Hi there,

My background - I am 30, female, Irish, but living in Luxembourg since 2001. I had tongue cancer last year.

My treatment story:
In Jan 06 I had a small cancer on the left side of the tongue and had 1/3 of the tongue removed, plus lots of lymph nodes from both sides of the neck which luckily turned out to be negative. I had the surgery here in Luxembourg as the facilities are great, medical care is heavily subsidised by the state and I didn't have any private health insurance (I do now!)

After some worrying results from follow up checks I was advised to have brachytherapy (radioactive implants in the tongue), which I had for a week in France in April 06. Apart from the nasty initial reaction and recovery period (2 months), all was well and I went back to work.

I then developed another ulcer in the same place in November 06. Luckily (!!!) it was only a normal ulcer that couldn't heal itself, so now I am having HBO treatment (hyperbaric oxygen treatment). I am at session 30 of 50. I can see some improvement already, and am very pleased to have a treatment that doesn't make me feel ill.

So, my questions:
Are there any other members in their 20s or 30s?
Is there anyone from Ireland?
Is there anyone having treatment outside their native country?

Redser

Hi Redser, sounds like we have very similar stories! I was diagnosed with SCC of left lateral side of my tongnue 18 months ago, at the age of 22. Had reconstruction and resection of the left side of my neck, nodes came up negative
Have so far escaped radiation and have just graduated from 6 weekly to 3 monthly checkups!
I'm so relieved to have found someone else so young with a similar story, it still freaks me out going to Head and Neck clinic and seeing a room full of old people!
All the best,
Lozza

Hey Lozza,

Nice to hear from you too. Glad to hear you didn't have to have the radiation, its quite nasty.

It does make me feel a little out of place when all the other patients I see are a lot more advanced in years. Like I have become one of them and am old before my time. I thought it would be decades before I would have any kind of serious illness, if ever.

I worry about the effect on my career, for example I was out of work for 8 months last year and all of this year so far. I am not so senior that I cannot be replaced easily enough, if my company decided I had been gone for too long. Are you working or studying at the moment? If so, how have you managed with all the time off?

On the bright side, this illness has given me the chance to really appreciate what I have, and not take things for granted or be worrying about small stuff (most of the time!).

What are your thoughts?

Redser

Hi All

I was diagnosed with cancer age 21 i came out of hospital on my 22nd bday after the removal of 3/4 of my soft palate (roof of my mouth was replaced with tissue from my hip.

The cancer has enabled me to think about what is important more clearly and your right you can not take anything for granted
I hope that we can share some experiences of our young lives after mouth cancer

Mel x

Hello Redser...
I was diagnosed last May with stage IIb Nasopharayngeal Carcinoma and had 6 cycle of high dose chemo followed by 6 weeks of R.T.
I was 22 (now 23)
And yep, i too was the odd on out in the waiting room!
I worked through my chemo with 1 week off in 3. But R.T. has had me off work since November.
I'm aiming to get back in a month. Despite the chronic nerve damage from chemo!
Day time telly is officialy driving me mad! *lol
Great to hear so far so good!
Michelle

Hi Redser-

I'm 33 and recently was diagnosed with tongue cancer. I'm American but lived in Ireland for 2years 98 and 99 I too while not in my 20's feel very young to have this disease. I smoked breifly in college but really wouldn't consider myself a former smoker per se. WHo knows how I go this disease - just bad luck I guess.

March 2nd I had a total glossectomy and reconstructive tongue creaed from my forearm and groing tissue. The surgery is considered pretty extreme but due to the location of my tumor they couldn't save my tongue unfortunately. I'm back home from the hospital and I'm preogressing nicely. My speech is very garbled but my hsband can understand me and my docotor's and speech pathologist all say a prothetic will help with most letters and that eventually I'll be able to eat most things. It is just going to take lots of time, patience and practice.

I still have to get through rdiation adn chemo over the next 2 months too which I'm not excited about.

I am very scared for the future and can't imagine how I'll relearn to eat and speak at socially functional levels. The Drs. thought that the surgery was absolutely nexccesary for a cure or they wouldn't have done it. What is done is done- I am happy that I will have a chance to live and and to have a high chance of living disease free too. I will work my hardest to regain most of what I've lost in speach/eating/drinking. It isn't easy to accept this new existance that is for sure.

Interesting to hear of all of your different treatments. Hope that you don't have t have much more and that the disease goes away for you!

cheers Kate

Welcome Kate!
You'll find this site really helpful.
Feel free to post any questions or worries. The people on this site really do help and support.
Good luck with the treatment to come!
Michelle