hi all here, just want to wish you all the very best in the future and to let you all know that reading most of the stuff on here has reduced me to tears.

i am a 31 year old male from the u.k and am waiting to go back to the hospital at the beginning of december to get my mouth looked at again.

i was originally referred to hospital by my dentist in 2001 when he spotted an area of concern in the floor of my mouth,
at the time i was worried but not to a great extent as i wasnt aware of exactly what it was all about or what it could eventually lead to, after 2 biopsys and being monitered on a 3 monthly basis for 3 years i was eventually given the all clear to walk with no further returns to hospital required.

on getting the all clear i asked the doctor if the patch was just a stain related to me smoking and drinking to which he replied no its the really early stages of oral cancer, now nothing was explained to me in technical terms at the time and i dont know if that was due to me only being 25 years old then, but with me trawling the net and sites like this and other oral cancer sites what i have in my mouth to me looks like homogenous leukoplakia.

now that was in oct 2004 when i got the all clear but since then i have still had the odd cigarette and drink session with my friends but maybe only once a week and this is where my problems start again.

ive always been scared of the dentist and after getting the all clear at the hospital never returned to the dentist but ive kept my teeth as clean and healthy as possible over the last 3 years and only recently thought that maybe the lesion has spread slightly, so in may this year i quit cigarettes and alcohol COMPLETELY, in hope that the leukoplakia would clear up, 3 months after stopping the occassional drink and cigarette routine i got a sore throat ( when i swallowed ) which i thought would dissapear, as everyone had it at the time, so instead of going to the doctors for penicillin or anti-biotics in the first few weeks i left it and started to trawl the internet for 8 weeks looking at all the worst case scenarios and self diagnosing myself that something had spread from my mouth to my throat before deciding to visit my doctor eventually !!
doctor prescribed me anti biotics which took the sore throat away after afew weeks but he didnt seem too bothered about my mouth and said my throat looked fine , but i had read that doctors dont really know too much about mouths so decided to visit my dentist and get registered again and get looked at.

told dentist my full story and my new dentist said it looked fine, he got the original dentist who looked at it 6 years ago to look at it who said from memory that it didnt look to have changed too much but would refer me back to maxillo on the basis of me being concerned, all teeth are in great condition and when i visited hygenist for scale and polish on thursday she also said that it looks like homogenous leukoplakia but looked fine and smooth with no bumps or red patches etc etc and told me to relax a little as thats 3 professionals looked at it and dont seem too alarmed.
i dont know whether to take comfort from this or not as im 100% sure it would have to be biopsied again and looked at under the microscope as its the only way to tell what the state of this is.

i have been off my work now for 4 weeks with worry and have another 4 weeks to go before my first hospital appointment again and have been put on diazepam tablets to keep me a bit more calm as ive got myself into an awful mess and now have my poor mum and dad woried too.

thats where the wimp part comes in to this, i havent even been diagnosed with anything whatsoever, only in my own mind, and im mentally in a mess and everyone keeps telling me to get my chin up and think positive
and when i read some of the stories from yous people in here it breaks my heart and also to see how strong yous all are is amazing.

i also have a 8 year old daughter and the thought of her seeing me if i had to endure any of the terrible procedures most of yous have had to go through also turns me to a nervous wreck, any time i think about her i end up with tears rolling down my face, what a state to be in for a physically fit 31 year old man !

theres days when i think i still feel something not right in my throat but my mum says it could just be nerves, then theres days when it feels absolutely fine, and its on those days when i feel that i want to just phone the hospital and cancel the appointment, get back to my work and TRY and forget that the last 3 months had ever happened. i dont know if my imagination is running wild and there is or isnt anything wrong in my throat area.

it looks like the leukoplakia is getting lighter and lighter in appearance since stopping the alcohol and cigarettes to be honest, but its such a catch 22 situation, i am so scared to have to be going back to the hospital and going through the biopsys and the worrying wait for results and really dont want to go, but if i just left it and there is something wrong well thats just plain selfish of me when i have a loving family and beautiful daughter to think about.

i should have stopped the smoking and drinking 3 years ago on the all clear but i guess being young you think your missing something when all your friends are out and you think you are invincible, but i can asure you if all is o.k this time i will never have another drink of alcohol again never mind a cigarette, that might sound crazy to never have another drink but im sure its lead to me being in this situation, cant imagine how people who never drink or smoked must feel who end up with this terrible disease. i wish i could go back and never have started such a filthy habit, tho i seen a full on debate about smoking on these boards but thats how i now feel.

being in this state and not even having being diagnosed with anything wrong with me, i dread to think what i would be like if there was some thing up, thats how i feel so out of control and in a mess.

i have looked on at this site from the back now for 8 or 9 weeks and every time im here i end up with tears streaming down my face, i hope yous all stay as strong as yous show, i just couldnt hold back any longer and had to post how i am feeling, although there isnt actually anything up yet, thats why i feel like such a wimp when i see what yous people have been through.

sorry for rambling

Derek

Derek

Thank you for being so open, and I can understand you fear, But a biopsy is the ONLY true way to know ..We like to say here that it isnt cancer unless the Pathology says it is. SO as hard as IT is Take a BREATH and SLOW down . You can't change ANYTHING right now . SO slow down and enjoy that Little girl and wait to see what that biopsy says , and I KNOW it is sooo sooo soooooooo much easier said then done .

And PLease please kNow That many of us survive this JUST FINE ..It isn't nessacarily a death sentence so don't think so , and NO it isn't easy or FUN by any means..But def Doable I mean alot of us are here to tell about it . As far as your daughter , don't walk down that path at this point , you dont know anything , and you would be surpirsed how well kids do , I have 5 children and they will amaze and suprise you and be your strentgh and and force you to be strong .

As I said it is early and Hind site is always 20-20 ..we have all made decisons in our live where we say ..why did I do that ? But That is how we learn. so please , you have come to the right place and know that we are right here waiting to hear how your biopsy turns out


Shar

Derek,
Hopefully, having posted, and as you receive replies, your mental state will ease, if only a little--just having someone to talk to about it helps!

I'm pretty sure I posted something with a similar title to yours, around May after having an 'unplanned' biopsy!

The worst thing for us Brits, I think, is the long waiting time to actually 'get into the system'--once 'in it', things move along and all our questions are answered, but it's that initial waiting and worrying.

Try and remember that it may well NOT be cancer, and even if it is, everyone's case is different and all have different responses to treatments.

This is the place to come and post to relieve some of that tension--everyone will comfort you and answer any questions which they can during this interminable waiting time.

Whereabouts in the UK are you by the way?

Brenda

thanks Brenda, im in Scotland,
as i said been biopsied twice before and all clear , so hopefully same this time again and im getting in a state for no reason. 3 people at dentists seemed happy enough but i dont think i will be happy till its checked at maxillo again, though im terrified to have to go through all this again, especially for my parents and 8 year old daughters sake, the suspense is making me physically sick, and as i said its good to have somewhere to post and have people listen but honestly, reading the stories up here makes me cry, im a physically fit 31 year old male, but im not ashamed to say how saddened and emotional i get by reading some of yous peoples fights, yous are so so brave.
i wish each and every one of yous the best

thanks

Derek

Derek: We may be an ocean away from you, but we're ALL here for you!

Keep us posted as to your condition, and know that we're thinking of you and hoping for the best!

Lois & Buzz in NC (the S.E. coast of U.S.)

Hi Derek and welcome to OCF.

Your post raised a few things,and perhaps we betterlook at them individually.

Firstly,i have never heard of any one being told they have the "Early stages of oral cancer",and then being left without follow up checks at very regular intervals.If you read the related posts on these boards,you will find a lot of people diagnosed with leukoplakia that may be going to cause a problem at a later date,have to go back to the Doctors for check ups at least every few months.It is not usual for anyone with a potentially dangerous disease to be discharged without follow up,if there is any doubt.

Secondly your throat problem.You say you waited 8 weeks to go to doctor and then it took a few weeks for the antibiotics to help.Well again this is very unusual.Antibiotics are prescribed for a course of usually 5-7 days ,and in that time they work or they dont.The time scale you refer too doesn't add up,and i wonder if because of your anxiety,your Doctor tried them to give you peace of mind.

Thirdly you say you are off work.Why?sitting at home worrying is very counterproductive and will only make your anxiety worse as you focus more and more on your perceived problems.You need to keep busy and your mind occupied and ultimately if you have a problem you will need time off then not now.

The internet is a very powerful tool and sites like this do so much good.But i can remeber when i was a student nurse,in the first year of my training i had every disease known to man.The more knowledge i aquired the worse it got ,and in some respects this has stayed with me throughout my life.My kids never had an ordinary headache ,they had potential brain tumours or meningitis,chest infections were pneumonia before you knew it,and as a new Mother i was a wreck worrying about cot death.
Just recently i had a lump in my neck. Having recently lost my husband at the age of 44 to oral cancer i was absolutely terrified and i spent hours trawling the internet.Before long i didnt know if i had Oral Cancer,lung cancer,ovarian cancer or stomach cancer all of which can cause an enlarged lymph node just where mine was.As it turned out i had an inflamed ligament!!!

Moral of the story Derek the mind is a also a very powerful tool,and It strikes me that for too many years yours has been focussed on the possibility of a serious illness,when really sweetheart you could just as easily walk in front of a car any day of the week and really have something to worry about.
The future will be what it will be no matter how much you read about and worry about it,and you cant or shouldnt waste yours getting wound up about your health.

Try to get some help Derek.Counselling is a great thing ,and it sounds to me you have a lot to get off your chest.who knows you might find it helps.

If you dont fancy that ,i am a good listener and if you want to e-mail me any or every day,feel free,i might not have the answers but you might feel better getting it off your chest.

stay with us and let us walk you through the next few weks,it is a great place to be when you need friends.

love liz

hi all, thanks for the responses,

thanks for the in depth reply cookey

regarding the first issue about the early stages of cancer bit.
i was assessed over a 3 year period where they took 2 biopsys and deemed me to be clear to go after the 3 year watch.
i think that by early stages of cancer the doctor must have meant leukoplakia, as i said they were very vauge with me and descriptions, i knew nothing back then,

also sorry bout the confusion with the anti biotics, i was prescribed a 10 day course which worked, but after 2 weeks or so i wasnt sure whether the sore throat feeling has came back when i swallow or whether my mind is playing tricks on me as im so worked up.

as for being off my work i can understand where you are coming from and wish i was back at work, i am on medication which deem it impossible for me to work with machinary at the moment but am thinking of coming off the tablets and getting back as i really need the money at this time of the year as my daughter has a new christmas list every week !!

i found it impossible to concentrate at my work anyhow when i was there due to this being on my mind all day every day so i was a hazzard to myself or worse someone else.

i was back at doctors today who has put me on anti depressants and has arranged for me to see someone about anxiety management and told me to refrain from my work up until my initial hospital appointment ( 4 weeks away ), so no doubt the worries and anxiety will get worse leading up to this.

this is why i feel so helpless and such a fool, i havnt been diagnosed with anything and dentists seemed not too concerned tho i have got myself self diagnosed and in a hell of a state for maybe no reason, and theres all you people in here who have been through it or look after someone who has been through it and all seem so strong and positive, i admire you all so much though still cant help feeling like crying when i read some of the stories in here.

thanks for all the replies, you make me feel so much better

derek

Derek,

Do not feel alone. I do not know what I have yet (I hopefully find out today) and I am a basket case. You have to work through it. The support on here helps. The worst feeling is being alone. When you are here, you are not alone.

My mind was running in high gear thinking about all the things that could be wrong. I started thinking who will help my wife with the kids? Will my employer understand and let me take leave without losing my job? Will insurance pay for this? The questions are endless. YIKES! I started feeling aches and pains all over my body. The mind is a powerful organ.

Try to keep positive. I know I am trying hard to keep it positive.

well tomorrow the 3rd is nearly here and im so nervous its unbelievable. will have to go through all the biopsy scenario again 3 years on from the first scenario.

i have got myself so worked up and scared its beginning to do my head in, i also have my mum extremely worried.

dont reckon they will do anything tomorrow as its for the initial consultation, but ive tried to stay positive but it is so so hard and i dont know if ive done the right thing by scouring the internet and looking at all the worst case scenarios and graphic pictures.

i hope all goes o.k and i can put this all behind me and get on with life and enjoy my times with my daughter.

i have worried about this for so long now ( 4 months straight) that i dont know whether the pain on the right hand side of my throat is in my mind or the sensitivity on the white patch is in my mind or real.

i will just need to go and let the experts decide, but im so scared to be going through all this again.

i can safely say this, if all turns out o.k i will NEVER touch another drink in my life never mind smoking, ive got myself so worked up.

i wish all on this site the very best , your stories have really made me think about things and i will be a new man if i manage to get through this repeat scenario without the dreaded outcome taking place.

thanks

Derek

Derek,

Good luck and I hope everything goes well for you tomorrow.

Please keep us posted.

Joy