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Joined: Mar 2008
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Patient Advocate (old timer, 2000 posts)

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Hey, it's super Sunday, so here is a super Question. It's come to my attention that many patients and caregivers are afraid that if they have sex, the caregiver will "catch" the patient's Cancer. It appears to be a conflation of the separate facts that HPV is transmitted sexually and can cause oral cancer into an new ugly Urban Legend.
I have not seen any valid studies showing that our oral cancer is contagious. My wife is cancer free yet we still enjoy the full panoply of sex. I have not read of any documented instances of a patient giving oral cancer to their sexual partner.
The majority of HPV infections are resolved by our immune system without causing oral cancer. Since this is something my doctors never talked about, not even once, I assumed they would have warned my wife and I if there were indeed something to worry about.
With over 7 thousand forum members, if a patient having sex with their caregiver or spouse causes cancer, why haven't we heard even one instance? I submit because while there is plenty to worry about, "catching" oral cancer from your patient is not one of them.
I've been told by a top authority that people do actually think and fear this to the point of marriages breaking up.
So I'm speaking out here.
Charm


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
Joined: Jan 2011
Posts: 123
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We did ask Ken's oncologist about this and she said that if you have had more than 2 partners in your lifetime you have most likely been exposed to HPV and it just depends on how your body deals with it. She said I should continue to get annual pap smears and she said we should give our daughter the vaccination when she is old enough.


Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
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80% of women will have been infected by one strain or another of HPV by the time they are 50. Chances are if you are reading this then you have one strain or another. Big Whoop.

When I was asked by the Men's Health writer if my knowledge of HPV has changed my sexual practices my response was "Nope, I try and have sex with my wife as much as possible."

It doesn't matter to me IF I was HPV+ or not. If I was, it wouldn't matter if I gave it to my wife or she gave it to me...lord knows we both have had more then two partners. So say she leaves me over it...statistics are in favor of her getting one form or another from the next person she's with.

It just makes sense that the more you know about HPV, the more you make sure you get checked out regularly, both dental exams and Paps. You can't turn back time and suddenly be celibate or reduce the number of partners you've had. Trust me there's a few I wish I could knock off the list and still blame the tequila for...damn you Cazadores!!

my $.02

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.
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What's "sex"?
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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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"Above & Beyond" Member (500+ posts)
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Hee, hee, hee, David. You are so funny. But, if someone does tell you what it is, please tell me wink
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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Charm you posted this just so you can brag about your prowress didnt you. hahahahha.

xMinh


35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
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Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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xMinh

It was more of a (Pun alert!) Pubic Service Announcement.

Charm


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
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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And that's what you get if you service too much of the public!!! Badump bump,

My sister inlaw is HPV + I think she got it from her first partner - if it has links to oral cancer etc... then technically having sex can cause cancer - in certain people - you can't un get it though so best just to see if you can have your daughters vaccinated! And if you are negative protect yourself!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Posts: 3,082
Cheryl

It's not just the daughters that need the vaccine, the sons do also as it will protect them also from HPV infection.
Charm


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
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
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So let's have a reality check here. Numbers. 300 million people in the US. 37,000 this year got oral cancers. About 50% of those were caused by HPV16. This virus is one of the most common viruses groups (130 versions - 9 cause cancer and 6 more are suspect of doing so because they are often found with the oncogenic ones, but do not appear to do it alone) out there, it's certainly the most common sexually transferred infection of all according to the CDC. There will be about 3700 deaths from cervical cancer, 8-9k from oral. It also causes anal, and penis cancers, which have really low incidence and death rates. (Not to many people die from penis cancer... they see the problem early and they just lop that puppy off..ouch) So when we speak of risks, we really should add them all up, not just oral. Even if you do that, with this common very ubiquitous virus, 99.9% of the population has an immune system that recognizes it as a threat and in some period of time between 2 months and 14 months clears it from your system. (This is based on the cervical experience not oral, but we suspect it is the same or faster in the mouth as the cells of the oral cavity turn over and are replaced faster there than just about anywhere in the body through apoptosis.) So who has a calculator out there and wants to figure out your odds?

Some of us (me) have immune systems, and a genetic profile I can thank my grandparents for, that does not recognize HPV16 as a threat, and I don't clear it. My wife has a more robust system. But those of us that the virus persists in for protracted periods of time (the real risk), are a small minority of the population. We just finished a study with Gillison and NCI soon to be published, and this virus is going to rapidly increase in incidence of disease in the next 5 years, particularly oral cancers. Big Time. This is a math problem not a sex (change your behavior) problem, and we can do nothing about what is coming down the pike today. The only thing that we can do is see that the vaccine is used on our kids so the next generation deals with a reservoir of the virus that is significantly smaller, and get screened routinely to catch very early stage disease. Yes, the vaccine is for cervical cancer, but the net of it is that it prevents you from getting infected period. Even just considering cervical cancer, men are vectors of the virus to women, so they need to be injected too. Then the incidence of oral cancers will begin to decline and go back to the lifestyle choice etiologies like smoking. Remember there is no such thing as a viracide, so we can't kill it with some outside intervention. It has to be done by our normal immune responses. If we could kill viruses, we could cure the common cold, which is a virus.

So now one of you Google fans.... Please post how many people in the US are hit by lightening, have a catastrophic reaction to peanuts or bee stings, or are bitten by sharks, etc. and things we think are rare. Let's put the HPV issue in a context that we all can relate to. Also find out how many people die in car accidents every year in the US, or perhaps just in California. When someone does, let's see what those odds are and look at things with a balanced eye. Don't forget Charm's favorite thing to say which is - if it happens to you the chances were 100%..... 300 million people - let's do the math.


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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