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HPV

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

It seems that so many of you did not smoke and mostly all were HPV positive. I am really trying not to live in fear but I want to do everything I can to minimize my chances of getting head/neck cancer. Since my husband was HPV positive, I am at risk. It is now possible to spread via kissing.(so I've read) I do live a pretty healthy life style, never smoked, drink very minimal, and am a vegetarian and run everyday. With that said, I talked to my DR about HPV and she said I could get the guardasil shot. Of course my insurance would not pay for it because it is only approved for girls of certain age, I would have to sign a waiver and the cost is $600. Can't hurt. I think I may even have my 19 year old son vaccinated. I thought I would share that in case any of you may want to think about it for your loved ones. I have already vaccinated my 13 year old daughter.

You all are my HEROS! You have been through so much and yet you are always so positive and upbeat. Stay Strong. My best to you all!

PS. My husband is doing FANTASTIC! He is three weeks into a six week cycle of erbitux, carboplatin and 5-fu and is still working and has not lost one pound. Remarkable.

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

I'm still being diagnosed; today I get an MRI of the soft tissue of the neck, but we already know it metastisized to at least one lymph node. That pesky primary is hiding out somewhere. Both I and my husband were treated for HPV many years ago, so the first thing I asked for was to have my excised tumor tested. I'm still waiting for the results. I insisted that both my daughters get the shot as soon as it became available. I'm glad I did. And, I would recommend it to everyone.

Deb L

GaDonna
Posts: 9
Joined: Jan 2010

My boyfriend finished treatment for SCC of the right tonsil this past September. He had Cisplatin, Erbitux, and 5FU with simulataneous radiation. Brutal!!! His radiologist is convinced that his cancer was caused by HPV, however it has never been confirmed nor has he been tested. His doctor said that there was NO test for a man, but they are giving him the gardicil shot. Please advise me if you are a male and have been positively tested for HPV. How was the test administered? My boyfriend's concern is that if he is positive, he could transmit it to me and then I would be at risk of developing cancer. (I tested negative last year when he was diagnosed.)
He had his first CT scan last week and the results show no signs of cancer! Amen!
Thanks to all of the survivors who contribute to these discussion boards, you've helped me more than you know. :)

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Wow, the simularities, My name is Donna and my husband also had right tonsil SCC. They tested his tonsil for HPV when he had his biospsy and it was tested positive for HPV. I am a female, 42 and am getting the guardasil shot. Amen for your boyfreinds good CT scan. My husband finsihed his first treatment in Sept. but his first PET showed "activity" in lymph nodes in the chest so we are doing more chemo.

All my best to you!
Donna

brenda40
Posts: 2
Joined: Nov 2009

Hi Donna,
Same boat, unfortunatly! My husband had the left tonsil affected as well as ln. All clear & now the lung nodules. My question is? Could you already have the HPV & it just lies dormant? Will the shot do any good at this point? Interested for my own knowledge. I worry about cervical cancer. Wondering if I too, can get this? Thanks, Brenda

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

You never said anything about being a vegetarian; I too was for almost 15 years, I got off of it for the last 8 years of doing treatment and just trying to eat what had taste. I am planning on getting back to what I was before this interruption happened in my life. Glad to hear you and your husband are doing well, I still keep you both in my prayers at night.

Take care and God be with you.

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

At least one of the articles I read recently, and I'm not recalling which one it was, stated that there is no correlation between HPV-derived SCC, and an active HPV infection. In fact, the article stated that most people with HPV-positive tumors did not test as having an active HPV infection. It would appear that, one way or another, the body is able to resolve the HPV infection, but the long-term possibility of HPV-derived cancer remains. If I come across the study again, I will post the reference here on the H & N Forums. I'm sure enquiring minds will want to know.

Deb L.

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Hey Hondo,

I am not a PETA fanatic or anything like that, I do love my leather shoes, hehe. I just never liked the taste of meat and after research realized it is a better way of eating. I have been eating a lot more organic and feel really good about that. Than you for keeping us in your prayers. I pray for all the cancer victims everyday, it is an awful thing and I just hope I live to see a cure for all of it.

Peace to you! Donna

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

People think I am wacky because I eat an avocado every morning at work; I have no idea why I like them so much because I can eat them 3 times a day with no problem. When I go home to Honduras I stay on the farm most of the time and can almost reach out of the window to get Mangos, Avocados, Papayas, Star fruit and banana all that I want Fresh is best. I am getting home sick.

Take care

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

My ENT Doc confirmed today that my excised mets SCC neck lymph node tested "highly positive for P-16, in other words HPV-16." I was told that the sample was "infested", this being the exact word used by the pathologist. Now I'm wondering if I should follow up on some kind of assessment of whether I have an active case of HPV. Maybe the thing just goes viral and stays around forever. I would hate to resolve this case of SCC via surgery, radiation and chemo, only to have another round of SCC initiated by residual HPV. Wondering if the anti-HPV shot would do me any good at this point. Looks like more research is in order on my part.

Deb L

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Please post your research about the HPV vaccine. Most of us with HPV+ and scc will be interested.

Best,

Mick

wifeforlife
Posts: 189
Joined: Feb 2010

Drs haven't even mentioned HPV. Is there a difference in the treatment? Do they assume because my husband smoked it comes from that?

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

There is evidence that suggests a causal link between HPV and scc of the head/neck. Statistically a HPV+ Dx is a better prognostic indicator than a smoker. I am assuming that your husband's scc is caused from smoking, but there's really no definitive way to make sure of that. If he's tested for HPV and he's positive, there is a statistical prognostic benefit.

There is no difference in treatment (that I am aware of) but there may be a difference in staging and prognosis. You need to ask that question of your Dr and don't stop asking questions. The science of cancer treatment is often anecdotal with scc of the head and neck. Your Drs are obligated to truthfully tell you all they know even if they're not sure exactly what to do. If you feel that they are not fully disclosing all they think you need to tell them that. It will (should not, I guess) not offend them. If it does you might want to get a new Dr.

Best,

Mick

ratface's picture
ratface
Posts: 1232
Joined: Aug 2009

The treatment remains the same but the prognosis seems to be better although there isn't a lot of documented evidence on this it will probably bear itself out. I had my daughter vaccinated and plan to have my 20 y/o son vaccinated also. I don't think $600 is what my doctor quted me, at least I hope not. I think it was under two hundred.

Many times you have to ask for the test after being diagnosed. If you have a history of smoking and drinking they assume it was caused by that.

I've read that anyone with six or more sex partners is most likely infected with the virus.

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

I believe and I may be wrong, that Gardasil vaccines for girls are given in three separate doses ranging at about $200 each.

Most of what I've read concerning HPV vaccines for men or boys have been regarding genital warts and younger men with little mention of HPV and HN cancers. Though the majority of readings that I have seen referring to HPV derived HN cancers in men always relate to SCC in men that are in their mid to late 40's - early 60's.

I know when I was diagnosed, my son who is in his late 20's asked his physician about vaccines and diagnosis. He was told that basically there isn't anything to test for in men if you have no symptoms or anything going on.

Other readings that I have seen regarding vacination of boys and men suggest that the effectiveness versus prevention doesn't justify having the vaccine.

I think that it's just something that is growing and little research or history has been provided yet (let alone education) to get any good information at this time.

Historically, it shows that it is becoming more prevalent in men in their 50's. Also to the point of overtaking tobacco related HN cancers. Again, the feeling is because of better edication concerning smoking (less men smoking or using tobacco) but also changes in lifestyle (more sexual partners and attitudes concerning oral sex partners).

I don't really think that I have read anything definitive of exact causes or preventatives.

John

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

I asked my doc if they had tested my cancerous lymph node for HPV since my oncologist was of the opinion that my cancer derived from the virus. They said the results were negative. So does that leave only one other method for contracting my type of cancer which would be through drinking and smoking?
I am just worried now because I know that that type of cancer is more likely to come back.

GRAVEY

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I was frankly surprised by some of the seemingly smug posts here and elsewhere in the board about HPV, as if an HPV-positive diagnosis was a reprieve of some sort from you-know-what.

I am not surprised that people would react that way, that they would hear one way or another that their cancer MIGHT have been instigated by this HPV virus and this MIGHT improve their chances of success with treatment, but reading some of the posts I could almost hear "Wahoo!" over the internet connection, a sort of "I'm gonna live! Sorry about you, sucker!" thing going on, at least to my sensitive ears.

I kept quiet because we all need our ropes of hope, if you will. Far be it from me to snip at those.

I am not HPV-positive, gravey, and am frankly glad that I am not, as it means I did not pass this on to my wife nor, potentially, from what I am reading above, to my children.

I am not HPV-positive, gravey, and like any number of others you might find on this site and in this board, I am alive now more than four years since my diagnosis and treatment.

As a cancer survivor, gravey, if you are inclined to worry, there are lots of things you can worry about other than something you cannot control and which may, in the end, have nothing to do with your survival: concentrate, gravey, on what you can control.

Don't worry, be happy :).

Take care,

Joe

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Joe,

We are certainly not celebrating that my husband was HPV positive. We are however using the knowledge to help prevent myself, being the wife, and our children from contracting this virus as it is known to cause cancer. Certainly one who is not HPV positive does not have a lesser chance of survival than those who do. I know for myself that since there has been an increase in HPV related head/neck cancer we wanted to know for our own knowledge.

Absolultey concentrate on what you can control but also know that knowledge is power.

Donna

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Hi Joe,

Not sure if you are referring to me specifically or not, doesn't really matter. But if it were interpreted as I was saying HPV related cancer survival rate was any better than non HPV related that was not the intent. All that I have read and heard mainly say that HPV related cancers tend to respond well to treatment. I have no specifics or data to back that up. As you say, there are plenty of survivors both HPV and Non HPV I'm sure.

As for having HPV derived cancer, I have never heard or read anything related to passing that on to spouses or siblings. My son was concerned for him because his father is a non-smoker and contracted throat cancer. He was merely trying to find out if it was something that could be hereditary or for preventive measures, not because he was concerned I might have passed it on to him.

If I'm not mistaken, we all have cancer cells as well as HPV cells in our bodies. What causes those to turn on or become active I do not know, and I'm not sure if the medical community really knows for sure at this point.

Cancer is cancer, and we all have dealt with it or are dealing with it, that's why we are here.

We share our experiences and communicate as best we can. I don't think anyone here should take what is said as a professional medical view point. I certainly don't. I get what information I can and consider it for what it is, someone else’s experience or view of what they know, or have gone through.

Sorry if I offended you or anyone else here, that was certainly not the intent.

John

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

... that if 88 percent of all HPV-related H&N cancer victims are alive after five years, that means that 12 percent aren't. I remember more than one post on this and other boards from the loved ones of those who were in that 12 percent. Surely, those of us whose tumors were HPV-positive don't think that we're any better than those whose tumors weren't. And any one of us could be in that 12 percent, or whatever the operative figure is these days.
Me, I'm happy that my tumor was HPV-positive, and as I've mentioned before, I practically did cartwheels when my lead doc told me.
But we're all in this together, a community of people who've been through or are going through hell -- and who are determined to come out the other side and beat this beast.

--Jim in Delaware

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I was disappointed to hear that I was HPV negative. In my head, it meant I had tougher odds to try to beat. Thought it was hilarious that I was hoping I had a "social" disease. Still think it's a hoot that after years of yoyo dieting, I step on the scale at the doctors' hoping I have not lost weight. Go figure.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I guess in life we all done a lot of things we now look back on and wonder about, I know it is that way for me but I have no regrets of my passed. If my cancer did anything it made me grow closer to the God I now daily put my trust and faith in. My passed is forgiving and my future is just ahead of me with him by my side. You can’t get it by reading a book it is something you live, to the world it is foolishness but then the wisdom of God has always been foolishness to man.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey everyone,
Looks like to me this has gotten out of hand, and it probably don't matter what I think to a lot of you out there. I smoked, drank,ate the good ol southwest tex-mex diet and all for at least 40 years of my life. And by the way, I am also HPV+. So what does that make me? Dead already? Am I just going through this to see if I can live another couple of months? I don't think so. I am gonna beat this no matter how insane the decisions I made were, and all my doctors think I have a pretty damn good shot at it too. I don't care what responds better statistically, as far as I am concerned it is just not about that, it is about ones willingness to fight. I know of too many people that have been given 4 weeks,4 months or what the hell ever, derived by some stupid statistic. Statistics to me are B.S. While they may be something to look to for some kind of insane hope MY STATS are this. 100% or 0%. I am either gonna live or die. LIVE it is for me, just as many, many of you here are doing RIGHT NOW. You are my stats. So to hell with stats, and here's to the blessed 5FU being pumped into my body at this very moment and here's to my next opportunity to get strapped in for the next glorious microwave session and kick this craps butt i WILL

Damn seriously,
Steve

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Extremely well put Steve. That discussion had been bugging me a bit too.

All the numbers are extrapolations of how the entire population fares. There is some statistical evidence that says HPV+ derived scc is a better positive outcome prognosticator, but there are so many factors related to prognosis no one factor should be held out as definitive over any other. Many, many people survive scc h&nc and that is what the focus needs to be.

To be doing cartwheels or diving into depression either way is not seeing the big picture. Statistics is the common language for insurance companies and researchers when talking about populations. Staging is similar. It's only so the people working on this have a baseline, not for them to gives us the *answer* to our questions of mortality.

A positive attitude (the will to live as Steve puts it), support, and early aggressive treatment are all at least as important as cause in terms of prognosis and perhaps more important in terms of long term disease free survival.

To me, my chances are 100% that I will die, but *I* am going to have my say in how and when that happens. Like Steve, I plan on beating this and no stat is going to negatively influence me otherwise. My favorite part of Steve's post is this:

"here's to the blessed 5FU being pumped into my body at this very moment and here's to my next opportunity to get strapped in for the next glorious microwave session and kick this craps butt"

RIGHT ON STEVE!!!!

Best,

Mick

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

When I have been asked about prognosis and/or statistics, I say "Well, my game plan is to make it through this - counting on stubbornness to tip the scales in my favor." I made the mistake of getting wrapped up in stats when I first got diagnosed - had to shake that off, and decide what I needed to focus on. With a few slips here and there, I'm keeping my eye on the prize. Bleep the stats.

D Lewis's picture
D Lewis
Posts: 1518
Joined: Jan 2010

You guys are my heroes! Right behind you.

Deb L.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Could not have said it better

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