HPV+ 'Shame'. Do you disclose your HPV status?

OKCnative

Personally, it never occured to me not to be open about the fact that my base of tongue cancer tested positive for HPV. However, after meeting numerous people (online and in person) who have received treatment for HPV+ cancer, I have encountered several who have choosen not to reveal that their cancer was most likley caused by HPV. The reason has always been the same; they feel some sort of 'shame' (if that's the right word) because HPV is considered a sexually transmitted infection/disease. Regardless of the fact that most of the US population has or will be exposed to HPV, I find many people don't want to admit to others that an STI most likley caused their cancer.

For me, I like lots of information. I also see great value in educating the public.

I've yet to meet anyone (non cancer patient) who actually knew any real facts about HPV. My wife's own PCP (a female), knew very little about the virus. She had no idea the virus often sits dormant for decades before causing a problem. She literally asked my wife (of 20 years) if this meant I had cheated on her, since my wife's yearly screenings are always fine. She even conducted the co-testing to make certain she is HPV-.

I personally tell anyone who asks about my cancer that it was caused by HPV and that they need to pay very close attention to certain signs of illness because HPV caused cancers are often not properly diagnosed for some time after treatment is first sought.

I personally think it does harm to not disclose that HPV most likley caused one's cancer. It's this "don't ask, don't tell" mentality that keeps the misinformation out there and causes others to feel they too should feel shame should they receive an HPV+ diagnosis.

When I talk about it I remind parents that they should get their children vaccinated against HPV. Fortunately, most parents I know either have or are planning on it. 

I also find that the first thing out of someone's mouth is "well, I know I don't have HPV." I remind them that, that is most likley not a true statement. In reality, most of us (who have not gone through treatment) have no idea our HPV status.

So, what are the thoughts of those here? Do you freely disclose your HPV status? Do you ever feel you're being judged by disclosing HPV caused your cancer? Do you use it as an opportunity to educate the public/friends?

johnsonbl

I tell people...

And educate.  Life's too short and full of anti-vaxxers to not try and educate.

Andy13460

HPV+

It was the happiest day of my life when I found out that my cancer was HPV16+ it meant I had a far greater chance of living through this. I couldnt care less what anyone thinks about me never have never will. All my Grandchildren either have been or will get vacinated as a result of it so thats a good result.

swopoe

My husband’s tongue cancer

My husband’s tongue cancer was HPV-. But we do have three children, including a 13 year old and an almost 12 year old. Because of all of what I have learned from this board and all of you, they are getting the HPV vaccines. There is no shame in a HPV diagnosis or in the vaccinations. I wish more people understood that.

AnotherSurvivor

Okay, so I've practiced maybe

Okay, so I've practiced maybe risky sexual techniques with my wife of 38 years, and slept around when I was in the Navy during Vietnam and was a world class bum afterward.  Sue me.  Surely the rest of world has something interesting they're guilty of.  It does bother me there are zero, zip, nada epidemiological studies on this, they would make for fascinating reading.

Chicklette

We tell anyone who asks...

My husband's cancer was also HPV+ and we tell everyone who asks about it.  That meaning simply that we don't approach random strangers on the street and say "Hey, did you know I had HPV+ related cancer?" ...   But, all of our friends and anyone who we happen to be talking with about cancer, we tell them.  We also feel it is important to educate people about this risk factor.  Last scan was NED and he has another scope, poke and prod next Wednesday so fingers crossed.

Sprint Car Dude

HPV+

If you ever kissed someone, there is a great chance you have HPV living in you somewhere. I really don't care what anyone thinks of my HPV status. No shame here.

AnotherSurvivor

Chicklette said:

We tell anyone who asks...

My husband's cancer was also HPV+ and we tell everyone who asks about it.  That meaning simply that we don't approach random strangers on the street and say "Hey, did you know I had HPV+ related cancer?" ...   But, all of our friends and anyone who we happen to be talking with about cancer, we tell them.  We also feel it is important to educate people about this risk factor.  Last scan was NED and he has another scope, poke and prod next Wednesday so fingers crossed.

That can be sort of fun.  I

That can be sort of fun.  I did a couple of 911 runs to the ER, got the same set of local EMTs both times.  The first time I told them I was a cancer patient and probably reacting to chemo.  That led to discussion of my cancer.  When I educated them on the characteristics of HPV+ and its pathology I thought a couple of the younger ones might need oxygen.

I've beat up my chemo oncol on this.  The possible sexual dimension on this bothers me not at all.  The attribution of causality when there seems to be a lack of direct evidence bothers me a lot.  I've taught applied statistics, one of the most dangerous things in the world is a graduate student armed with a regression analysis. Torture data sufficiently and it will confess to anything.

z

HPV

I have had HPV related anal cancer.  I have heard that 80% of the population has HPV and it will lie dormat until our immune system can not stop it from causing cancer.  Most HPV will be killed by a healthy immune system.

 

When Beth Champman documented her throat cancer not once was HPV metioned.  I believe that it would have been a great opportunity to educate about HPV related cancer.  If indeed it was HPV realated.

FamilyLove

HPV

Yes.  I tell people if the question of how did you get cancer comes up.  I don't really care what people think because like most of you I think it's important to educate people.  I want everyone to know how important getting the vaccine for your children is.  I sure wish they had it when I was a kid.  

CivilMatt

oh yeah

OKC,

I had Squamous Cell Carcinoma, Base of Tongue and I was hpv+.  I have never not told anybody, but most people do not care and quite frankly they don’t really want to talk about cancer.  There are those who want to outdo me, but I have plenty wrong with me.

My sister is a doctor of micro-biolgy and worked closely and directly with the hpv (virus) for 10 years.  So, I have been privy to many hours of hpv 101 along with my brothers, sisters, Mom & Dad, it was a hpv party!

Matt

KareGiver

Thank you, OKCnative

Thank you for starting this thread.  I check in occasionally and will be upfront right now - my husband did not survive this cancer - passed January 2013.   Saying that, he had throat problems for YEARS before and was treated by ENTs for acid reflux. I have had absolutely NO problem telling people, when asked, what type of cancer he had (when you say throat, they assume smoking was involved, of course).  Some people mistake HPV for HIV - although that is becoming less frequent.  We MUST continue to educate people about this - especially men.  My husband was diagnosed in 2011.  Things have come a long way and I have great faith that you will live a long life.  Best to you and your famiy during treatment.  You got this!   

 

OKCnative

So glad to hear the reactions

So glad to hear the reactions here - though I really felt I would find people of similar opinion to mine.

Like I said, I was taken back when a friend said they were intentionally not going to disclose the origin of her husband's throat cancer because HPV is considered an STI.

I firmly believe we most often operate under a herd mentality and when we see people act embarrassed about a topic we tend to also feel we should be embarrassed. When we are up front and open then I feel others realize they can be too.

Hopefully if others vistiing this forum read this thread they will feel empowered to educate others as well.

Chicklette

OKCnative said:

So glad to hear the reactions

So glad to hear the reactions here - though I really felt I would find people of similar opinion to mine.

Like I said, I was taken back when a friend said they were intentionally not going to disclose the origin of her husband's throat cancer because HPV is considered an STI.

I firmly believe we most often operate under a herd mentality and when we see people act embarrassed about a topic we tend to also feel we should be embarrassed. When we are up front and open then I feel others realize they can be too.

Hopefully if others vistiing this forum read this thread they will feel empowered to educate others as well.

STI

One thing I guess I don't understand is why people are so ashamed even if it was an STI ... and not that it matters, you can get an STI from sleeping with ONE person.  My husband had been married for 25 years to his first wite and never cheated.  Somehow he contracted HPV.  It is what it is.

jkinobay

Andy13460 said:

HPV+

It was the happiest day of my life when I found out that my cancer was HPV16+ it meant I had a far greater chance of living through this. I couldnt care less what anyone thinks about me never have never will. All my Grandchildren either have been or will get vacinated as a result of it so thats a good result.

Amen.............HPV 16 was ironically great news

As my Pathologists and Oncologists told me............if you have to have HNC this is the one to have (SCC HPV+) because historically the survival rate is well into the 90+ percentile.  For some crazy reason it responds extremely well to Chemo and Radiation.  I literally am living proof.................I just hit the 10 year NED mark and very proud of that.

As for contracting HPV, and as others mention here, it is commonly thought that well above 80% of the world's population is positive for one of the vast number of HPV strains.  In my case DNA testing indicated that most likely my HPV16 came from my mother as I passed through the birth canal......................58 years previously.  My cancerous cells were encapsulated in a cyst in my neck and had likely been there since birth.  I had been abandoned as an infant and later adopted and sure enough when I finally got the history of my  Bio-Mom I found out that she died of cervical cancer........................and guess what the #1 cause of cervical cancer is???????  You got it.............HPV.

So....................my vote is for openly discussing it.  The benefits of perhaps better educating/protecting even one person far outweigh the personal sentiments.

JK

10 years and keepin on a keepin on............................Blessings to all

AnotherSurvivor

In the end, ignorance is the

In the end, ignorance is the deadliest disease.   My beat up chemo oncol did a very frank discussion of this topic at one of our support groups.  They are reporting that the Gardasil vaccine is not proving as effective as they had hoped.  I certainly wish I had known far more about HPV+.  Stopping this at Stage I or II with surgery seems a whole lot better idea than Stage III or IV with chemo and rad.  

Strawberry54

HPV+ Yes, yes, yes!

I was up front about the HPV+ cancer because I want people to know that this is an increasingly common cancer in my age group (60’s).  I am not embarrassed, but I am honest and my generation was all about ”free sex”and folks, sex isn’t free.  Nothing is.  I am typical for my age group, two or three sex partners, all in a committed relationship.  This is typical of base of tongue cancer that is HPV+.  I cringe to think what the “hook-up” generation faces. I want to see parents vaccinate their children, both boys and girls against HPV.  I want the ads for the vaccines to start including this particular cancer.  

If something good can come from me being an advocate, I am right there to speak up and do what I can to educate and help people to keep from getting this cancer.  Plus, why wouldn’t you want to share that this is so much more curable when it is HPV+?

My dentist was amazed at what she had to do to actually see the cancer.  Using a tongue depressor during oral cancer checks can help the dentist do a more thorough screen.  Even so, the initial tumor looks like a pimple and is easily missed.

koolhandwv

HPV recurrence transmittal

10 years ago I had HPV16 head and neck cancer.   It hasn't really been an issue as far as disclosing because I was in a committed relationship at the time and she was with me throught out the entire process.

We've since split up and I find I'm having multiple issues with trying to move on.  One of them being being ashamed of my HPV and upon disclosing it, being rejected.  Or subjected to a litany of questions.  Even more so than I usually get when people ask about the scar on my neck. 

The problem I keep running into is that it really doesn't seem like there's an actual answer to most of them.  Can I still pass it on or has it been flushed from my system as I understand happens for a majority of folks fortunate enough to not develop cancers.

The other issue I have is not related to HPV.. but rather people calling me brave for surviving.  All I can think of is the people who I knew at the time who fought so hard and didn't survive.  I lost 4 people in my circle. I was the only survivor.   All I did was lie on a table and let them irradiate me for 20 min a day for a month and pump chemo into me for 8 hrs at a time for 6 treatments and have a radical neck dissection that has left me in constant pain, ironically an uneeded treatment as there was no viable cancer found.

I don't feel brave.  I don't feel like I earned being called brave for not dying.  People tell me it's because of my attitude, for accepting the process and keeping to it.  I just didn't want to die.   I don't think that's brave.   I don't know what to say when people say things like that to me.  

I don't know how to process having lived when so many people I knew didn't.  Who had kids and spouses.. one of my close friends had a new baby.   I don't think I'm brave. I think I was just lucky.

wbcgaruss

koolhandwv said:

HPV recurrence transmittal

10 years ago I had HPV16 head and neck cancer.   It hasn't really been an issue as far as disclosing because I was in a committed relationship at the time and she was with me throught out the entire process.

We've since split up and I find I'm having multiple issues with trying to move on.  One of them being being ashamed of my HPV and upon disclosing it, being rejected.  Or subjected to a litany of questions.  Even more so than I usually get when people ask about the scar on my neck. 

The problem I keep running into is that it really doesn't seem like there's an actual answer to most of them.  Can I still pass it on or has it been flushed from my system as I understand happens for a majority of folks fortunate enough to not develop cancers.

The other issue I have is not related to HPV.. but rather people calling me brave for surviving.  All I can think of is the people who I knew at the time who fought so hard and didn't survive.  I lost 4 people in my circle. I was the only survivor.   All I did was lie on a table and let them irradiate me for 20 min a day for a month and pump chemo into me for 8 hrs at a time for 6 treatments and have a radical neck dissection that has left me in constant pain, ironically an uneeded treatment as there was no viable cancer found.

I don't feel brave.  I don't feel like I earned being called brave for not dying.  People tell me it's because of my attitude, for accepting the process and keeping to it.  I just didn't want to die.   I don't think that's brave.   I don't know what to say when people say things like that to me.  

I don't know how to process having lived when so many people I knew didn't.  Who had kids and spouses.. one of my close friends had a new baby.   I don't think I'm brave. I think I was just lucky.

I Can Comment On the Second Part of your post

 

I can relate to one part of your message about people saying your brave. I think they are trying to congratulate you on getting through something they can’t even imagine or don’t want to think about. I know most of us did not think much about it till we had to and cancer was there.

I’m not sure if people said I was brave but with my recent cancer episode many people said I was strong. I told them it wasn’t me I was weak as it was god’s strength that got me through and that I give all the Glory to God.

 

ERomanO

koolhandwv said:

HPV recurrence transmittal

10 years ago I had HPV16 head and neck cancer.   It hasn't really been an issue as far as disclosing because I was in a committed relationship at the time and she was with me throught out the entire process.

We've since split up and I find I'm having multiple issues with trying to move on.  One of them being being ashamed of my HPV and upon disclosing it, being rejected.  Or subjected to a litany of questions.  Even more so than I usually get when people ask about the scar on my neck. 

The problem I keep running into is that it really doesn't seem like there's an actual answer to most of them.  Can I still pass it on or has it been flushed from my system as I understand happens for a majority of folks fortunate enough to not develop cancers.

The other issue I have is not related to HPV.. but rather people calling me brave for surviving.  All I can think of is the people who I knew at the time who fought so hard and didn't survive.  I lost 4 people in my circle. I was the only survivor.   All I did was lie on a table and let them irradiate me for 20 min a day for a month and pump chemo into me for 8 hrs at a time for 6 treatments and have a radical neck dissection that has left me in constant pain, ironically an uneeded treatment as there was no viable cancer found.

I don't feel brave.  I don't feel like I earned being called brave for not dying.  People tell me it's because of my attitude, for accepting the process and keeping to it.  I just didn't want to die.   I don't think that's brave.   I don't know what to say when people say things like that to me.  

I don't know how to process having lived when so many people I knew didn't.  Who had kids and spouses.. one of my close friends had a new baby.   I don't think I'm brave. I think I was just lucky.

Koolhandwv... Re: the first part of your comment, this general topic has been discussed on this board quite a bit. I have been widowed for 16 years and raising my kids has been my priority, so I have not been in a lot of relationships before my cancer developed. After finding out about my cancer I have been 100% forthcoming on the type of cancer I had (HPV16) and how I probably acquired the virus. I guess I feel that at my age I'm done trying to hide things and feel embarrassed talking about sensitive subjects. It's too stressful trying to do so. I too had questions regaarding my HPV status and how that might affect a future relationship and my oncology docs and the good folks here put my mind at ease about that.  Fast forward to 18 months post Tx and I am now in a relationship again. She is a triage nurse at the same hospital where I was treated (although at a different campus).  When I told her that HPV caused my cancer she simply said "Really? I never heard of that... I'll have to look it up".  I told her what my oncology docs had told me (that I should just go about my life as I have been).  That was when we first met 6 months ago and the last conversation we had on the subject. I actually felt more uncomfortable about having to use Xylamelts and other products to deal with dry mouth, but that discomfort was very short lived.  So none of my cancer-related status has caused any issues with our relationship.  Could it be that I just lucked out meeting a nurse who would underatand the medical aspects of what I have been through? That's very probable, and if our relationship ends it will likely be from some sort of incompatibility and nothing having to do with cancer.

Re: the second part of your comment, I get what you're saying.  I think there are words that are tossed around too freely, like "bravery" or "heroic", etc.  But bravery is in the mind of the beholder... it's all relative, I suppose, and no cause for dscomfort.  But as Russ pointed out, it's more about strength, determination, resolve etc., when dealing with cancer.  Have you ever heard someone pray to God to give them the bravery they need to [insert difficult task here]?  No, they pray for the strength to get them through.  So the next time someone calls you "brave" just smile. offer a polite correction and go about your day.  And don't let surviviors guilt get the best of you. Whether you believe in God's master plan or luck/fate, etc., just remind yourself that it is what it is and go about making your life and the lives of those around you better.

motorcycleguy

I had Epstein Barr,

(Mono ... "kissing disease") caused, Naso Pharyngeal Cancer. I had people ask me about HPV, on this forum, so I asked my ENT Doctor. He said it had nothing to do with my case, and that about 95% of people my age had probably been exposed to HPV.