I figured I should go ahead and introduce myself on here. Like most newbies, I guess I have been snooping around the boards gaining lots of insightful information for a while now, but it's about time I let you all know that I am here reading your posts!

I am 23, yes, I'm a young'un. Apart from getting cancer, I was very healthy! I ate my veggies and fruit and was very active. I played tennis almost every day. My medical oncologist made the comment on meeting me the first time, "Man, when you get sick, you go all out, don't you"? I don't have HPV, or any immune system disorders. I don't smoke, and I hardly ever drink (too many calories!) I was diagnosed at the end of April with SCC. I had an ulcer on the right side of my tongue that was not healing up that had been there since December, and I, of course, was ignoring it. I mean seriously, I was 22 at the time, who gets oral cancer at 22? Me apparently! So I finally got up the nerve to see a dentist in March, thinking that I had a rough filling that was cutting my tongue. So I had that smoothed down and was given some canker sore medicine that did not work. Then I was referred to an oral surgeon who put me on steroids. The sore was responding to the steroids so we waited a couple weeks to see what happened and then I finally signed my sanity away and allowed him to do a biopsy around mid April. Then about a week later I received a phone call and was told I had cancer. Then began the million doctor appointments and scans.

I don't think it hit me at all before the surgery that I had cancer, I was holding up great while everyone around me freaked out! I had my surgery on May 19th, it lasted 14 1/2 hours, and I spent 11 days (7 in ICU)in the hospital because I came down with pneumonia and was having stomach issues with the PEG tube feedings. I had a little more than the right half of my tongue removed and a flap constructed from my forearm. I had a bilateral neck dissection and one positive node. I had a PEG tube put in while I was in the hospital, and I also had a trach (that was removed before I left the hospital).

Needless to say I survived and now I'm going through radiation (TomoTherapy) and chemo (Carboplatin) - yesterday was my half way point! I started off at the beginning with really bad nausea and vomiting, I went to the ER once for fluids, but I have been mostly fine ever since. I developed a lovely case of thrush and I only have one mouth ulcer (so far). I'm still waiting for the bottom to drop out with treatment because I still have a fairly full bottle of pain meds waiting for me.

My ENT is absolutely amazing and that has made all the difference in the world. And for the first time in my life I actually look forward to appointments with a doctor!!

It's been a long few months and I still have a ways to go! But I am trucking along and taking it a day at a time! So I am just saying hi and letting you all into my little world. Hopefully I didn't bore you to death with my story!

Hey Sweetie!

So sorry to hear of your struggles with tongue cancer. My gosh I can't believe this hit yu at 23! I too didn't relaly have risk factors. I did smoke for a little bit and drank beer and wine on occassion but the Drs. don't think that was what caused it... just bad luck.. and maybe dentistry (that's my theory as I have a lot of fillings implants etc ...) I had the same surgery radiation and chemo as you did but i have 90% of my tongue removed. You are gonna do great. I am a year out and am doing 1001 times better than I ever ever thought I would be. I am 25- this hit me when I was 33- I know I'm a little older but it is different to go through this at a younger age - so if you have any ?s or need some support pls don't hesitate to email/pm me

HANG IN THERE! You are almost done

XOXOX Kate

Yes you are very young to have this garbage. But we have a girl in her teens that has it and has been fighting it for a long time. You are a brave young man and you might never find out the cause of the OC.. just keep in everyones prayers and the best to you.

Stephanie:

Welcome to OCF. Im so sorry that you must go thru this at your age. There was another young girl here from England who was only 18 and just recently finished her treatments.

Age is one thing that gives you an advantage at fighting this awful disease. Your body will bounce back much quicker than someone who is older. You have only a few more rough weeks which will be over before you know it.

Ask any questions you need to. You will find tons of info here to help you thru and lots of support too.

Christine

and I so get mad when the doc says i dont think you have cancer... Your risks of having cancer due to your age is slim to none. I dont care who you are or your age, we are all prone to cancer. Sweetheart my heart, thoughts, and prayers are with you. I hope all goes well.

Hi Stephanie,

Sorry you are here but love the energy in your post. I hope the rest of your treatment goes smoothly and your done with this once and for all.

Welcome Stephanie,

I loved your post. You are so positive and thats what it takes to get through all of this. You will have good and bad days and that is OK. Just know every day that passes is a day closer to getting better.

Take care, Diane

Stephanie,
Your introduction would never bore this fine group of wonderful people. I'm sure we all take a breath before we read the introductions from new people because none of us would ever wish this on our worst enemy. It also bring back a lot of emotions for us all.
I never really got emotional about my diagnosis until after my surgery as well. I think it is because I was so busy trying to intelligently interpret all of the information I was getting from so many doctors that I was way too preoccupied. 21 days in a hospital bed gives you time to think, emotions set in.
You seem very upbeat and positive try and keep that up because it will only help you.
Ask any questions you want, post your thoughts, experiences and even vent if you feel the need. You have friends here and we may not have all the answers but, you will know that you are not alone.
My thoughts and prayers are with you.
Contact me anytime if you wish.
Cheers,
Mike

Hi Stephanie,

Your introduction was anything but boring. You have an amazing sense of who you are and an attitude that will surely help you continue your fight with this dreaded disease. One would have suspected HPV being the cause of your SCC based on your age and history of not smoking or drinking. However, there are a small percentage of us that had SCC with no known etiology. I guess if we knew why, we might be more at ease (if that's possible at all). But we don't.

I skimmed through your blog and you really are an amazing young lady. I wish you good luck as you finish up your treatment and hope that you continue to post as your experiences and your great ability to communicate will definitely help others.

Jerry

Welcome !

Kudos to ur attitude ! and the way it is, ur sure gonna win this battle !
Also since ur young you have the added advantage.
Needless to say hang in there

Stephanie,

I'm so sorry that you had to join this site but it is quite an amazing site for those of us in the need.

I too am surprised that HPV was not the cause but there are some unexplained cases that drive us CPA's nuts as we like to have everything fit into a box and yours doesn't fit any mold.

You hang in there and my bet is that you'll walk out of that dark tunnel before the end of August and your recover will begin.

Thank you all for the great welcome! You all are amazing! Only 14 more radiation treatments to go and while I'm excited about being done with that, I'm even more excited about the thought of getting my PEG tube out. I get all giddy inside thinking about that day! I remember my husband being mad at first when we found out it was cancer because the dentist and oral surgeon (and of course myself) kept putting off having a biopsy done, because I was so young and had no risk factors. I joke with a friend of mine, who is older and developed lung cancer (she never smoked and also lived a healthy lifestyle) that we should have "lived it up" and maybe we would have been diagnosed sooner (her diagnosis was also delayed because of a lack of risk factors)!!

Thank you for all the encouragement, hopefully I'll be able to provide some in return!

Welcome, Stephanie, to another Louisianan. I live in Alexandria and had my surgery in Shreveport at LSU. Do you still live in BR? or do you now live in Tulsa? Where was your surgery? I have a friend on this forum (Splenda) who lives in Madisonville, LA, whose surgery was done at LSU-NO) and she adores her ENT, who is head of the H and N dept. at LSU and now works in BR after Katrina. Maybe you two have the same doctor! I am soon going to have a consultation with him to find out about a reconstructive technique that he does that my own surgeon does not do.

Welcome to the forum. You will meet many, many people with help to give you, and you will have plenty of chances to support other people. With your sunny attitude, you will be a real addition to our "family."

XO--Colleen

hi Stephanie,

your intro reminded me of Harry, who i met last Thursday. he was in the hospital to have a peg installed... he was 1st treated for oral cancer in 1984.. i think that may have been before you were born! Harry and his wife are great folks.

Harry is the longest survivor that i know and you are the youngest. keep a brave heart... someday, i'd like to say that you are the longest survivor that i know... and that you are doing things that make you happy.

cu,
larryb
treated in 2001

Stephanie, forgive me for putting on my post young man. LOL I just didn't see that you were a female. I will read more closely from now on. You will whip this beast and live many years.

Hi Stephanie,
This board is the very best from an informational support forum. The people here are absolutely wonderful and when questions arise or treatment problems, ask away...this is the most incredible place to be when you are going thru this hell.

I was born in Shreveport & grew up in Natchitoches, Louisiana and love that state. My family is still in Natchitoches and I was just there last weekend visiting my family and currently my daughter is taking some veterinary classes at LSU this summer and will return to NSU in Natchitoches this fall. She is 22 years young and I could not imagine what life would be like if she had this dreaded disease....you have such a positive outlook and YOU will beat this - so hang in there and ask away...We are here for you - this forum has become my family and is a great support for patients and I think for the caregivers as well.

Keep your chin up and make the x's on the calendar as you get through each day....YOU WILL BEAT THIS!!!

Praying for you and your family,
Paula

Hi Stephanie,

I just wanted to let you know that I'm thinking of you and find it horrifying that someone so young should have to go through all of this! Your attitude is remarkable and I hope that you are able to remain positive right through your treatments.

I am currently in treatment and have 7 rads and 1 chemo to go. I finish on the 25th July - 5 days before you! That day can't come quick enough! Hopefully you will have a quick recovery and can get rid of that PEG in record time.

I'm more than double your age (50) but am still considered relatively young to have this disease. I also did not have any of the usual risk factors (never smoked, drank little alcohol, good oral hygeine, no family history etc) I also do not have HPV (apparently very few, if any HPV+ cancers start on the tongue). My friends and family think that 25 years of drinking Diet Coke (almost addictively) may be to blame, but my Drs don't seem to think there's any link and I have found nothing on the internet that suggests any connection. I really have to put it down to bad luck - I may never know or have an answer to the 'why me' question. Beating this thing is what's important now anyway!

Good luck with your next two weeks of treatment I hope that you will get through it and will come out the other side and have a quick and full recovery!

Best Wishes
Sue

Steph - Welcome to OCF as a non lurker participant. We all learn from each other and having you actually post is a good thing. You may not realize it, but some other lurker is going to read your post, read about your young age, read about your lack of risk factors and it is going to comfort them. They are going to see themselves in you. Just by being here openly you are already helping other people with your strength of spirit that comes through loud and clear. I wish you a rapid journey through all this, a a health return to a normal life.

Not meaning to hijack your thread, but for the other long term posters here, could we make a list of the people under thirty we have seen come through these boards? I would like to refer them to a university that is doing a paper on the demographics of the current subset of OC patients that is (historically at least) abnormally young. I don't remember them all. Help would be appreciated. My recollection is that they are mostly unknown etiology, and if that is true we may have some keys to finding the commonality in these very young no HPV+ patients. Science and medicine is are not fond of unknowns, and each discovery means another opportunity to head things off at the pass, through early screening for that subset characteristic.

Just an update here:

I have 10 more treatments to go, which means after tomorrow, I've reached the single digits! My neck has gotten really red this week and is getting noticeably dryer, so I'm slopping on the Aquaphor every chance I get. I've only got two mouth ulcers, which hardly bother me, so I'm not taking any pain meds yet. I've started taking Robitussin for that stringy nasty saliva nonsense, and it's been a huge help. I've slept through the night both nights that I have taken it! And it has helped to keep me from gagging during treatments. That wretched mouth piece does not mix with thick saliva and laying on your back! My MO said that he wished everyone could be doing as well as I seem to be, but I quickly informed him that everyone would have to be 23 when they get cancer, and that would be horrible!

Now that I'm getting to the end of treatments, everyone has advice for what I should do to keep from getting cancer again, and it makes me laugh. I hear about new fancy cancer "cures" on pretty much a daily basis. Maybe there's a little something to some of them, but I'm more apt to believe that if God has it planned for me to get cancer again, He won't care if I eat green beans or cake, so as soon as I can taste cake / sweets again, I'm chowing down!

Jim- don't worry about it, my chemo nurse always calls me Mr. Bradley. Apparently my entire name doesn't fit on the sheet she looks at so it says Stephan, and as soon as she says it, she gets mad at herself because she knows better!

Sue- I hardly ever drank coke, so I don't think that's the missing link. I started to right before my surgery to combat the drowsiness from the pain pills I was on. My ENT just thinks I have a weak immune system for some reason (obviously, I got cancer, right?) and I, like you, just think I got the short stick in the draw.

Larry - 1984 was definitely before I was born!!! EEK!

Paula - Nice to see another fellow Louisianian!!

Brian - I continuously hope that something good will come out of my cancer. When I was first diagnosed, I was told by a family friend (and cancer survivor), not to waste my cancer, and I've tried to make the most of it. You can add my name to the list of young'uns and hopefully something good will come out of that study!

Steph - thank you for offering. I will need you to PM me all your contact information so that I can pass it on to the researchers.

I'm so excited to hear you are in the single digits of your RAD treatment! Brian - thanks for singling out the young uns and maybe your university contacts can hurry up and find a cure for this so all of this cancer stuff isn't in vain....when life give you lemons...make lemonade, right?

Paula