Hi Dave, thanks for sharing your story and it sounds like you had a brilliant attitude to fight this horrible desease.

I have had a mouth ulcer for a few months and got concerned about it and went to see my doctor who referred me to hospital for biopsy. Today I got to know that it is a tongue scc (Squamous cell carcinoma) or tongue cancer in other words.

I am going through other screen tests at the moment and will have to go my way through all the treatment to survive.

It is 8 months since your last post. I wonder how you are doing now?

Cheers

Max

Hi there max... if 1987 is your birth year you are terribly young! There are a few of you here unfortunately. I'll answer for dave as he's been invisible for a bit, but he's doing well as far as I know. New girlfriend, back in school, and working to help make people aware of oral cancer..

Hopefully they move quickly with you. And throw the book at you first time out. It's the best way to get rid of the cancer for good. Best of luck and introduce yourself to the rest of the group there is a lot of valuable experience her. take care.

Max I have put your post along with Cheryl's reply over on its own thread. This way you will get your own responses. Let me know if you need help navigating the forum.

Welcome to OCF! Yes you are young to be going thru this! It will work to your advantage too as you should be stronger and heal faster than someone older. Im very sorry you are going thru this!!!! My son is just a little younger than you are so it hits home seeing someone in his age group diagnosed.

We will help get you thru this with info and support. OCF is made up of many knowledgeable survivors and caregivers who know things the doctors dont. We have lived it and know all the ins and out of all kinds of things and will help pass this along to you.

At this time focus on eating everything you can. Eat all your favorites and dont worry about gaining weight. When you go thru treatments your sense of taste will change and swallowing may be difficult so eat now.

Best wishes!!!

Hello Cheryld and ChristineB,

Thanks for your quick responses and moving my post to this new thread.

Yes I am quite young (25) to find out that I have this horrible desease but I am ready to fight it all the way.

I live in UK and am doing a PhD in Engineering at the University of Cambridge.

I don't smoke and drink only socially. I am not aware of any cancers in my family and don't know where I got it from. In or around July, I noticed I had a tongue ulcer that was very painful at the beginning and I felt some discomfort in my mouth for a while, then the ulcer pain and mouth discomfort disappeared but the ulcer was still there. I surfed the web to find out what it could be and potentially it seemed to be an early stage of mouth cancer given all these symptoms.

I went to my General Practinioner who sent me to hospital for a biopsy which turned out to be a tumour. They say it is an early stage and it's good that it has been caught early. The doctor examined my neck and said it was 'absolutely fine'.

Possibly I have not realised all seriousness of this yet as I try not to think of it too much for now and rely on my knowledge that it's an early stage and it curable. However it's freaking me out that I will have to lose probably part of my tongue and there are all other post-treatment issues...

I have done CT today and will have MRIS tomorrow.

I haven't told my parents yet as they live in a different country and I don't want to make them worry before I finish all screen tests and know the date of surgery.

I will take Christine's advice and will eat anything what I like before the treatment starts.

Thank you all,

Max

Max, you will need help to get thru this so please dont delay too much with discussing this with your parents. I know if it were my son I would want to know and help him.

Anyone who offers their assistance to you, write down their name and number and tell them when the time comes you will let them know what they can do to help you.

Seek out a second opinion at a top notch cancer center. This is very important! You want to go to the biggest facility that has the best reputation for treating oral cancers. I think there is a link on the main pages for world wide cancer centers. I will try to find it for you.

I know a student who is over at Oxford for the next 3 months. her mother was a much loved member of OCF but sadly she passed away after her 3rd round of oral cancer. What country are you originally from?

Here is a link for world wide hospitals, not sure if these are specialized cancer centers or not. But maybe it will be helpful.
Worldwide Hospitals

Max,

I totally understand. I too was just diagnosed and my family is far away, and I can sympathize. I waited myself to tell them, knowing they would worry, especially since they can't see me to know I am carrying on business as usual. I waited until everything was confirmed before I told them, but news like this spreads fast, and the last thing you want is for them to hear about it from a well meaning friend passing on their support.

My parents were upset that I hadn't told them earlier, so it's a bit of a catch 22. I would tell them sooner rather than later, as they will want to support you. They will always worry (especially with you so far away) regardless of whether you are sick or healthy.

Best wishes to you, and if you need to talk, I'm a few steps ahead of you (I've had all my scans and my surgery is about 4 weeks away), but in the same boat.

Tina

Max - hopefully they will move quickly and agressively with you. Good luck on the MRIs - etc... And take care.

Hi Christine, I will definitely tell my parents soon before this news spreads. I haven't told anyone yet apart from you guys on this site who have this experience but will inform my friends and relatives... I was diagnosed with it only yesterday and want to do a bit of research about it before telling my relatives.

I am a Lithuanian citizen but have lived in UK for many years and am a permanent resident here, so will probably look for treatment in this country. However, I can opt for another country if they can provide better treatment and the cost is ok. I think it is the key question now where to undertake this treatment. I would like to keep as much of my tongue as possible.

It seems there are modern techniques in Israel to treat tongue cancer. Has anyone heard or has any experience with focused ulstrasound, thermocoagulation, laser surgery, gamma knife? Or are these techniques conventional that can be expected to be used in any surgery? Also, it seems there are clinics that can replace the tongue after surgery. Has anyone had any experience of getting a new tongue/part of tongue? I can't even imagine though how much it will cost if it would be a private clinic...

Tina, where are you going to have your surgery? In Canada?

Cheryl, I hope so too... It all is so horrible...

Thanks

Max

Exactly where on your tongue is the tumor (side or lateral, base, front)? Replacing part of the tongue is called a flap. Many members here have gone thru this. Yes, a new tongue can be made but it doesnt entirely replace what is taken away. Thats something you will learn, surgeons always want to operate while radiation docs want to give radiation. Once tissue is removed it cant be put back on, only a part from another area can be transplanted there which wont work exactly the same.

This site is the very best available for info about oral cancer. It has up to date factual medical info and is certified to be correct. Many times websites are not checked and wrong info is very common when it comes to medical issues. There are many pages on the main OCF site. Just click on where it says Oral Cancer Foundation in blue up towards to top left. There you will find tons of info about treatment protocols which will help you decide what options will be successful while maintaining as much of your tongue as possible. You will want to hit this hard the first time so hopefully you dont ever need to go thru this again. There are also many places which have false claims of cures which are bogus and are only money making businesses which pretend to care for patients while robbing them blind. Please be cautious when selecting 'new treatment types'. The only thing that really works is surgery to remove the tumor and radiation with or without chemo. Chemo alone wont eliminate the cancer.

So much to think about right now. Please stick around and we will help get you thru this. Right now just keep eating everything in sight

Hi Christine, my tumour is on the left side. You can probably see it if I stick my tongue out all the way or if I wanted to show the left side of my tongue to someone then it will be visible in my mouth.

I appreciate that nothing will replace my original tongue but I will learn more about it. Let's see first what docs will tell me and how big is the tumour. It looks like give or take 1.5-2 cm. But it's only how it looks like, i don't know how deep it is.

Thanks for telling me about 'new treatment types'. They do advertise some different types of treatment but I don't know anything about them. All I can see is that national health system (NHS) says that tongue cancer can be treated with surgery + radiotherapy. And I think it's better to rely on people who have such experience, so I am glad that I have found this website given my problem.

My next appontment is in one week on 3 Oct. It seems I have done all tests (CT, MRIs, X-Ray and something else probably that I am unable to recall or maybe not). So I suppose they will suggest me next time what treatment I will require or possibly there will be more tests?

I went to Marks and Spencer today to buy some nice and tasty food and was almost crying that I can start counting my days