hello
i searched on google and found this page. I'm not sure what else to say, but here's a short version of my story.

i'm 21 years old. i was diagnosed with tongue & neck cancer in late July last year (2010). i had a tumour on the left side of my tongue and cancer had also made it's way into my lymph glands. several tests & only a week and a half later, i was in hospital for surgery.(luckily!) my surgery went for about 10.5 hours, and consisted of cutting the left side of my tongue off, a graft and artery taken from my left thigh to piece together the 'new' half of my tongue. i also had my jaw broken for 'access' and a neck dissection to remove roughly 30 of my glands. i had roughly 2 months to recover from memory before i started what originally would be 6 weeks of radiation and chemotherapy (cysplatin every 2-3 weeks)..a week into treatment i discovered a lump on the other side of my neck (right), and was booked in for a ultrasound of the neck, which turned into a biopsy with a needle.this was unexpected by both myself and the doctors treating, but the cancer had spread to the right side of my neck. so i was booked in for an additional 8 weeks of treatment. so it totalled 9 weeks of daily radiation and a few more chemo's (i think 44 radiation treatments) so that was a pretty horrible time for me and my family. i missed out on getting a 'peg' because of the original 6 weeks of treatment expected, so i had the tube through my nose for weeks. as alot of you know the side affects were horrible. my treatment finished in late november, i just had my first ultrasound on my neck last week since treatment and it came back clear!my radiation doctor was very confident, but my surgeon thinks a pet scan should be done to be sure. so that's coming up. but all signs are very good at the moment. i'm not sure what else i can add to that, except i wasn't a smoker.. i had 1 cigarette previously in my entrie life in fact. and drink socially on the weekend like most people my age.
thanks for reading,
cheers,
dave

i'd be happy to chat about anything if i'm able to help. don't be afraid to ask
thanks again

Hi Dave
the G'day was a dead give away. We are in Sydney and it is my Alex who had the oral cancer. I am loosely referred to as the carer but "slave driver" is sometimes a closer description.

Welcome, there are a few Aussies around who have a wealth of experience especially with surgery. Alex was "unresectable" which basically meant the tumour could only be removed if they cut him off at the neck. As he likes living and this would intefere with beer drinking and talking we opted for a long and brutal course of chemotherapy (12 weeks) and then chemoradiation which you already know about. Standard seems to be 7 weeks so your 44 treatments sounds like a week more than most people could stand. Hope you are feeling better now and if you have any issues that you need help with, please don't hesitate to ask. You are very young and will bounce back a lot faster than us "old farts" who, 6 months after treatment finished are only jusst getting back on track.

It might be worthwhile asking your oncologist to test your tumour for HPV (human papilloma virus) as it is often the culprit in young non smokers. Also you should have a PET in the future but it is normal and preferable to wait until you are completely healed before doing it. About 12 weeks after treatment seems to be a fair thing as the swelling from radiation and surgery should have gone down by then.

Hi Dave

I am glad you found this site..just wish you never had to. But, now that you are here, you will find so much information and support from its members. Like you, I found this site by chance, hesitated for weeks before I joined and only did so when I found my cancer had returned to my neck 4 months after my initial surgery when I discovered 1 lump in my neck that turned out to be more. What a shock it was!! I couldn't believe my luck..guess the cancer was there all along because my pathology results showed many nodes involved. It is through this site that I regained my confidence to believe I will get well. So many people here take time and care about newbies like us even though they are battling their own war against this illness.Everyone is inspiring, encouraging and most importantly they all have a sense of humour!!

My treatment starts in a couple of weeks..I am currently recovering from a radical neck dissection (2nd time)and not looking forward to radiation and chemo but I know I have to go through with it.

Sounds like you went through a lot for someone your age. There are a few of us here who are from Oz which is great!! I have made friends with a few people and we chat through FB or the phone!

I wish you all the best with your recovery Dave...keep healthy and look after yourself.

Liza

Hi Dave, from one of many Aussies on here. So glad you found this site, it's a wealth of information and the people here are the best. When my husband Steve was diagnosed we were living in Townsville. Got to go to bris vegas for the PET scan. Great hospital there. We are now living just north of Sydney. It sounds like you've been through alot. When Steve was diagnosed the cancer was too extensive so the doctor's and us opted not to do surgery. The doctor's (both Townsville and Newcastle) didn't expect a cure but hoped 35 rads and 3 x cisplatin would give us a miracle. We on the other hand didn't listen to their stats and probable outcome and 18 Months later Steve is still showing as all clear.

Make sure you come here often for any reason at all. It's a tough road dealing with oral cancer treatment and recovery. The guys here will help in whatever way they can and offer you great advice if needed.

Good to see another Aussie here. Loved the G'day. It was a dead giveaway to where you were from lol. There seems to be quite a few of us now. All the best Dave

Wendy

hey klo
i made it through the 44 treatments. don't ask me how! i loosely refer to it as 'hell'. and i can't describe it any better than that. the last 3 weeks felt like 3 years. i lived every second of each day. i wasn't expected to last the treatment, but it's what i needed. and i'm here to tell the story, so i can't complain

sorry to hear of alex. my carer or slave driver as you rightfully called it was my mum in my situation. and alot of things played their part in getting me where i am today. but i really don't think i'd be here if not for her help. if i didn't sleep, she didn't sleep. i owe her alot, but the best thanks i can give is getting better ! i have recovered well in that i'm back working outdoors.. but i've been struggling physically, but i have done better than i expected.

i'll look into the HPV. is their any benefit to finding out the cause though?

thanks for your reply. all the best,
dave

with regard to finding out whether you have HPV - yes and no ...

From a long term perspective? Yes. Right now the difference in treatment between HPV+ve and HPV-ve tumours is zero. However, down the track this may change when we understand the differences better. Then this information may be important for others (or even yourself) in years to come.

For your situation right now? No. You are through treatment, you don't want to worry about it anymore. Whether or not you are HPV +ve makes no difference to whatever tests and rehabilitation is before you.

It is thought that HPV+ve tumours respond better to treatment than HPV-ve ones. Because of this, there is some speculation that treatment may not need to be as severe for positive tumours.

There are many threads about HPV on this site and you can learn alot just trolling through the posts.

hey liza,
cheers and thankyou for the reply.
i'm sorry to hear that you're going through the treatment and the surgery again. i know the possibility of it's return is a scary thought for me, but i'm sure you'll be successful in your fight. you were strong enough the first time, so with a strong mind, you can do it again.i've got my fingers crossed for you

it did come as a shock of course, but at the time i saw it as a challenge. i guess youth, and how quick it happened deprived me of the fear everyone around me was feeling. i was in a good place mentally. ready for battle as i'm sure you are/will be! and i had much needed support to help me through it.

i only found this tonight by chance, and it's comforting to have that support group from those who have 'been there, done that'. i wouldn't wish any of it on my worst enemy. but like you say, it's very inspiring to see how strong some people are,especially yourself!

hopefully i can build some bonds and frienships as well.

thankyou very much liza,
and i wish you all the best most definitely as well on your road to recovery. you deserve it.thankyou for your kind words

all the best mate,
dave

hey wendy, how are you

i'd met a few people from rural areas of queensland that came to Brissy (RBH) for treatment. my trip was an hour + dependent on traffic, so it was a rough drive in and back everyday when i was sick. but i couldn't imagine having to travel all that way and stay somewhere for the treatment. even in the worst of my treatment i was in my own bed, around family and mates. so well done to you guys for finding a way to manage!
that's unbelieveable news, congratulations
i'll be definitely popping on here on the occasion. i didn't know what to expect tonight, and it's already been worth it. i guess i felt pretty 'isolated'. maybe not the best word to describe it, but all i've heard from doctors is that i'm a rare case at my age, and i never had the chance to talk to other's that have gone through it before.

thankyou very much for your reply. and again, congratulations!,
all the best for you guys as well.
cheers,
dave

hey again klo, and thanks for replying.
I do see your point. future developments may help me in some form or another. so finding out the possible cause may prove a smart move. to be honest, i hadn't heard of HPV before tonight.. so i was pretty unfamiliar with it. i've read a small amount now. and it obviously looks a possibility.

i guess this has all happened so quick and until last week, i was still in limbo between my treatment and scan. so looking forward though, i'll bring it up with my surgeon at my next appointment coming up.

thanks for taking the time to reply.
cheers,
dave

Hey Dave, sorry I didn't mean we had the treatment at RBH. Just the pet scan. But alot of people from rural qld do travel there to have treatment. Must be very hard on them. Just having to fly down and back for that one day, being away from all that was familiar and comfortable was bad enough. We couldn't imagine doing it for 6 wks. That's why we decided to move to Newcastle area NSW as all of our family are here. An hour drive away from the hospital also and Steve got to be in the comfort of his own home each day. I would imagine that would make a huge difference.

Sounds like your mum is a legend. I'm really glad you have her for support. Keep coming here and even if your mum wants to as well it will help. There's a section for carer's and it might help your mum to understand some things. These guys here were my rock when Steve went through treatment. Between these guys and my mum I was able to keep going. Makes a huge difference.

ohk. sorry i must have read it wrong.

it definitely must help, being in familiar surrounds with people readily available. i was considering the idea of staying in the hospital if i needed treatment again. part of the daily stress was getting in and back everyday. but i guess i wouldn't know until i tried.. being in the hospital even longer each day would be difficult as well.
yeah, she (mum) was unbelieveable. not sure where i'd be if not for her, plus the rest of my family and mates. i'll talk to her about this site tomorrow. i think she'll enjoy having a look around like you said.

take it easy, i'm really tired so i'm off to bed.
i'll check back tomorrow
cheers,
dave

Chances are very slim that your cancer slides will test positive for HPV as it almost always targets the BOT or tonsils. Unfortunately you probably fall into a fairly new group of OC patients that we saw presenting themselves about 3 years ago and that would be people that were young, non smokers, casual drinkers and their cancers begin in the forward part of the tongue, as opposed to the BOT, but are HPV- and their cancers act as aggressively as tobacco related SCC.

No worries Dave! I'ts nice to have the support of people who have or are going through the same illness inspite of where in the mouth/neck the cancer strikes. And thank you for your well wishes..I intend to beat this sucker even though I know some days I will not want to go to get the treatment as I live 75 kms south of Perth which means I have to travel that distance and back for 5 days a weeks x 7 weeks! But, I will finish it!!

And yes, your mum does sound like a legend..this site is wonderful for carers like her. I believe their job is a lot harder than the patients..so here's cheers to all the care givers!

Take care and keep in touch.

Liza

Welcome Dave
I am truly amazed at your positive spirit with all you have been through. I think your attitude will carry you to a much quicker recovery than your Dr's expect! My husband also had a feeding tube through his nose for the first month and he hated it too! It actually fell out one day on it's own, very gross looking. So he was happy to get a PEG when the time came to switch. He is still using a PEG as he is having a hard time moving his tongue to control food.

We also live an hour from the closest TX site and I could not imagine driving it each day, that had to be hard. Luckily in the USA we have places called HOPE LODGE where people in treatment can stay for free and also an added bonus is you are living with others going through simular treatments. (You have your own room but share living & kitchen rooms.) In our case there were 6-7 others with tongue cancer so it was a real community of support for my husband and for me his caregiver. I feel it was one of the best decision we made to pack up and move there even though we were far from family and friends. Wondered it you have them in Australia?

Take care. Karen

Hi Dave, welcome to OCF! Its always nice to have survivors join. I saw the 1989 and hoped it wasnt for your age. I have a son born the same year. You are so young to have gone thru this. But that also has helped you to get thru the brutal treatments and surgeries a little easier than someone who is elderly (or even my age LOL). Congrats on the clear scan! As you found out, there are several members from Australia here.

Best wishes with your continued recovery!

Dave, welcome from California. You're a very tough and brave guy and have absolutely been through hell and come out the other end. I drove myself about 40 minutes to 31 rad treatments and barely made it, so in my book you're already a legend!

I'll keep my positive thoughts flowing across the ocean to you.

David 2

PS the good news: there are a lot of us Davids here at OCF; the name alone confers luck!

@davidcpa
thanks mate,
i think you're probably right. my 'ulcer' did start close to the tip of my tongue. and my cancer was certainly acting aggressively. i'll talk to my surgeon when i see him next, but i'm confident he's already aware of the results.
cheers,
dave

@ liza
no worries at all. i know you'll find a way to work through the toughest days of treatment. and it will be a huge achievement. you're very strong, to have picked yourself up for a 2nd round.

all the best

i agree with every word referring to the carers. such a tough job. beyond their wildest expectations i'm sure.an emotiional rollercoaster, that's for sure..

thanks again. and good luck! you deserve it.
dave

@karenj
cheers karen! you've been proven right. so far, i've gone beyond doctor's expectations at each visit, and hopefully i can keep that trend going..
the feeding tube is very uncomfortable isn't it! my doc's decided against the 'peg' because of my original 6 week treatment plan. but i'd had chemo, treatment, etc when i got the extra 3 weeks added on. i needed a peg, but got by (just) on the tube. they couldn't add the peg once i'd started treatment apparently. i haven't even seen what a peg looks like or how it works.sorry to hear he's using the peg still to eat. hopefully he strengthens his movement of his tongue soon and he can slowly work up to soft foods again.i consider myself lucky to eating the foods i am now.

the drives were pretty horrible, but it was my mum as my driver each day. she was their throghout everything. i couldn't have gotten their myself. not a chance.. we were offered partly paid hotel accomodation closer by, but at the time we decided to be home each day/night as the best move. if i have to go through treatment again, i'll seriously consider staying nearby though ! i didn't really meet anyone that i know of who also had tongue cancer. and your little community sounded almost ideal for going through treatment.


thanks for your reply and insight. much appreciated
cheers,
dave

@ChristineB
thankyou very much. i've had so many doctors tell me the same thing about being so young. i even once had a guy almost insist that i was a chain smoker, and smoked drugs in my youth. i told him, i'd only ever had one cigarette. i'm not even sure he believed me! luckily, he wasn't playing any part in my treatment. from memory, he was a part of the group giving me my ultrasound during treatment.

you make a good point. i was 21, healthy, active and i found it incredibly hard. by far the toughest thing in my life. i couldn't compare it to anything. but my physical recovery has always been faster than expected and i've got my youth to thank for that.

thankyou very much. the scan results were obviously a huge relief for myself, and all of my 'support crew'. it's good to see some other's on here from australia, but also people on the other side of the world as well. i'm glad i found this site.

cheers christine,
dave

@David2

cheers mate. gee california! i'm hopeing to go their on holidays in the next couple of years, if all goes well. Europe and the US are on my list. i'd just gotten home from my first overseas trip (south africa soccer/football world cup) when i was diagnosed. so i'd just gotten the bug for travel :)now, all i need is money haha !

i can't believe you drove yourself to all those treatments. i know i was absolutely no chance of achieving that. that's incredible.

thankyou very much mate. i send the same best wishes back to you.i have noticed a few david's getting around!good to see
all the best,
dave

Hi Dave,
It�s a welcome from another fellow Aussie.
My first thought when I was reading some of these posts on my phone earlier this morning was ;
1. Not another David and
2.You have been through so much these last few months.

I particularly liked your response in one of your posts;

[quote=Dave1989]i only found this tonight by chance, and it's comforting to have that support group from those who have 'been there, done that'. i wouldn't wish any of it on my worst enemy. but like you say, it's very inspiring to see how strong some people are,especially yourself!

hopefully i can build some bonds and frienships as well. [/quote]

It is a good thing you found us as this is the best place for OC patients, carers, survivors etc and you will find many new friends here.

When you get a chance just add a signature so people here can see that summary every time you post and this helps with replies.
Got to MY STUFF, PROFILE, scroll right down to the bottom and add it where you see
Signature: (up to 300 characters) You may use UBBCode in your signature.
You can cut and paste mine or someone elses and edit it to fit your profile if you like.

Love and best wishes and may you stay cancer free!
Gabriele

@ Gabe
thanks mate,

i'll try and get my signature suitably sorted today. i'm unsure of the correct medical terminology for some of it.. but at the very least i'll put up a more 'simplified' temporary version, and i'll find some of the doctor forms with the correct terms on there.

it's pretty unusual to have so many david's. i didn't think that would be what i had in common with so many people here

is their many other's in my age bracket under similar circumstances on this site? of course, i hope their isn't.. but i've been told so often that i'm a rare case for my age. but in saying that, i know thier must be alot of other's out there also.

thanks again, and all the best to you as well. cheers,
dave

edit- i just added a signature. hopefully it's reasonably clear for those reading. cheers !

A few years ago we had a young girl from the UK who was just 18. Ive met a guy who was only 17 when he was diagnosed. So now there are 3 people Ive seen get this before they turned 21. Oral cancer is not one of the big 3 cancers and unfortunately it isnt known about that much. Im sure there are other young people who have had this but it is pretty rare. Being so young, you can recover and move on to have a good long life!!! The person I met who was only 17 when he got cancer is currently a 16 year survivor.

You will go on to do great things with your long life! Best wishes for continued good health.

Signature looks good Dave.
Just checking as I remembered there was another David from Brisbane.
Search David P in top right search bar..go
He only posted 4 times (which you can read) but I am sure it would be OK if you wanted to send him a message.
Subject was hello to all in Introduce Yourself
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=124038&page=1

Hi Dave

I am so sorry that you have been through so much and at such a young age. But it is very positive that your latest ultrasound is clear. Have the PET scan if your doc recommends it.

It is good that you found this site. You will receive support here as you recover. Ask many questions, others will have been there. Have you browsed the main section of this site - it is full of useful info.

My cancer was very different to yours, tongue not involved, but I had extensive spread to the lymph system. Soon I will celebrate 7 years cancer-free since the end of treatment. I certainly wish you well for your complete recovery.

Best wishes from Helen

@Christine,
thanks mate. thanks for letting me know about the other young people diagnosed. it's good to hear that there's a real possibility of success as well. i can only hope the worst is over for me, and like you say i can move on and live a happy life
cheers.

@ Gabe,
thanks. i'll take a look at his profile. what are the odds of their being so many david's..?unbelieveable.cheers mate

@AussieH,
thanks mate, and i haven't had much time to search through much of the site. i will over the next week though. i'm sure there's a wealth of knowledge on here and inspiring stories to help me further.sorry to hear of your cancer, but congratulations on the 7 years of freedom since. that's great news. well done!

thanks again everybody, cheers.
dave

I have been saying this for years and people just don't listen to me when I tell them that the name "David" is a cause of OC! We are cursed from inception! lol

Dave - i am sorry you have to be here but it sounds like you are doing fantastic - no one your age should ever have to go through this ( no one should actually) but particularly someone so young it's scary - as a parent i would much rather have to face this than have my child deal with it. Your mom sounds amazing, and I am glad you are doing so well. It's inspiring - please keep us updated on how you are doing. Many hugs and best wishes to you.

@ david cpa,
the statistics would be hard to argue with haha

@Cheryld,
you're right, it's not fair to anyone, of any age group to go through something like this. I think my mum shares your sentiments when it comes to parenting. she's said many times that she'd do anything to take my place. not that i'd let her! i have similar sentiments. i was glad it was me and not one of my 2 older brother's!
thankyou very much for the msg.
cheers !,
dave

Nah, it's just that we like typing!

d2

Hi Dave, I've been a carer to my hubby who was diagnosed 2 years ago. He has just had a clear CT & PET scan, something that wasn't expected. Hopefully he'll be around for a long time to come. You are really brave, and your mum sounds like a godsend. I am in Melbourne...yep, another Aussie, but with many friends via FB on the other side of the world. Don't know what I would do without the support on this site, and FB - most of my friends on FB are from OCF, and are all loves of my life. To you and @KLO, how do we find you on FB?

Hope you are still doing ok, lots of love being sent your way.

Jeanna

If anyone wants to join the OCF facebook list. Please write a message on that thread found under the "Friends" tab. Include both your name on here and your real name. If you have a link to make it easier to find you, please add that too and I will update the list. Only upon request will I add anyone to this list. It is very nice to be able to get to know OCF members in other ways than just as oral cancer patients and their caregivers. This site is still the very best place for all info about oral cancer. Facebook in no way takes the place of this forum.

Thanks Christine..agreed, but FB is a good place for a laugh, hug & kiss.....don't you think?

Have you had biopsies to either confirm or deny the Cancer. I might have missed that part?

hey
sorry i've been busy and not made it here to reply the past few days.
@ David2- well i can touch type reasonably well. it's no more outrageous than the name as a cause haha

@ Jeanna F- Congratulations on the clear scan for your partner. must have been a great moment for you guys ! i'm doing very well at the moment, thanks

@ChristineB- i'll have a look for that list to add my name for the fb

@ EzJim- i'm not 100% sure on what you mean. do you mean biopsies of the glands taken during surgery? if so, yes they were checked as far as i know and i think only about 3 were cancerous, and a heap were taken around them that were ok.. i've had a biopsy on a neck node on my right during treatment which was cancer.. but have since been given a clear scan from an ultrasound. nothing unusual showed up which my radiation doctor expected, which is a good sign. i'm booked for a PET to be doubly sure in the month of May i think.
hope this helps,
i've gotta go again now, to the gym actually. wish me luck haha
cheers,
dave

@

Welcome, Dave!
I think you'll-as I have and continue to-find not only a wealth of really useful info but really GREAT PEOPLE on this site. You've been through a lot, my friend and it shames me when I come here and read people's experiences to think that I actually occasionally feel sorry for myself!
Hang in there, dude! We're all rooting for ya!
Gordon

hey can i ask you a question... how many nodes did you have involved on your left and right side?

@gpk. cheers mate !

@Cheryld
hey Cheryld.
left side i think it was 3, which were taken in the surgery. 1-2 weeks into treatment i discovered a lump on my right side, and had higher doses of radiation on that part of my neck to 'kill' that cancer.
hope that helps,
cheers

It does... Thanks I had one on my left and that and 39 more were taken, in surgery but a very small node 3mm highlighted on my right in my last CT - they are adding radiation to that side just to be sure they get it they are not sure it's cancerous said it could be any number of things as they haven't done a biopsy. I am going to ask them about making sure it's strong enough. Thanks so much - hope all is well.

Hey cheryld.I had 30 taken on the left,so 3/30 were cancerous.I had a needle biopsy on the lump on my right.it was found to be cancerous but I found it early.after treatment the lump had shrinked & I could still feel a smaller lump which was just leftover scar tissue.but it played on my mind until it completely dissapeared,which from memory took about a month (roughly) after my treatment finished.all the best. Dave

I'm glad you are doing so well! Thanks for the ion - mine is o small that a needle biopsy probably wouldn't work - I'm ok with he rads ank Chemo - hoping it will get a permanent kick in the pants!

Hey Dave i had my treatment at RBH went there from CQ i just got to say that now 2yrs on its a bit of a blur so much happened in such a short amount of time 7wks rad and the 3 chemo's.I just want to which you all the best for the future you have good support and a positive attitude your already in front.



2yr survivor
throat cancer
secondaries in neck
pegin/pegout
7wks rad/3 chemo's
last pet scan all clear

hey malo5.
good to see you're doing well 2 years since your treatment! so much does happen in that short amount of time but it seems to last a lifetime during treatment. thanks for the kind words.
all the best
cheers,
dave

Hey my name is Brian and I have just stumbled across some info that I might have some type of throat cancer that was caused by an HPV strand if anyone has any info on symptoms they had who have had it. my symptoms are irregular swallow not really pain but my ear aches and now is ringing constantly any help greatly apprieciated

First time on here so not sure how it works yet

Check out HPV right here on this site. It will give you tons of info. Many of us on this site have/had a HPV+ tumor.

Can't tell by your posts but you need to be checked out by a qualified OC doctor.

hi there. So sorry to read of another fellow young person getting this, but i feel worse for you, as i had a few more years till i got mine.
My heart just sank when you said they decided against peg because of the initial 6 weeks, and because you had already started treatment.
Here...they usually suggest you get it, even with the 6 weeks. And I had mine placed the 4th week of my 6, and only had issues cuz the darn hospital staff gave me a sickness that caused me to have problems with it, but i know many, many many people that get theirs even after their treatment has started and they have never had any problems with it! So it just makes me sad that ur docs were saying that! The peg is so much better then that darn nasal tube,

I am glad you are doing so well now. The physical issues will more then likely go away with time. I still have some shoulder pains on the side of my neck dissection if i work a long day, but it's so much better then what it used to be!

Keep up the great work! I feel we were at a big advantage to get it while we are still pretty young, we heal much faster then most of our fellow older people, and for me, i appreciate so much more now, and take less for granted!

Also, I don't have ultrasounds, we mainly do PET/CT scans over here as follow up after treatment, and if anything suspiscous pops up, they will do a biopsy and sometimes use ultrasound to guide the biopsy, but usually just the PET/CTs!

Keep up the great work.

hey bethers it's nice to hear from someone around my age, but at the same time it's terrible that you went through all this as well!

looking back, it definitely would have been alot nicer to have the peg. It was pretty horrible having the nasal tube in for those weeks to say the least. but i guess the doctors have learnt from my case, and the next person who comes along will be given the peg. so some good may have come of it i hope!

I do share you're attitude on it being almost a good thing to get this while we're young. i had a shocking time in recovery after my op with the jaw split making things worse. but i still managed to get out of there in 8 days. and i'm back at fulltime work outdoors & at the gym now since i've finished treatment. so things have healed up nice and quickly in comparison to some other's i'm sure. so we're certainly lucky there!

i definitely take less for granted like you say and appreciate the little things in life. i don't even follow the date at the moment. i'm just really enjoying feeling good. so not much gets me down or angry at the moment.

i'll also be getting a pet scan in may. and from then onwards, i assume it'll be 3 monthly scans if all goes well..

anyway it's nice to hear from you. and it looks like you're travelling very well also. congratulations i hope things continue on that path!
all the best.
cheers!
dave

I couldn't imagine having the nasal one for that long. I had it for 3 weeks, and my nose and throat just got so raw from it I almost pulled it out myself, lol.

Do you have a facebook account? quite a few people from here are on there, and it's nice to place a face to the name to people you talk to on here. Plus there, you can post pics,

i know the feeling hehe.
i do have facebook. i am already a part of the ocf fb list.
i am dave tyssen, if you want to add me .
'dave' rather than david to be sure you get the right person. i think i'm the only one on there.

hey, I thought I'd check back in here since i haven't been on for a while. i've been reading here often though.

I recieved some good news on Thursday. my first PET scan (post treatment) came back clear. so that was great news!

I'm fit and healthy at the moment and my appetite has been huge since i've returned to outdoor work fulltime and gym 4-5 times a week. Sour cream is my new favourite food. you can add it to almost anything, and it's delicious. it's certainly changed the way i taste & enjoy food again which is great.

I'm hoping to re-start a university course i'd begun just before my diagnosis last July. Studying to become a Primary school teacher.

my speech has been near perfect. i sound very much the same as before my surgery, which certainly wasn't expected. and my neck scar, thigh scar, & 'jaw split' scars are all healing nicely. so things are getting back to a 'new normal' which is good. I have a lot of people to thank for that.

something i've wanted to do since i was sick, was to get a tattoo that tells a story about my experience. i'm not sure where to start though. I'm a terrible artist. my drawings now, are actually worse than when i was 4-5 years old i think but i'll think of something, or get some help to design it.

thanks for the support i've been given here so far. i've really appreciated it. i've learnt alot in my short time here and it's certainly put my mind at ease on different aspects of my experience.
I can't thanks you guys enough
cheers!
dave

Congrats Dave. Sounds better than terrific!

That's awesome I am so happy for you!

Congratulations on the clear PET scan Dave.
You are doing so well and have such a positive attitude.
So good to see you looking forward and wanting to continue your education.
I am not a fan of tattoos but I did see one of our OC family post a picture of one she had done on FB using the maroon colour that you will see on the OCF store here in the wrist bands.
I�m sure I downloaded the picture and will have a look for it.
Cheers
Gabriele

Congrats Dave - so wonderful to hear your recovery has been so speedy and you're enjoying life - along with sour cream!!

Welcome Dave, I myself just joined this site. Something my therapist has been telling me to do for a year. I read your story and I have to say I felt shame. I just got done complaining about not having the bottom left and bottom front teeth, and I than read your story and I feel like a naughty child. I thought I was young, my god your a baby with your whole life ahead of you. You sound so strong and secure with what you have been through. You humble me!!!! I wish you the best of luck and I hope we can become friends and help each other. Everyone is so nice and helpful, we have a whole new family on this site.



Misty





Msity

cheers guys !

and thanks for sending me that tattoo pic Gabe

Misty, thanks for the kind words. i found this site by accident by 'surfing' the net one night. i'm glad i did as well. it's been of great help. i'm in a better place now then i was before i joined. nothing about my experience has been easy, and moving on with life has some difficulties. but the people on here are very nice & helpful like you say! i'm very happy i found it.

cheers !
dave

Hi dave
Having had surgery and facing treatment I can't tell you how good it is reading your posts! Brilliant need on your latest scan! Your attitude to this speaks volumes and the tattoo is a great idea
Life is for living and you are so young go for it!
Jayne x

hey jayne!, thanks for your kind words.

all the best with your treatment. keep fighting! i'm sure you'll get through it. stay positive and focused on the mission.
best of luck
dave

I was asked by a few of you whether i was HPV positive. I found out recently that my tumour was in fact HPV negative. It was in the original report/diagnosis. My mother knew about it, but i guess it was so much of a blur to me at the start. It didn't really seem important at the time!

I just wanted to clear that up. I'll add it to my signature shortly..
Cheers,

dave

Dave, thanks for adding that important info! Since you are so young, I had assumed you were HPV+. As a nonsmoker it scares me knowing you are one of the growing numbers of young survivors with no risk factors.

Hi Dave - just wanted to add my congrats on how well you are doing. That is so good to hear! You mentioned getting a tattoo - My son Paul recently got a tattoo of a radiation symbol. I 'm not sure if he drew it or not, but it is a very simple one. If you are looking for ideas for a design, you can see lots of them by searching on google images at: http://www.google.com/imghp

It is a scary thought. The doctors really had no answers to why i got it. But i'm proof that no one is ammune to getting this disease.

The next step for me I think, is to try and raise awareness. Doctors and patients need to become aware that it's possible to get this disease even if they don't fit the description. So maybe next time when a young person comes in to their local doctor with a 'mouth ulcer' they won't be dismissed like I was originally. It took until the 3rd or 4th appointment before they finally acknowledged that i should have it checked/biopsied by a specialist! I'd discovered the 'ulcer' several months earlier.

I've begun writing a letter that i'm going to send in to a tv show over here called 'the 7pm project'. It's a nightly news show watched by a big audience here. They're always promoting charities and it's dissapointing to never see oral cancer given a mention anywhere. I'm aiming high i know, but it's worth a go

And thankyou very much Anne Maree :-) that's a good idea. I might be able to combine that symbol with 'the survival logo. I'm hoping for something simple,but effective. Cheers ! Dave

Dave, excellent activism! Its so important for everyone to know about oral cancer, the symptoms and about early detection. Its too bad that it is such an unknown disease. Gosh, just think of what you could have been spared if yours was diagnosed earlier. OCF has worked so hard at making oral cancer a household word.

Cheers Christine, sorry I'm late getting back to reply. Ive been busier than usual lately. I've finished the letter but I'll show my mother so she can edit & add some experiences from her side as my caregiver. I'm planning on sending some out next week. I'd love to get the word out. And yeah, so much could have been spared, & my experience would have been more pleasant if I'd been diagnosed when I had my original checkups.. It's something I can't change for myself, but I can create some hope for the next 'young' person who's unlucky enough to get the disease. Fingers crossed someone reads my letter

Dave - It's great that you are doing so much to spread the word about OCF and Oral Cancer. Send your info to as many people s you can think of that may be able to help to spread awareness. The more people involved, especially if they see who copies are sent to, the better chance there is for them to scramble to be the first to get your story! Send pics too, if you can. And let us know how it goes. Btw - Got the tattoo, yet?

David awesome in the activism - its scary how many young people it's hitting these days - people with no precursors for it I think the minute they ask you if you smoke and or drink and you reply no they automatically rule out OC because in the past it was primarily a cancer found in older people ( men mostly ) who were smokers and or heavy drinkers. Now with HPV, and the unknown factor which is what I am attributing my cancer to (which could have been could several years ago) the face of OC is changing. Good luck in you quest to enlighten the masses. You are doing amazingly well - it's so great to see. Take care and many blessings to you.

hey guys, sorry i've been away all weekend and haven't had a chance to reply any earlier. I have tomorrow and Tuesday off work so i'm looking to get myself organized and send some away!

Thanks for the advice Anne-Marie. I hadn't thought of sending photos, but I will take a few to send along with the letter. I haven't got any photos of myself after surgery though. I was a pretty scary sight, especially with the jaw split. But i have a couple during radiation that I'll post.. And i'll send a few photos of my scars, mouth, etc.

I haven't gotten the tattoo yet, but a friend of mine who's great with art has designed a sketch for me. I'm actually quite excited about the idea. It incorporates my battle with cancer along with the things that mean the most to me.. (and the things that got me through my experience.) I think it's going to turn out really well, and it'll be one to be proud of. I'm hoping to take it to the 'tattooist' this week.

Cheers Cheryld. Whether i was a smoker or not is always the first question i'm asked when i tell someone what i've had. I'm HPV negative too so there's no clear cause for me. Hopefully I can play my part in getting the word out.

Thanks for the advice. If anyone else has any ideas for me to add into my letter, please reply to me on here.. Or msg me.
Thanks again,
Cheers!
Dave

Hi Dave

How wonderful it is that you are trying to create awareness about this horrible disease. I was just talking with my dentist the other day and he said to me there is no clear explanation why this type of cancer is affecting younger people who do not fit the 'typical' OC patient profile. He also mentioned that he has seen more women who are in their late 30s/early 40s present with OC in the last few years and he was at a loss as to why this was the case. Most were HPV negative (myself included).

I am finding that in Australia there is no media coverage or any kind of public awareness dedicated to OC apart from the occassional ad that shows the correlation of smoking and OC. I am so glad that you have chosen to make a difference and I wish you all the best in your endevours to change this situation. You are an amazing young man!!

Liza

Hi Dave

Good luck getting through your treatments - inpsirational.... and good luck with the 7pm project -i'll watch out for you!

Re your tattoo - enjoy the session(s)! I never thought to get a tattoo, probably for two reasons - one's on my neck and the other is on my arm. Two healthy looking scars that seem to do a good job of telling the story themselves!

Cheers
jon

Thanks Lizzy.
They may not be able to explain it, but the changes in the disease need to be learned not only to those who may pick up the disease, but local GP's who now know that a young person can get the disease (however unlikely). Both are very important. I've never seen anything about it in the news here either. So i'll hopefully get across to someone. I'm sending through the emails tomorrow to radio stations, tv show, etc. I think sending it on a Tuesday may be better than a Monday, because everyone will be busier after the weekend. If i don't hear back from anyone i'll look at other ways to get across though.

Hey jonp. Cheers ! It'd be great to get the story on the 7pm project. Even if it's only a short part of the show. I'm sure they could do alot of good with even a short mention of the disease. I'll let people know on here if I make any progress with any stations, etc.

Those scars do a good job of telling the story don't they I guess i'm aiming for what got me through my battle. (family, friends, my love of football (soccer), music, etc) I'll only go ahead if i get a design i love and i won't have it in a place seen too often. We'll see what happens hehe
Thanks for the msg/reply,
Cheers!
Dave

Ok, so i've just made some progress. My letter is 800+ words, and there's 5 photos attached.

I've emailed plenty of different tv shows, radio, and a few newspapers. The list I've emailed so far is-

FREE TO AIR:

The Today show, Sunrise, 60 minutes, 7pm Project, A Current Affair, Today Tonight, ABC Health & Wellbeing

RADIO:

Nova, B105, Triple M

NEWSPAPERS:

Courier Mail, Daily Telegraph

OTHER:

news.com.au


That's my list of email recipients so far. I'm pretty happy with the layout of my word document and the photos came up good. hopefully someone will pick it up and put something out there.

That's just the list I could think of at the time. If anyone has any advice for who else i should send it to, please let me know because i'm sure i'll think of a few more and i'll keep sending them out.. There's also the option of mailing letters to tv stations individually (Ten, nine, etc). I'm wondering if sending a letter is a better option than email? I guess i'll wait and see, and if i haven't been contacted this week, i'll send letters out to the stations. And i can send through some of the the brochures OCF sent me when i bought a couple of shirts recently!

Any advice is much appreciated.
Cheers,

Dave

That's awesome!! Hope you hear back from them all

Cheers Cheryld!
I've recieved one reply so far. From the ABC show 'Health & Wellbeing'.

It's the show that is likely to have the lowest viewer audience though from the list.

I've started a thread about this in the Activism part of the forum.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=135875&#Post135875

Cheers !
Dave

Dave, way to go!!!!!

You are doing a great job at trying to educate not only the public but the medical community.

That's awesome Dave...

I don't think i want to see myself on tele, otherwise I'd say count me in!!!

So you're a music nut too?

Oh and my original message was meant to say "congrats" on getting through the treatment - not good luck!

Hey dave so good to hear that you going so well after treatment and its so good that your getting the message out after reading about it seems that for a disease that if found early the prognosis is excellent i had seven mets in my neck so i was very lucky and its so disgusting that there isn't way more info and ads pushing early checkups like they do with other issues so here's to getting the message out there i was 42 when diagnosed with scc of tonsil and your young age so the demographic would suggest the need for govt action so keep it up look at the response to sbs doco on refugees and the abc is a start.
much love and peace.

2.5yr surv scc tonsil
mets to neck
teeth out
pegin/pegout
35rads/3chemos
keep on,keeping on

Cheers Christine

Hey jonp. This one i'm doing a write up for isn't on tv unfortunately. It's more an article write up to put up on a website promoting healthy living. But it's a start ! I'm into a bit of music. My brother is very talented, me not so much. But i do love listening to music. I mainly listen to older stuff. I love Queen, The Beatles, Kiss, Cold Chisel, Farnham, etc. Music is a powerful thing. It played it's part in my healing process post surgery.

Hey malo. Thanks for the support. Doing my bit to get the message feels like the least i can do. It's my way of giving back to those people who helped save my life. Hopefully i can play a minor role in helping others.

Small steps, will hopefully lead to something bigger. And we can keep spreading the word.

Hey guys, good news!
The article is now up on the website.. I wrote the article and the abc editors edited it a little bit. But it's mostly my words, except for the occasional part where they've edited it to sound a little more dramatic I think. Which I suppose is fair enough.

Anyway, see what you guys think

Here's the link the website main page where you can see my article.

http://www.abc.net.au/health/

And if you prefer the direct link, here it is:

http://www.abc.net.au/health/yourstories/stories/2011/07/20/3272418.htm

Enjoy, and let me know what you think! Feel free to share the article with others if you wish to also!

edit: for those who have me as a friend on facebook, i've posted the link to my page. Feel free to 'share' the article.

Cheers,
Dave

Great article Dave! Keep on getting the word out. I'm always proud of all our Daves.

Dave the article is great! Getting the word out saves lives! Well done you
Jayne x

You already have my congratulations on a great job Dave.
Felt it was not official unless I posted it on OCF
Fanbloodytastic what you are doing.
Gabriele

Congratulations on your important work, Dave. Excellent article. It may be worth emailing it to programs with a young demographic such as triple j or 7pm project. I'm sure when they see the details on the abc they will want to spread the word.

I'm so proud of young aussies like you. Keep it up.
Best wishes for continuing good health, from Helen

What a wonderful article! Congratulations on getting this important information out - I'm sure it will help so many to be aware of what is happening and it will help others to survive!

I enjoyed reading both articles Dave. You have the most important thing going for you thru this and that is a great attitude. For one so young, you seem to be very mature and not feeling sorry for yourself. I admire you just as I did the 15 yr old girl from England that went thru a lot too. Like you, she was a toughy.

Awesome - you are amazing!

I admire you and your article, Dave. You told it like it was/is, and I'm sure that part wasn't edited because you'd have to live it to tell about it like you did. Thank you for getting the message out - saw it on Facebook first, and some of my friends commented on it because they knew I had HAD oral cancer. Notice I said, HAD . Pray it stays that way for all of us.
julieann

Dave, I hadn't realized when I read that article - and commented on it as "David" that this was you. From here. Bravo bravo. Very well done and I applaud your courage, your writing and your continued good health.

(from another one)

Hey guys, thankyou very much for all of your kind words.
I wanted to get on here yesterday to reply to you guys but I attended a Canteen (teens with cancer) fundraiser last night and I didn't bring my laptop. It was quite enjoyable. I was on stage anwsering questions. There's talk that i'll do a speech at the function next year, so perhaps there will be more oppurtunities to come to gain contacts and spread the word some more.

I'm glad you guys have enjoyed the article. Hopefully it's a start to bigger things. I intend on sending the article to some tv stations when I get the chance. Perhaps over the weekend or early next week. All very much worth the effort. If anyone has any advice on who to send it to, please send it on to me.
Thanks again everyone.
Cheers !
Dave

Too bad we don't have a "like" button here! So proud to say I "know" you!! Keep up your good work!!!

Dave, we have just started advertising on telly in Melbourne Listerine - alcohol free....I'm going to email them to try & get them to mention in their ads that mouth wash with alcohol can cause oral cancer to......you are an inspiration darling...xxxx

Thankyou very much Cathi I'm very glad to be your friend as well!

Thanks Jeanna ! Good luck with the ad. great stuff Hopefully you hear back from them.

I started my tattoo on Saturday, that tells the story about my cancer experience, and the things that got me through it. I wish i could post the photo on here. for those who have me on facebook, take a look and let me know what you think

Cheers
Dave

Nicely done mate. Good to put a face with a post : }

Just read your article Dave - great stuff mate.
Well done.

cheers
jon