Hi mic

Just seen your post as I have been away for a little while.

I had leukoplakia (pre-cancerous cells) diagnosed on my tongue in 2004. Unfortunately in my case it did develop into cancer last summer. I assume that you are being regularly monitored and this is the one good thing because if anything does develop they will find it quickly when it is going to be much easier to treat, which is what happened to me. From my own experience I would say that if anything becomes sore in your mouth get it looked at straightaway!

From my reading on the topic I believe that the chances of leukoplakia developing into cancer are not that high. The only advice they seem to give is not to smoke, not to drink and to eat a diet high in fruit and veg. Well, I did all that...

I think the only thing to do is be vigilant, but try not to let the worry take over - easy to say, I know, but difficult to do. But there is every chance that you will be OK.

All the best

Gwyn

THANK YOU GWYN
i really didnt get told what the PRE- cancers were and looking on the net i got the impression the medical services didn't believe in them,i was never even told of LEUKOPLAKIA or anything like that.
I have trouble with alcohol and depression and other ailments too so ongoing problems are common.
when you say be vigilant,thats hard too,not to go to the docs for every little thing,as you say,not every case develops but having the knowledge that it COULD be you is a mental drawback.
I'm sorry that your's did develop and know it must be hard but thank you for replying and i wish you all the best for a full recovery.
maybe i blanked out any advice from the medical side,but i really don't think i was offered any.

Hi mic

I think you are probably right and you weren't actually offered any advice. When I remember back to 2004 I was told very little about leukoplakia when I was diagnosed. I had a biopsy in 2004 and felt hugely relieved when I was told that there was no cancer or any abnormal cells and didn't really understand why they continued to monitor me. When it became sore last year I wasn't sure if I should be worried or not, because I didn't understand enough about leukoplakia. I do agree that there is a lack of information given to patients - what I did find out I learned from the web. But I didn't find this MCF site until after my operation - it would have been so useful to me if I had found it earlier.

I am sorry that you are having all these difficulties. Are you receiving any professional help? I say this because I am a Psychologist myself and know it can be helpful, but very hard to obtain.

Thank you for your good wishes. Fingers crossed I am doing well so far.

All the best

Gwyn

thanks Gwyn
i have had help with the other problems and it's an ongoing thing too.
My art practice helps no end too,it's probably the best therapy ever.
all the best to you too
Mic

Hi mic

Not been posting much for a while, but back on the computer now. I have been wondering - what sort of art do you do?

Gwyn

Hi Gwyn
At the minute i'm into all-sorts,but it started with a two hour a week course which led to me doing a foundation course last year and i was hooked,i was concentrating on paintings,abstract was the way i was going,but iv'e done portrait and landscapes.
then i applied for a degree course at university(still seems strange to say it) and i got into Salford on a Viual arts degree.
so far iv'e tried loads of things,film,drawing with stitch,metal,wood,and now iv'e turned to sculpture (they encourage you to try new things in the first year to find your niche)i tried one in stone and loved it,now i'm using plaster in blocks and sculpting into them,i'm loving it as you can probably tell lol.
hopefully to be able to do something i love for a living is my goal again.
it's also given me a huge boost in confidence to meet others there too with similar problems,not just mature students either.

Hi Mic,
Mature students are the way to go, we have the experience of life to put it into study!
Have you a digital camera or some way you could show us some of your work?
All of us here like to share success. Don't be modest, show us some.
SusieR x

Hi SusieR
Iv'e just spent ages trying to find a way to upload any photo's and it's all disabled apart from the community album,iv'e no idea how to send pics to it .
My facebook page is at m.keelan1@ntlworld.com if your'e not on facebook then just email me and i will try and send you a few examples,,
technology is not my strong point so bear with me :-)
Mic

Hello Mic

You could:

• Join and upload your images to a website like Image Shack
• 
  Then use the image link function (the picture image) from the message menu

to show us your photos. Hope that helps.

Best wishes
Vinod

hi mic
welcome
all i can say is carry on being vigilent with regards to the leukoplakia i was diagnosed in 2000 with leukoplakia and after 6 biopsies it developed into oral dysplasia a pre cancer and last year in july 08 i had major surgery and neck dissection for cancer of the tongue all these developements have taken 9 years in total the cancer has reoccured from 07 but at the moment i am 8 months on recovery is slow but thank god i am alive and have wonderful surgeon who checks me every month and without this forum for advice empathy and support i would have felt so alone with head and neck cancer because there is not much support out there .to sum it all up though it isnt cancer until its cancer take care
bev

Hi mic

I would very much like to see some pictures of your art. Hope you can sort it, like Dr Joshi suggests.

Congratulations on getting a university place. Hope you are destined for great things!.

Regards

Gwyn

For Bev
Thanks for the mssg,sorry that yours after nine years of unsure times it developed,that's the point i was asking?
there's no advice publicly about the possibillities,and new diagnosees have NO idea about what CAN happen and what the odds are about it happening,good luck in treatment AND you made the same point really having developed it.
that doesn't mean that next year i will.
even though i had my teeth removed .
it seems to be a random cancer and any form of sore or cut in the mouth cannot be judged until something developes.
and to me every other week there is something,it's a confusing thing,not wanting sympathy,not getting it when needed by people who matter, and actually needing it when it doesn't matter ,,,,,,,, you must have felt that.if strength of mind is there already, how do you combat the reality of the situation.
battling other things like alcoholism and addictions just throws spanners everywhere.
self inflicted but personal to the patient, just stop is something iv'e come accross a lot.
i stopped smoking the day of leukoplakia,still struggling with the alcohol,though i'm eating a shitload healthier and OFTEN.
being alive is a question iv'e asked a lot before this started so if you or any other advisors have advice ,my ears are open.
at times in the PAST iv'e not enjoyed or even liked life.
i cherish it now but maybe not enough to others liking.
each to their own ,,,,,,,,,,,,,,,,,
even though it may shorten it x

Hi mic

I agree about it being random. Head and neck cancer is rare so there must be loads of people who smoke and drink and don't get it. I thought I lived a relatively healthy life - vegetarian, drank very little alcohol, gave up smoking in 1979, but my leokoplakia still developed into cancer. One of the doctors I saw when I was diagnosed said that after I had had my clear biopsy in 2004 he would have discharged me (he has now become a consultant so I hope my experience has made him think more about that). Unlike you I didn't really live with uncertainty because I didn't really understand the risk. But remember that that there must be loads of people out there whose leukoplakia didn't/hasn't developed - in general on this site you will only meet the ones whose did develop. But, as I and Bev have both said,the fact that you have leukoplakia means that you do need to be vigilant and professionals (and others) should understand the effect that this awareness is having on you. I think that the psychological aspects of illness are still very much neglected in our hard=pressed NHS.

Best wishes
Gwyn

Thanks Gwyn
the mental effects of the whole situation are dominating and it would be interesting to see just how many people are going through this ,as you say,most people on here are actually cancer patients but how many read the posts and do not feel eligible to give an opinion?

Hi Mic,
I have been going through all your posts and can assure you everyone here has had cancer or have looked after cancer patients. However, not everyone is qualified to give their comments on your illness. Everyone here understands what you are going through and would love to help you. I am sure not one of us would have backed off if we were eligible to give you any kind of help or information if any of us had your problem.
Regards,
Ananth