Stigma Around HPV Tonsil Cancer

AlreadyOne

Just wondering if anyone else feels a stigma surrounding HPV related tonsil cancer. I feel awkward when I tell people that I was diagnosed with this cancer. If cervical HPV cancer is caused by intercourse, how is HPV tonsil cancer caused. I always tell people not to jump to conclusions. I am a 60 year old female. Does anyone else think about this?

Dean54

I don't worry about it

My ENT said it could actually be caught thru deep french kissing and figure if anybody judges me negatively, it's their problem not mine. It's actually better than having non-hpv throat cancer from what I've read. I'm just glad to be alive at this point.

CivilMatt

stigma is a bad side effect

AO,

You do not have to tell people it is HPV cancer. Mine was Stage IVa, Squamous Cell Carcinoma, base of Tongue.  I do not need to tell them it was HPV+, I do not need to tell them it was in one lymph node,  I do not need to tell them I had surgery, radiation and Erbitux.

It is generally accepted by many that oral sex is the link. It is the similarity in the cell type of the mouth, tongue and tonsil with the lady parts which is the key. I am trying to be discrete (don’t jump to conclusions).

I am 61 years old and I wonder why my immune system wasn’t on better patrol instead of sleeping with the enemy.  It happened, I wish it had not, and there is nothing to do about it, but move on. As awful and embarrassing as it is, it is probably better to mark the spot and live with it.

Matt

 

corleone

nasopharyngeal carcinoma and EBV

Well, I had a different head and neck cancer, nasopharyngeal carcinoma. This too is caused by a virus, Epstein–Barr virus (EBV), also known as human herpesvirus 4.

Do you know what other diseases causes EBV? Mononucleosis, which is colloquially known as "the kissing disease”.

Now what, would I need to be embarrassed? Nope, don’t think so, because you know what? Nearly 95% of people have had an EBV infection by the time they are adults.

The point is – it’s not the virus itself, but a combination of factors that trigger cancer (genetics plays an important role).

debbiel0

CivilMatt said:

stigma is a bad side effect

AO,

You do not have to tell people it is HPV cancer. Mine was Stage IVa, Squamous Cell Carcinoma, base of Tongue.  I do not need to tell them it was HPV+, I do not need to tell them it was in one lymph node,  I do not need to tell them I had surgery, radiation and Erbitux.

It is generally accepted by many that oral sex is the link. It is the similarity in the cell type of the mouth, tongue and tonsil with the lady parts which is the key. I am trying to be discrete (don’t jump to conclusions).

I am 61 years old and I wonder why my immune system wasn’t on better patrol instead of sleeping with the enemy.  It happened, I wish it had not, and there is nothing to do about it, but move on. As awful and embarrassing as it is, it is probably better to mark the spot and live with it.

Matt

 

I am also in my 60's and was

I am also in my 60's and was worried about how to tell my family and friends, especially my sons. At first I only mentioned SCC tonsil cancer.  After I got over the numbness and reality set in, I realized I had a chance to possibly prevent this from happening to someone else. I started telling everyone, that wanted to listen, that my cancer was HPV16. There is a vaccine available for young people, that may help prevention. I have encouraged my friends, sisters, colleagues to tell there children, grandchildren, nieces and nephews  to check in to it and have the conversation.  You never know, I may have prevented my grandson from having to go down this nasty road.

AnotherSurvivor

This is a semi-recurring

This is a semi-recurring theme here.  I offer my usual response that I am unembarrassed by the desease, but more than bothered by the lack of any epidemiological study that make a causal oral sex connection.  The best explanation I ever get is that regardless of the cause the course of treatement and standard of care doesn't change.   

katlou

HPV negative but...

I had a small stage 1 SCC of tongue and have so far only had to have wide re-excision a few months ago with no other treatment.  Mine is HPV negative but even with the negative status I feel somewhat stigmatized because of things that I have read about what causes these HPV negative oral cancers.  Smoking and drinking alcohol seem to be the main risk factors.   I will admit that I was a light smoker for a few years but quit over 20 years ago.  Although not everyone who has this type of cancer has had any of these risk factors (some of them here on the H&N discussion board) I still feel uncomfortable and have been concerned about judgment from people.  My approach has been to tell some people I have a head and neck type of cancer without going into the details and others whom I trust I have told what type of cancer I have.

CivilMatt

katlou said:

HPV negative but...

I had a small stage 1 SCC of tongue and have so far only had to have wide re-excision a few months ago with no other treatment.  Mine is HPV negative but even with the negative status I feel somewhat stigmatized because of things that I have read about what causes these HPV negative oral cancers.  Smoking and drinking alcohol seem to be the main risk factors.   I will admit that I was a light smoker for a few years but quit over 20 years ago.  Although not everyone who has this type of cancer has had any of these risk factors (some of them here on the H&N discussion board) I still feel uncomfortable and have been concerned about judgment from people.  My approach has been to tell some people I have a head and neck type of cancer without going into the details and others whom I trust I have told what type of cancer I have.

Smoking is allowed in Matt's H&N forum

katlou,

Let me try to understand, you are stigmatized because the causes of (your) oral cancer (not attributable to being HPV+) are worse or more awful, or frowned on, by (I guess) people who know you.  That somehow HPV+ brings an air legitimacy to the cancer round table. 

I must have accidentally slept on my radiation soft spot last night, but there is nothing to feel down or be depressed or stigmatized about (I will go out on a limb) contracting any type cancer.  What are you saying?  You most likely do not know what caused your cancer, unless you are a long time Russian Cosmonaut or spent too much time at the Fukushima Dai-Ichi nuclear plant in Japan, you don’t know for sure what caused it. If you were a cosmonaut or a scientist trying to save Japan, that is pretty cool and might be a good answer.  Now that I have taken the time to respond and think over your dilemma, you may be correct and drinking alcohol or smoking cigarettes (I assumed cigarettes, you said light smoker) may put you under the high intensity stigma lights (forgive and bear with me).

As I remember, in December you had trouble with your doctor and their wait and see approach to your treatment, then you were hassled by someone or the hospital about your scans and finally I mentioned to you that just about everyone on, in, around the H&N forum would love to have found and treated their cancer at stage I, as you have.

Don’t take any guff off anyone about how or why you have cancer.  This is terrible stuff and people will blame you for getting the cancer, heck I blame me too (but for different reasons).  As they say, “many people are a horse’s ****” and you don’t need their condescension.

Now take this little piece of advice and put it in a pipe and smoke it (this must be H&N forum after hours).

Matt

whoisjohngalt

CivilMatt said:

Smoking is allowed in Matt's H&N forum

katlou,

Let me try to understand, you are stigmatized because the causes of (your) oral cancer (not attributable to being HPV+) are worse or more awful, or frowned on, by (I guess) people who know you.  That somehow HPV+ brings an air legitimacy to the cancer round table. 

I must have accidentally slept on my radiation soft spot last night, but there is nothing to feel down or be depressed or stigmatized about (I will go out on a limb) contracting any type cancer.  What are you saying?  You most likely do not know what caused your cancer, unless you are a long time Russian Cosmonaut or spent too much time at the Fukushima Dai-Ichi nuclear plant in Japan, you don’t know for sure what caused it. If you were a cosmonaut or a scientist trying to save Japan, that is pretty cool and might be a good answer.  Now that I have taken the time to respond and think over your dilemma, you may be correct and drinking alcohol or smoking cigarettes (I assumed cigarettes, you said light smoker) may put you under the high intensity stigma lights (forgive and bear with me).

As I remember, in December you had trouble with your doctor and their wait and see approach to your treatment, then you were hassled by someone or the hospital about your scans and finally I mentioned to you that just about everyone on, in, around the H&N forum would love to have found and treated their cancer at stage I, as you have.

Don’t take any guff off anyone about how or why you have cancer.  This is terrible stuff and people will blame you for getting the cancer, heck I blame me too (but for different reasons).  As they say, “many people are a horse’s ****” and you don’t need their condescension.

Now take this little piece of advice and put it in a pipe and smoke it (this must be H&N forum after hours).

Matt

CivilMatt

You have such an interesting way with words, and always make me chuckle!

OKCnative

I've discussed this in the

I've discussed this in the past here too.

I've always been very open about my cancer and HPV+ link. So open in fact that the people around me feel very comfortable talking to me about it. My closest friends even joke with me. Being 47 when I was diagnosed my oncologist said I most likely came into contact with HPV in my teens or college years. 

But, I grew up talking about this sort of stuff. In high school I helped start what became the National Teen Hotline and I also was the youngest person in Oklahoma (in the 80's as a heterosexual no less) to be certified as an HIV/AIDS counselor, tester and educator. So, I'm pretty used to talking about just about anything.

I use my example as a way to educate people about getting checked for the disease and getting their kids vaccinated. 

That said, I know people who are ashamed and will not tell people the cause was most likely HPV. Considering virtually everyone will come into contact with HPV in their life, I don't get the stigma.

Billie67

so it was assumed that my

so it was assumed that my cancer was HPV as well and it grossed me out. My doctor told me that as "gross" as I might think it to be, its actually one of the most successfully killed cancers, (He meant cured but he was being flip with me). He ran so many tests and none of the strains for HPV were a hit. There are so many strains. Now I found myself wishing it were HPV because of the whole statisics with cure. It appears my cancer was from second hand smoke as my tumor had some nicotine derivatives in it. 

So I have a confession to make...I've actually lied a couple of times and said it was HPV...don't judge LOL I had good reason. I was talking with a few moms of teens and they were discussing the vaccine and to get it or not. Then a couple of them said that they were not going to risk the vaccine because the chances of getting cancer are very rare and they could find it with a papsmear easily. I chimed in with the whole throat cancer thing. They said, "well that is even more rare" I informed them otherwise. They still didn't believe me. So I aksed them why they thought my voice was so raspy? Why did they think my neck was so discolored? They finally started to listen. I told them that even if it is rare to get cancer(but its really not that rare)that the treatment for HPV related Head and Neck cancer is brutal! There are life long side affects and some people do not make it. 

So I might have lied but it was for their own good :-) It scares me that so many are so misinformed. Some parents even suggest that they will just tell their kids to not have sex or to always use protection so they won't get it. Uuummmm OK. Not all kids are going to listen to that! What do we parents know?

Ok, thats my story and I'm sticking to it! 

SuzJ

My ENT said..

He said that HPV caused cancer, is the biggest upswing of cancers to date, almost epidemic proportions.

 

Now, if you have a chance to get your child vaccinated, why wouldn't you?? If you could potentially stop pain and suffering?

 

I am currently training a noobie at work, omg, anyways, she asked about my scar, and Im not ashamed of having it, it happened, so what?

 

So we are in Panera Bread, and she says in a loud voice.. "omg a sexually transmitted disease???" That was the first time I wanted to kill her, the second was when her dumb **** said.. "HIV???"

 

I'd rather people were educated and could do something before it was too late, than sit back.

AnotherSurvivor

Sorry, that's funny.

Sorry, that's funny.

Did a 3 week walking tour of parts of W.Europe last month.  +10 miles a day, lots of bread, cheese, sausage, wine, with the occasional budget buster.   Came back 1 pound under target weight.   I grant you the program is extreme, but as an approach to  weightloss it is the only one I have found that lasts.  We will see how Generation Smug deals when their metabolism slows.

stevenpepe

People are just strange,

People are just strange, judgemental, fearful of the unknown, and just plain stupid. I could care less what they think.

I am a HPV-negative tongue and neck cancer survivor. I went through mini-hell in 2016 so for me, anyone who judges me can suck a lemon. I have a light smoking past and stopped 25 years prior to diagnosis, so I am one of those outliers that probably shouldn't have been struck with cancer. But I was and that's all there is to it.

Fortunately, no one has made any stupid remarks to my face but one woman asked my brother if I had a dirty mouth. In other words, did I curse a lot or something because that can cause mouth cancer. Ridiculous.

Now you know why I could care less what people think.

stevenpepe

Billie67 said:

so it was assumed that my

so it was assumed that my cancer was HPV as well and it grossed me out. My doctor told me that as "gross" as I might think it to be, its actually one of the most successfully killed cancers, (He meant cured but he was being flip with me). He ran so many tests and none of the strains for HPV were a hit. There are so many strains. Now I found myself wishing it were HPV because of the whole statisics with cure. It appears my cancer was from second hand smoke as my tumor had some nicotine derivatives in it. 

So I have a confession to make...I've actually lied a couple of times and said it was HPV...don't judge LOL I had good reason. I was talking with a few moms of teens and they were discussing the vaccine and to get it or not. Then a couple of them said that they were not going to risk the vaccine because the chances of getting cancer are very rare and they could find it with a papsmear easily. I chimed in with the whole throat cancer thing. They said, "well that is even more rare" I informed them otherwise. They still didn't believe me. So I aksed them why they thought my voice was so raspy? Why did they think my neck was so discolored? They finally started to listen. I told them that even if it is rare to get cancer(but its really not that rare)that the treatment for HPV related Head and Neck cancer is brutal! There are life long side affects and some people do not make it. 

So I might have lied but it was for their own good :-) It scares me that so many are so misinformed. Some parents even suggest that they will just tell their kids to not have sex or to always use protection so they won't get it. Uuummmm OK. Not all kids are going to listen to that! What do we parents know?

Ok, thats my story and I'm sticking to it! 

As a 51 year old and parent

As a 51 year old and parent of three, I've learned that people are going to make their mistakes in life, regardless of our intentions to teach them better. It's just human nature. Nice story!

swopoe

stevenpepe said:

People are just strange,

People are just strange, judgemental, fearful of the unknown, and just plain stupid. I could care less what they think.

I am a HPV-negative tongue and neck cancer survivor. I went through mini-hell in 2016 so for me, anyone who judges me can suck a lemon. I have a light smoking past and stopped 25 years prior to diagnosis, so I am one of those outliers that probably shouldn't have been struck with cancer. But I was and that's all there is to it.

Fortunately, no one has made any stupid remarks to my face but one woman asked my brother if I had a dirty mouth. In other words, did I curse a lot or something because that can cause mouth cancer. Ridiculous.

Now you know why I could care less what people think.

My husband had HPV- tongue

My husband had HPV- tongue cancer too. There is a stigma around all of it. Very uncool. Glad to see you back around Steven. Best wishes.

Billie67

stevenpepe said:

As a 51 year old and parent

As a 51 year old and parent of three, I've learned that people are going to make their mistakes in life, regardless of our intentions to teach them better. It's just human nature. Nice story!

I agree but I can‘t help

I agree but I can‘t help myself when the opportunity presents 

Billie67

SuzJ said:

My ENT said..

He said that HPV caused cancer, is the biggest upswing of cancers to date, almost epidemic proportions.

 

Now, if you have a chance to get your child vaccinated, why wouldn't you?? If you could potentially stop pain and suffering?

 

I am currently training a noobie at work, omg, anyways, she asked about my scar, and Im not ashamed of having it, it happened, so what?

 

So we are in Panera Bread, and she says in a loud voice.. "omg a sexually transmitted disease???" That was the first time I wanted to kill her, the second was when her dumb **** said.. "HIV???"

 

I'd rather people were educated and could do something before it was too late, than sit back.

Amen to that

Amen to that

Billie67

stevenpepe said:

People are just strange,

People are just strange, judgemental, fearful of the unknown, and just plain stupid. I could care less what they think.

I am a HPV-negative tongue and neck cancer survivor. I went through mini-hell in 2016 so for me, anyone who judges me can suck a lemon. I have a light smoking past and stopped 25 years prior to diagnosis, so I am one of those outliers that probably shouldn't have been struck with cancer. But I was and that's all there is to it.

Fortunately, no one has made any stupid remarks to my face but one woman asked my brother if I had a dirty mouth. In other words, did I curse a lot or something because that can cause mouth cancer. Ridiculous.

Now you know why I could care less what people think.

People are really really

People are really really stupid yet most of them think they know better than we do. I have one “friend” who said to me, “what would you think if I told you that you could have skipped all of that chemo and damaging radiation and still beat cancer?”  UGH

She’s also the same one that told my that my Type 1 diabetic son (insulin dependant) son could forgo his insulin if he would only commit to an all raw diet! 

Uummm, Type 1 diabetic, look it up lady!!!

Tonita

I had stage one SCC not HPV

I had stage one SCC not HPV but I smoked.  There is a stigma with that too.  My doctor said I brought it on myself.  How's that?

stevenpepe

swopoe said:

My husband had HPV- tongue

My husband had HPV- tongue cancer too. There is a stigma around all of it. Very uncool. Glad to see you back around Steven. Best wishes.

Glad to still be here! I hope

Glad to still be here! I hope you're well.