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.