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.