So, I went to my monthly check up last Friday. My pathology results were in. My tumor was negative for HPV. What? I was really disappointed. I know the chances of a re-occurrence are lower when the cancer is developed from HPV. So, now I'm sitting here thinking, "Crap! So how the hell did I get oral cancer?" What does this mean?

Yesterday my sister and I went tubing down a lazy river near her house. There are a lot of college kids that tube down the river and bring a cooler full of beer. I saw so many people my age smoking cigarettes like it made them look beautiful or something. I wanted to smack them across the face and show them my tongue and skin graft. What the hell? I'm pissed off right now! There they were partying and smoking their stupid heads off and I'm sitting here worrying about having my cancer coming back. Screw them all!

No need to screw them all, they're doing it to themselves already with the smoking. I know you feel terrible but I'm living proof that being positive for HPV does not mean you won't have a recurrence. Just like you're testing negative for HPV does NOT mean that you will have one.
Sure the odds are better for HPV plus, but if you have ever played cards for money, then you know how it's not the odds that count, it's the hand you're dealt. Let's hope you got a good deal.
I still worry about the cancer coming back plus will never eat or drink again, so it's not like being HPV positive is a guarantee of anything good happening.
Glad you posted here, we can understand your frustration and anger. I recommend reading the book: Cancer made me a shallower person, most libraries stock it.
Charm
Charm

I have seen this 3rd group of oral cancer patients, if I can lump them together like this, start showing itself on this forum a few years ago. That group I identify as non tobacco using HPV-. Their primaries usually start in the forward part of the tongue or oral cavity as opposed to the BOT or tonsils. I have asked every OC doc I have come in contact with and no one seems to offer any suggestion as to likely cause.

Ashley,


Like you, I was HPV neg, non smoker, light drinker and at 33 considered myself young when I was diagnosed. It's easy to get bitter about things if you look at other people and compare their life to yours, just as it can make you feel more fortunate sometimes.

Take us for example...you caught yours early at stage 1, you're survival rate is great, your surgery minimal (in comparison to mine) and you didn't get the joy of radiation or chemo. I was a stage 4, lost half my face, had to go through chemo and radiation and my 5/10 year life expectancy is minimal in comparison to yours. Am I bitter? Nope, I'm happy for you and I'm just glad to be alive really.

Charm makes a good point, in cards it's not all about the odds...and really if you watch the pro's sometimes it's not about the hand your dealt...but how you play it. I've been classified as severely disabled and have been told I'm unhireable in the profession I had chosen due to the challenges I faced after treatment/surgery. Instead of taking that to heart, I started my own company and am working like a crazy person to keep up with the demands of a successful venture.

I would suggest a book for you that helped change my life..."Man's Search for Meaning" by Viktor Frankle (use the Amazon link on OCF's site to order!!). That book put things into perspective for me and I recommend it to everyone really but find it very good for cancer patients.

Keep your chin up,

Eric

Ashley,

I know it really is hard to relate to others who put themselves at risk sometimes. Try not to be offended by it. It will only frustrate you. People are going to do what they are going to do.. you know? If they want to roll the dice than so be it. Not much you can do.

I very much empathsize with you. You are even younger than the 30's crowd here who have gotten struck by this disease and really that is something different. Your 20's are supposed to be all about being carefree. You are just a baby! I'm so sorry sweetheart. When I was in my 20's I was out having a lot of fun. I'm so sorry that you have had to deal with being sick.

Even though a lot of us have been through what you've been through or even worse but this doesn't diminish the intensity and realness of your own personal pain and frustration. Yes your chances of a full recovery and total remission are very good... and that is something to rejoice over!.. However- I think that having to go through something like this in your 20's when everyone is out and about living life without a care in the world must be INCREDIBLY difficult. People that age just haven't had much experience with serious illness so it much be difficult to deal with this.

Hang in there and know that this experience will make you a much more empathetic and emotionally evolved individual.

Wishing you a full recovery and that you can get back to your carefree lifestyle! KATE

Thanks everyone for your replies. I really appreciate it. I know I'm a very fortunate person and I haven't endured nearly as much as many on the forum. I guess I was just having a "moment".

As someone told me when I first joined.......no one is keeping score of what we've been through. We're all here to support each other.

All of us have our moments too. It's just crap that any of us have to deal with this. (((((HUGS))))))

Absolutely! Here's hoping to a full and speedy recovery so you can go back to being carefree and fancy free

Have as many moments as you want! We all have them, and that's what we're here to help each other with.

D2

Ashley,

I too fall into that 3rd category that David describes: non tobacco using HPV-

While I am older than you (enough to be your mother ) I was still young, relatively speaking, when I was diagnosed. I wish there were answers for both of us - for all of us - and maybe some day there will be. We all have those moments. It goes with the territory so please don't be hard on yourself. It helps to vent and it's wonderful that we have a safe place to do so.

Wishing you joy, beauty and peace for today and for all of our tomorrows.

{{hugs}}
Kim

I too fell into the non-smoker, casual drinker, HPV- category. My RO at Beth Israel did say that there are false negatives and he thought there was a good posibility that I fell into that. I also had a false negative result from my fine needle aspiration from my (malignant) lymph node. I don't have great trust in lab-work results.

FNB's are not a good thing to go on just by themselves, as you are taking a guess in that big lymph node if you are actually sucking up cells from the actual malignant area. That's why they like to poke you so many times with the needle to gather from as many spots as possible.... but still it is a hit and miss situation, and an imperfect technique.

Rob, my initial FNA was also negative.(hmm... now that I type it I see it isn't FNB; will assume we're speaking about the same thing as there was definitely a FN involved, and they did a B!)

It wasn't until I had surgery for the supposed cyst and they biopsied it (again) that they found the cancer. Interestingly, the ENT who did the first FNA (I had to find a different surgeon after that because the first guy didn't take my insurance) said that because the "cyst" was filled with fluid that meant it was a good sign as to negative for cancer. Oh well. When my actual surgeon did the "cyst" removal, he later told me he knew it was SCC as soon as he saw it.

So it goes!

D2

Bring on the moments, we all need to vent and let the steam escape from our ears!!

If you use mouthwash,,stop,,it causes oral cancer. sigh, just brush and floss and drink lots of water to keep smelly bacteria levels at bay.

Non alcoholic mouthwashes like Biotene are fine.

I stand corrected, I should have been specific and said mouthwash with alcohol. Thankyou!