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Joined: Apr 2009
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Joined: Apr 2009
Posts: 329
I'm glad someone brought this up. I've been wondering how did I get SCC on my tongue for a long time.

My late husband had Stage 4 BOT cancer 13 years ago. We never heard of HPV back in the day. Ten years later I was diagnosed with SCC on my tongue is this related to his cancer or is it a coincidence?

No one drinks out of my glass I hug and kiss my Grandchildren on the cheek.

This has been on my mind for a long time.

Connie



SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



Joined: Nov 2011
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Connie;
I ask myself the same questions all the time. My wife had mononucleosis and about 4 years later she was diagnosed with lymphoma. About the same time I was diagnosed with SCC of head/neck with unknown primary. We are both HPV negative but are both positive for Epstein Barr virus (EBV) which is also causative in both lymphomas and oral cancers. I guess that we'll never know. You are wise to take precautions. I don't know if there will ever be a way to determine if your and your husband's cancers are related. Oral cancers can be caused by so many things and some are simply a result of bad luck with no identifiable causative factor. I'm glad that you are clean and moving forward.

Last edited by Richard T.; 03-22-2012 07:26 PM.

2006 SCC T0 N1 M0; 2006 EBRT x 33, chemo x 3; 2010 Extraction 2 molars; 2010 HBOx30; 2011 Dx osteosarcoma of mandible; 12/20/11 mandibulectomy with temp. titanium plate; 1/31/2012 chemo x 4; 9/19/2012 Reconstruction of mandible with graft from hip and bone morphogenic protein
Joined: May 2010
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klo Offline
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Like everyone else, I am unsure how risky continuing with intimate contact is but have decided that it can't be that risky as I don't have oral cancer and neither does anyone else I know who has a partner who has been ill with OC.

So I googled a few figures and did a few calculations and came up with some thoughts on the whole risk of "catching cancer" thing.

I have also realised that I have a better chance of dying from eating something that comes out of my refrigerator than anything I might catch from Alex.

US population figures:
2010 census states that the US has a population of over 300 million people; 200 million adults and 100 million over the age of 50. If, as suggested by the research, 50% of people have been infected with HPV by the time they reach age 50, then 50 million people have been infected with HPV in the US.

Oral Cancer:
The SEER database run by the National Cancer Institute predicted a total of 39,400 cases of oral cancer in the US in 2011. The same database suggested that 20% of oral cancer was oropharyngeal cancer which is the most common site for HPV+ve tumours. I do not know what proportion of oropharyngeal cancers is positive for HPV but let�s say it is 70% (this number is stuck in my head for some reason). That means there are 5,516 people who have oral cancer caused by HPV.

Put another way: Of the 50 million people who would have contracted HPV at some time in their adult lives, 49,994,484 of them didn�t get HPV associated oral cancer!!

We need to remember that there are TWO parts to this story
1. most people who are infected with HPV fight it off over a couple of years and suffer no long term or permanent health consequences.
2. There is something else going on with people who progress to cancer that is not common to everyone.

I wonder if that thing at the back of the fridge under the plastic wrap that looks like it might be a chicken schnitzel would be all right if I make sure I really heat it through �



Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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It is very important to keep this in perspective. Of course to us here, it is a really big deal, but as klo has pointed out in comparison to many things, this increasing risk for HPV16 to cause cancers is small. Small does not mean it can't happen to you, it means small. The CDC numbers for HPV do not consider or know, how many of the 50-80% of the entire population that gets an HPV infection will get what types, so there is no hard data on how many will get HPV16. And we know from the cervical cancer model that that the vast majority of women that do, clear the infection in about 18 months. The real problem is just that. While it is highly likely that you will come into contact with it in your life (there is a reason that the FDA doesn't recommend the vaccine for people over 26, because they feel that sexually active people have likely had the virus before then) but what you can't know is if you have an immune system the recognizes it as a threat or not. About .9% of us are in that boat. So you have to actually get (out of 140 versions of HPV) #16, and out of of all the people that get that you have to have whatever anomaly in you immune system that does not see that as a problem as well. All this you can thank your grandparents for in your genetic make up.,

Since there are so many "you can't know's" in all this, the only thing you can do is arm yourself with information, limit the volume of exposure (number of sexual partners) to mathematically reduce your risk, and get screened every year. KEY IN ALL THIS is that you need to know the early warning signs of a developing HPV+ cancer, so that if you draw the unlucky card, you find it early when survival is higher, and treatment related morbidity is lower.

Nothing in life is completely safe. Not driving on the freeway, not normal sexual practices, not eating ground beef. (add your favorites to the list that goes on till the end of time. ) All we can do is (without living in a bubble) try to understand risks and take reasonable ones.

Last edited by Brian Hill; 03-27-2012 07:32 AM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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