Hi everyone. I had no risk factors for oral cancer...no family history, never smoked a cigarette in my life, only drink maybe one drink a week with dinner, if that...yet, on my 24th birthday I had a biopsy done after being bothered by what I thought was a canker sore for a couple of weeks. I got the results back shortly after that, just 1.5 weeks before my wedding nonetheless. It turned out I had tongue cancer, borderline between stage 1 and stage 2. I had surgery done this past October, 2 days after I was married (having our honeymoon in the hospital was a real joy :\) by a great surgeon who was able to remove the entire tumor without needing to do any reconstruction/skin flap. He also removed all the lymphnodes from the right side of my neck and the salivary gland there as a precaution. All the edges of the removed section of tongue plus lymphnodes and gland returned negative for cancer. Therefore it wasn't recommended that I get radiation at this time, although I have check-ups scheduled with a radiation specialist for the next year or so. They also tested me for HPV, but I was negative. Who knows why I got oral cancer...bad luck I guess.

I guess the reasons I decided to join this board are:
1. To find other people like myself who were young without risk factors.
2. To have support as I constantly worry about every bump or pain I get anywhere close to my mouth. For instance...I burned my tongue on some hot coffee yesterday and now today, since my tongue still hurts and has a few tiny bumps on it, I'm dreading my cancer has returned. I'm pretty sure this must just be the result of burning my tongue, but I'm just so paranoid all the time. It'll be nice to get support from other parnoid people in remission and advice as to when to alert the doctor outside of my 6 week check-ups.

I look forward to being a part of these forums. Thanks in advance to everyone for your help and support.

-Jen

Hi Jen,

Welcome to OCF. There are a lot of great people here. Always feel free to ask any questions.

I am 29 and was diagnosed when I was 27 with squamous cell carcinoma on my right tongue. I also had no "risk factors" but as you will learn there are many young people here with OC. I have only been treated surgically also and am getting married in March!!! The cancer/wedding combo stinks doesn't it?:)

I can relate to the anxiety and constantly worrying. My fiancee looks at my tongue all the time to make sure it looks ok. He always knows what he's looking at too...maybe your husband can do that for you. That is how I have learned to not be nervous all the time. Also, you can never be too careful. If you are ever concerned just call your doctor. It's always better to be safe than sorry.

Welcome again and I look forward to getting to know you and helping way I can.

Suzanne

There are a bunch of us out there! I turned 23 about two months before I was diagnosed with stage three (borderline stage 4) SCC on the right side of my tongue. I was put through the ringer with surgery in May and then I finished radiation and chemo at the end of July. I have officially been in remission since October. I didn't have any of the risk factors either, never smoked, drank maybe a couple times a year, no family history of cancer, etc... and I've always been very healthy - but I guess that's the way it is sometimes.

Maybe some of the other young'ns will come out of the woodworks and say hi. I have a blog listed in my profile if you need some entertainment. I started it when I was diagnosed and I still keep up with it.

Anyway, welcome to the boards!

Hi Jen:

Welcome to OCF. You are young to have OC. Im sure you have been told that by so many people. There are several people on the forum who are in their 20s. I wish I could say I was one of them Last year we had a girl who was only 18 on here. She rarely posts and has moved on with her life.

You are very fortunate to be young, and have not been treated with chemo and radiation. The surgery Im sure was bad enough especially happening right when you got married.

Dont feel bad about being more aware of your body. Cancer can be very traumatic and opens your eyes to be watchful for what doesnt seem right. Try not to worry, healing takes longer after you have gone thru cancer. It will be nice having you here. Im sure you will be able to share your experience with others who are just starting out.

Welcome Jen and I'm so jealous of you being in AZ right now. Hopefully you are in the warmer part of the state. I lived in Show Low for approximately 6 years and miss the mountains and the desert terribly. There should be plenty of wild flowers this year with all the moisture that you have been getting - actually they should start showing up in the next month.

So sorry that OC has brought you here, but I hope that you are completely done with any more cancer or treatments. The group of people here are wonderful and there is no comparison to information from people that have been there too.

Jen

In 1971, I was a guest speaker at an University Abnormal Psychology class and I closed out my lecture with the old axiom: "Even Paranoids have Real enemies". This is the place to post your worries and concerns and get support not mindless platitudes or breezy dismissals. I don't think you are paranoid at all - especially considering what you have gone through.

[quote=suzanne98]My fiancee looks at my tongue all the time to make sure it looks ok. He always knows what he's looking at too...maybe your husband can do that for you. That is how I have learned to not be nervous all the time. Also, you can never be too careful. If you are ever concerned just call your doctor. It's always better to be safe than sorry.[/quote]

I find that it's best to look once a week or so, not every five minutes, because I won't detect the gradual changes.

BTW, this is a good example of what someone can do to help -- Sharing the burden of looking for changes.

Hi Jen- I'm 35 and was diagnosed when I was 33. Not as young as you but definitely on the younger side. I'm so glad that you were able to have the surgery without the freeflap and didn't have to have radiation. Just be very familiar with your mouth and tongue and check it often. Sounds like they caught it early.

I smoked very briefly in college and only drank wine and beer on weekends so I was considered not to have many risk factors either. Soemtimes it is just what you said.. bad luck.

Take care and know that you have a lot of support here.

KATE

Welcome Jen! I can relate pretty well to what you are going through! I am 23 with no risk factors either. I was married 10.19.08 and my biopsy was 1 month later. I had my partial glossectomy and neck dissection 12.20.08. I am new to remission and I am going through a lot as well. I have a blog as well www.remissionorbust.blogspot.com

Feel free to contact me anytime [email protected]. I know that by having a contact for support and questions has helped so much. I look forward to talking with you!

Hi Jen - it's frightening how many of us are going through this at such a young age. I was diagnosed 2.5 months ago, age 29.

Never smoked in my life, and drink only occasionally. I had major surgery, two flaps built as my first one died. No radiation at the moment, but I've been strongly encouraged to get a second opinion - which I'm doing.

Take care and keep in touch.

Tamara

I just want to say thanks to everyone for your responses. It's really comforting to know I'm not alone. Also, I can't believe how many other young oral cancer survivors there are out there! My surgeon at the Mayo Clinic had only seen a handful of young oral cancer patients before me. I was so young he actually had a lady come in to take pictures of my tongue for them to use in training papers/textbooks. I kept asking myself "why me?" I had no risk factors. I was so young. I had always tried to be so healthy. The more I look on this forum and the more I educate myself, the more young, low risk patients I find. I really hope that I can somehow help to make a difference in future research and oral cancer diagnosis. This really is an amazing group. I greatly appreciate this forum for existing. Thanks!

Good luck and I hope you will stay with us and share your experiences with this site.

Sometimes I wonder if it is dentistry related somehow. Some of my Drs. seemed to think this could be the link. I wonder if they've done any research on a correlation there.

Jen - if you get the chance to read misskate's blog here at OCF I would encourage you to. It is such an inspiration and really helped me to look forward at what I an do instead of focusing so much on what I am told I can not do, especially with foods.

Patty

oh thanks patty! you are a sweetie. Hope you are doing well

I cant believe your story, the first I knew about oral cancer was my mum being diagnosed with base tongue cancer (she gave up smoking 25 yrs ago) she has had all the surgery and now will have radiotherapy and we have to have hope! What I understand about you is there is no rime or reason - why? No alcohol, no smoking, just bad luck, Im 37 and that would make me mad - Im mad about my mun, but I realise that there are so many survivors out there, and that makes you one of the bravest people alive!

Hello,
Welcome to the site. I guess I'm comparatively old at 41, but I was diagnosed when I was 38. Unfortunately I'm on my second recurrence, with it now having spread into both my lungs. I too never smoked a cigarette or chewed, etc. I was also recently tested for HPV and turned up negative. You'll be surprised how many people you run into on this site who had no risk factors like us, and yet got the disease anyhow. I've been amazed by it.
It sounds like you're clear and I hope you stay that way. Welcome to a new group of friends who can give you a lot of support and encouragement in your journey.
-Steve

Steve,

Haven't you been keeping up? We now can close the book on all those unsolved cases....think Listerine.

I realize you're being sarcastic, yet I'd just like to say that the mouthwash can't be what caused my cancer. I always hated the idea/taste of the stuff growing up, so I never used it. In recent years I started using a whitening mouthwash, but it's alcohol-free. Researchers are going to have to come up with a different theory for me. :\

david ...sarcastic...heaven forbid!

Awwww she is still lurking out there?

Hi there!

My husband had his first SCC (tongue, Stage 1) when he was 28 (July 2006) - they had to remove it the day after my son was born, and they let all three of us share one room! Found mets to right nodes (8 of them positive) in Jan. 2008 and did a radical neck dissection followed by cisplatin and RT to both sides of the neck. A new tumor just formed (Dec. 2008) on the left side of his neck - this one is big - 6mm to start - so they have to do carbo/taxol/erbitux and rt first, and surgery will come in about 2 months. After three weeks of treatment, it has shrunk more than half.

Joe never smoked, barely drank, never chewed, and did not have HPV.

I don't have any of the risk factors either...never smoked, hardly drink. I haven't yet been tested for HPV, so that will be interesting.

I did however have an accident when I was a kid, playing on the foundations of the house my parents were building. I tripped, fell on my face and bit into my tongue badly enough to need stitches. In all the years since, it's occasionally had a irritated, itchy sensation in it. My ENT felt this trauma to the tongue 'could' be the factor that caused the SCC.

Hard to know.

When you get to be David's age, the mind makes you say and do things you don't want to. LOL right David Old buddy. Had to say that Dave, the Devil made me do it.

I have seen the devil and it is YOU. lol

Ar you sure you are not looking in the mirror cheeky.

OK there you go with that British stuff....what is cheeky? I assume it's a term of extreme adornment.

cheek�y (chē'kē) Pronunciation Key
adj. cheek�i�er, cheek�i�est
Impertinently bold; impudent and saucy.
cheek'i�ly adv., cheek'i�ness n.


The American Heritage� Dictionary of the English Language, Fourth Edition
LMAO
LIZ

[quote=davidcpa]OK....what is cheeky? I assume it's a term of extreme adornment. [/quote]

Hmmm.....Like, "Deck the Halls"?
OR....."Puttin' on Your Top Hat"?

Like maybe a lil unbalanced ??? OR staggering a lot??

Glad you're feeling better Jim....

Bold and saucy, that's me.

lol....you do seem pretty bold and saucy. Especially the pic I saw of you on Facebook. It seems you can really bust a move too!!!

David i can't see you on face book,where will i find this gem?.I have found someone called David Queen CPA.Is this you ?or are there two cheeky boys out there? lol
PS i am not very observant ,i have only just noticed you are now an old timer.

No Cookey, I'm David Hastings. Boy there are a lot of David Hastings on FB. I'm the one dancing with my vida.