Across the Pond" that you all seem to get treated quickly from date of diagnosis and I know it's imperative that this type of thing is caught quickly, my concern is that I've had this growth 4 weeks now, my next visit to the hospital is on the 4th AUG, and any remedial treatment could be as long as 6weeks after that.
The problem in the U.K. is that because of our National Health Service setup we cannot choose hospitals and it can often be a lengthy wait for treatment. Do you think the time scale above is a bitlong between discovery and treatment? My only other option is to go Private Which is horrendously expensive.
Reading this for the first time you couldn't be faulted for thinking I'm being a bit premature, it's just that when you find something like this for the first time it preys on your mind and it seems like an eternity before you get the right answers.
If I've offended anyone who thinks I've no right to be on this site right now, I apologise profusely, But I would feel very humble if anyone could find time to reply.

Kind regards,

Colin.["Across the pond"]

Hello Colin,

Welcome , we are sorry you find it necessary to be here, but you are in the right place. I guarantee you no one will be offended by your posting. The only reason people don't receive answers sometimes is no one has an answer.

I believe there is one member maybe more whose husband has gone through treatment with diabetes. Hopefully they will see your post.

As far as waiting for diagnosis and treatment, to me that seems very long. Do they not move people ahead depending on need and the types of problems they have? If you are indeed diagnosed with cancer this isn't a slow growing type of cancer. Please read around the main site and the message boards for information that may prepare you. And know that we'll be here if you need us.

Take care,
Dinah

Colin,I am not sure if I am a right person to give you some response because I am also diabetic (type 2) but not sure whether it is IDD or not. Any way, being diabetic can slow down healing progress and the feeling of tiredness can be worse than others during treatment. I stopped taking diabetic medicine in the middle of treatment because I couldn't swallow pills. I could only take panadol and morphine syrup to reduce pain but this had largely increased my blood suger level. The oncologist told me that the major concern that time was to kill the cancer cells and the diabetic problem was put aside. I am almost two years post diagnosis and yet there are still some minor ulcers on my tongue. My doctor said the wound heals more slowly than others because I am diabetic. My blood sugar level has been under good control after I was able to take tablets by mouth and I keep on doing exercise. Hope my experience helps you feel a bit better.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Many Thanks Dinah and Karen,
Yes your information and experiences are exactly what I'm looking for and it's really awesome to get not one reply but two - and both in the same day! I think I'm going to have to pull out all the stops to get this whole process speeded up if it's at all possible.

Once again thanks from the bottom of my heart for your kind words of comfort and advice.[ I must go and try to sleep as it's 0250 a.m. here]

Best Wishes,

Colin McIntyre.[Bonnie Scotland]

I learned long ago that the only stupid questions are the ones that you do not ask. The OCF boards are here for just the purpose that you are putting them to. To help individuals when possible, member of the big C club or not. With any luck we won't have you as a real member in the future. You have a right to be concerned, but let me offer you these observations. The only way to know for sure if you have a SCC is thorough biopsy. Even those with a highly trained eye cannot tell, as there are many other things which occur in the mouth that mimic oral cancers, but are benign. Only a microscopic examination of the cells holds the definitive answer. Another thing on your side is that 75% of those who come to this cancer do so through tobacco use for a prolonged period, which it would appear is not the case with you. And while excessive long-term alcohol consumption is listed in the causative factors, it is not one of the big ones. As I am only slightly familiar with medical practices in the UK, I do not know if there is a mechanism for speeding things up. But certainly getting a biopsy immediately is important (and therefore a diagnosis but not a staging), and this is not an expensive thing to do privately. Any oral surgeon should be able to do it for you on short notice and have the sample taken to a laboratory for analysis. Turnaround time in the US is about 3 days for an answer. Peace of mind might be worth this out of pocket expense. If it does turn out to be something bad, you are already at the head of the line to get into the treatment process. If it is not, then it is that many fewer days to be worried. It's just a thought, but it might sound practical to you.

Hello Collin, My hope for you is that things are much less fearsome than they seem at this moment.

I agree with Brian that the cost of a diagnosis is perhaps low compared with not knowing. I would gladly spend everything I had to know that I had no cancer. If you spent everything you had on survival would it be worth it?

If in fact you have the nasty "c" it would seem that it is still quite small and therefore a much better thing. Your writing is extremely polite and that suggests character. Be diligent and persistant in your next steps. You must not feel shy about writing here. If you don't have "C" then we will all rejoice in that fact. If it turns out you do have "it" then we will do our best to help you.

Hi Colin,

The description of what is on your tongue sounds very similar to the SCC found on the underside of my tongue. I have been one of the relatively lucky folks here and my treatment has not been too bad thus far. You are in my prayers, and we are here if you need us.

Sincerely,

Hello Colin

My husband was diagnosed with SCC of right tonsil 6 weeks ago. Although his C has spread into submandibular lymph node (this is how he discovered), nobody seems to rush. So far we've been discussing treatment options, going through tests, dealing with insurance logistics, got second opinion(for which we paid out of our own pocket). Finaly his treatment(external beam radiation followed by surgery and brachytherapy) starts on Tuesday.
When we mentioned time factor, one of the most prominent head&neck cancer surgeons in New York Metropolitan area said "It's not and emergency, but I woudn't wait longer than 3 month".

So, it's not a fire, Colin and I hope after biopsy it will apper fals alarm only.

God bless you and everybody one way or the other connected to OCF
Eda

Hello there,

Thank you very much- Brian, Mark, Lisa and Eda
for taking the time to reply. I feel very humble and privileged, My faith in humanity has been restored, I didn't expect to receive so many kind and considerate replies!
Your timely advice and suggestions I will definately take on board and I will explore every avenue open to me with regard to getting things moving a bit faster.

It's comforting to know that there are so many approachable people "out there" who will lend a listening ear to people like myself.

Once again, Thank You all very much indeed, I have been made most welcome and I will keep you posted as to how everything goes.

I wish you all the very best.

God Bless!

Colin McIntyre [Bonnie Scotland].

Oh Colin,
Don't apologize for being on this site. You will meet the most wonderful people on earth here. We are still friends and neighbors....you're only "across the pond" right?
Love and prayers,
Mandi