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#118183 06-18-2010 01:34 PM
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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!


Cancer found on left bottom portion of my tongue on March 9th. Non-smoker and light drinker. Tumor removed March 30th. Stage 1. No chemo. No radiation.
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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

Last edited by Charm2017; 06-18-2010 04:53 PM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #118200 06-19-2010 05:19 AM
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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.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #118246 06-20-2010 09:52 AM
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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


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #118259 06-20-2010 10:19 PM
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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


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
misskate #118523 06-25-2010 08:44 AM
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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".


Cancer found on left bottom portion of my tongue on March 9th. Non-smoker and light drinker. Tumor removed March 30th. Stage 1. No chemo. No radiation.
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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))))))


Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
boatswife #118785 06-30-2010 04:17 PM
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Absolutely! Here's hoping to a full and speedy recovery so you can go back to being carefree and fancy free


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
misskate #118804 06-30-2010 07:46 PM
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Have as many moments as you want! We all have them, and that's what we're here to help each other with.

D2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #118815 06-30-2010 10:30 PM
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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 grin ) 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



08/24/07 Dx at age 44 never smoker, occasional drink
T1N0M0 G2
09/06/07 partial glossectomy(rt),neck disection (rt) 32 nodes clear
12/05/07 35 RTx w/boost, 63 GY, finished
12/28/09 PET/CT all clear!!
12/19/11 check-up, all clear - 4 years cancer-free now !!
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