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HPV P-16 Throat Cancer Survivor-Am I Putting My Sexual Partners At Risk?

caspercamp's picture
caspercamp
Posts: 7
Joined: Dec 2010

I am NED for over 2 years. I was HPV positive P-16 Stage IV throat cancer. I had a tonsillectomy, 35 radiation treatments, chemo, and a modified radical neck dissection. Then the wife filed for divorce. Now, I'm now out on my own entering into my first sexual relationship, post-divorce. The Drs told me I could've been exposed to HPV years ago. They never addressed whether or not I was still HPV contagious? I know that the virus is ever-present but, does that mean I could infect any/every subsequent partner? I can't seem to find an answer anywhere? Obviously, the last thing I would ever do is intenionally expose someone to cancer. I feel like a walking "Suicide Bomber." I will eat a bullet before I sentence someone to cancer. Does anyone know?

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Casper,

HPV in it's 100+ strains is around us. It can live in the skin, it doesn't have to be sexually transmitted. Just like every other virus out there, we are all suseptable to catching or harboring virus' and germs. You could meet someone tomorrow that has it, but more than likely they got it decades ago. I think too you will find that there are a ton of married people who spouse has had a head or neck cancer and the spouse has not. I asked one of our doctors if I had to worry - he said there is no way to tell, that it takes decades before someone could present with an issue, and that they have seen no trends in spouses or partners with a higher incidinence of cancer due to the known exposure. Additionally, most people who care the HPV 16 factor, don't know they have it, it can go for decades without detection.

The answer I think any doctor will stand by is 'we don't know'. Hopefully they learn about a cure, or the world gets inocculated, so many more would not need to suffer what you've been through.

Kari

katenorwood
Posts: 1851
Joined: May 2012

Hey there !

I don't know what age group (generation) you're in.  But this is a subject that has a very simple answer.  No you don't have to give up relations !  But use common sense, know your partner and use protection.  HPV is so preventable in todays society.  Now saying this, I'm talking about STD's.  Can you give someone else cancer....I doubt this very much.  My gosh people still keep me at arms lenghth as if they could catch my adcc.  Weirdo's !  Get back into life, and be positive !  (but....remember what you posted....and use that protection if you have any kind of out break associated w/hpv std"s)  Wishing you the best !    Katie

Editing...I never meant to imply you have any STD's (shoot) my words get ahead of me.  This is just so important for other's in that situation.  No offense meant in any way ! 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Caspercamp... you're not a walking "Suicide Bomber"

You can have HPV and never even know it. It's the same with HSV (Herpes) type 1 or 2. More than 1/3 of the population has it and that's reported cases. The actual number could be more than double the statistics according to many experts. Nearly all people who are sexually active will come in contact or contract an HPV related virus sometime in their lives. 

The actual number of HPV related cancers compared to the number of people who carry the HPV virus is very rare. Even H&N cancers related to HPV are very rare and occur more in men than women. If you have the virus, you're not exposing them to cancer, you're exposing them to the virus. And remember, they could be exposing something to you too!

The bottom line is to use common sense. If you're entering into a sexual relationship you BOTH should be tested for HPV, HSV and other STD's. A frank talk with your potential partner about STD's BEFORE things get heated up is warranted. Is it a really uncomfortable conversation? Ohhh you bet it is but in today's world, it's necessary.

"T"

 

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

Does it really matter....

According to reports and stats, 80% plus of the general population has or will have been exposed to HPV... There is no cure, but usually within a few years a normal healthy body will rid it., sometimes though it can lie dormant for decades before becoming an issue and possible turning into a cancer.

On that same scenario..., we are exposed to all kinds of potentially deadly germs, viruses, etc...routinely. Most of the time they never become an issue.

Even if you are tested as T says..., from my understanding, they would have to become lucky enough to actually hit cells that are contaminated with HPV to detect it... In other words, it's not free floating, they is no test to determine it other than biopsy of the actual infected tissue.

A woman has annual exams that can get tissue (cerivical for example)...that have portential.

But for men, there is no HPV test...

Soooo, back to your original question...

Other than plant some seed in a relationship with someone that more than likely has an 80% chance of already having been exposed to HPV, or substaining from contact...

What's the point of even worrying about it?

Being aware, and informed is important..., but in the long run, I don't think anything is really going to change the potential for exposure or transmission. With HPV, I feel you are going to be exposed, and you are going to transmit it... will it turn into something within you, or someone else... it's pretty much luck of the draw.

JG

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

John,

Sometimes the physical signs of HPV are so obscure one wouldn't even notice. For instance, a genital wart can be so small you wouldn't even notice it or it can hide in a small fold of skin or inside your mouth or throat and you'd never know it's there. Without physical signs or symptoms, how would you know?  They found my HPV while examining the biopsies. Who knows how long I've had it but I never thought I'd be hoping to have an STD!

Your last paragraph is dead on. There is no rhyme or reason to cancer. That being said, it's still wise to breach the subject of STD's with a potential partner and be tested. Even getting tested for your own peace of mind is a wise idea. Remember, while condoms can help prevent the spread of HPV and other STD's, They don't eliminate the risk 100%.

"T"

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

If you are like the rest of us here, the doctors did not "find your HPV."  By examining the biopsies, they found genetic evidence that the tumors themselves were derived as a result of the HPV virus, i.e. they found HPV genetic material inside your tumors.  They did not find active HPV virus.

Deb

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Deb,

Wouldn't that mean I had it at one time in my life? Or can it mean I still have it but it's lying dormant?

"T"

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

Took me a long while to get my head around this. Who is infecting who in a sexual relationship?. Oral sex can be scary when you are a head and neck cancer survivor. I agree with all posters that most humans are already infected or will be infected in their lifetimes. They catch and clear the virus over and over. If you are just kissing someone it's already a mute point.  I also agree that testing isn't real accurate, although men can be tested by scraping the inside of the penis, sounds very painful even if you could find a doctor willing to do the test, it isn't conclusive. Women can be easily tested during a pap smear and some experts even argue that the test is more important than a pap smear, but then again, there is nothing you can do with the result other than a positive result being more apt to indicate future  cervical cancer. This is way out of anyones control, medical professionals included. Life is short as we all know so if you enjoy oral sex don't waste anymore time pondering over it.  

jcortney's picture
jcortney
Posts: 424
Joined: Sep 2012

When I was diagnosed my wife went to her GYN and got tested.  She is negative.  Doesn't mean anything the Doc sais other than she cleared the virus out of her system at one point.  She also made the point that there is no way to know if she or I was the carrier since we have been married for almost 20 years.

 

J.

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

Even more, she was tested cervically... I believe that technically she could theoretically be carrying it somewhere else in her body that wasn't tested, and it's just sitting there waiting to clear, or remain dormant for the rest of her life...

JG

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

My comment of what's the point is...

If by chance they did happen to find cells that were HPV+. There is nothing that could be done to treat or cure it anyways..., there is no cure. Usually by the time you are having any symptoms from something that might have been HPV derived, it's already something else..., more than likely cancer.

So to me, I don't really understand why they would tesat for HPV.

I don't believe they have really definitively determined the exact extent of how HPV is contracted... Yes through contact, but I've heard (read) anything from sexual contact (oral, or whatever), to just deep kissing, or saliva in general.

As for spending time worrying if you are going to infect someone, or them you.... It's pretty much a given, and appears to be so for quite some time. And as mentioned, just because you have become infected, doesn't mean that it's going to eventually turn into anything.

So for me, I see no sense in wasting time worrying about something you have absolutely no control over, or something that could be in your body for decades undetectable.

JG

jcortney's picture
jcortney
Posts: 424
Joined: Sep 2012

Even more telling is that the chances are he is NOT sexually HPV+ at this point.  Just because what I have at the base of my tongue is HPV+ does not mean that I am still carrying the virus.

 

J.

CivilMatt's picture
CivilMatt
Posts: 3007
Joined: May 2012

Caspercamp,

 

Don’t eat a bullet, don’t even think about it.

 

Like has been said, HPV is a  slow grower and it does it’s work down inside the cell where it can not be seen or detected.  This growing stage can take decades before it presents its self.

 

Most people’s immune systems eliminate it, some do not.  There is no easy early detection since you can not see it.  Like a pap smear you would need to take a scraping directly over the infected cells, otherwise you miss it.   Technically, if I had a test for HPV infected cell on my lower tongue (before visible cancerous sore) and had a scrapping to find it and I scrapped along side the infected cell, the test might come back negative for HPV since I did not disturb the infected area.

 

Common warts are a strain of HPV, by looking at your clean hands try to predict where to test for the HPV.  There are areas more common to find cancer and that’s where you look.  Sad thing by the time each of us noticed it, it was cancer.

 

There are some studies looking at certain proteins for early detection, but there are generally  3 or 4 HPV strains normally associated with cancer.. Which ones do you test for?  What about the other 100 HPV strains trying to make a name.

 

Hopefully, my HPV is gone, killed and melted like the wicked witch.  My PET scan says I am clean.  If I pick up another HPV virus it too will probably be a slow grower and age will defeat me first.

 

There is a lot to be learned.  Try to relax.

 

Matt

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

I am so glad this issue is being discussed. My husband died in September after a 20 month battle with HPV+ tonsil cancer that metastacized to his bone and liver. NOT going to happen to you guys!!!

Anyhow, I am a bit haunted sometimes that I gave him the HPV virus. It just looms in the back of my mind that I caused it. That maybe I had it at some point and gave it to him and my body eliminated it but, his virus laid dormant for years and years. This may sound crazy, but it breaks my heart to think I caused his cancer.

Any sane or comforting feedback would be greatly appreciated and therapeutic!

Robinleigh

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

Your hsuband was exposed to HPV by many others, through all sorts of contact, not sexual. The current general statistic is EIGHTY percent of people get the hpv virus but their bodies ably kill and reject. Only a VERY small percentage harbor the virus and it lays dormant for years and then something triggers it to live and grows. It is NOT your fault, you were not the only one to pass it to him. It was his body not being able to reject it that led to this death. PLEASE LET IT GO!

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

I appreciate this feedback! There is the reality of "survivor's guilt" and I think this lurking thought is just part of a process for me. I know Andy would not want me to carry that thought with me but, we caregivers try so hard to "fix" everything and search for answers to this dreadful disease. It is such a blessing to have this forum to be able to openly talk about such personal matters.

I wish all of you continued health and clear scans. You are kind to allow me to pose questions that are more related to grief!

 

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Robinleigh, this was absolutely not your fault.  It is all a part of the mysterious way that life works. We have no control, and only limited understanding.  Hugs to you.

Deb

 

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

There is absolutely no way of ever knowing how your husband came to have HPV... For that matter, he could have had it and you been infected. It could have come form anyone over decades...   

Again, it doesn't really matter in the big picture, we all are exposed to different things daily...usually we reject them, sometimes we don't.

Even like mentioned, just having been exposed to HPV is in no way a given to become cancer... Many things must come into play, totally out of any of our control, before it turns into cancer.

Live life, remember the good times, and feel no guilt at all... I'm sure that is what your husband would want you to carry forth..

Prayers,

John 

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

I so appreciate your wise words. I will re-read this thread often...for the facts of HPV exposure and the kind spirit you pass on.

faithful65
Posts: 10
Joined: Dec 2013

I was diagnosed with SCC in my tonsil (HPV 16) last Friday, one week ago.  Since then my life has been turned upside down.  I confessed an extramarital affair to my wife which for all intents and purposes seems the most likely manner in which I contracted the virus as otherwise my wife and  have been faithful to each other sexually speaking.  I don't know what the future holds regarding our marriage, we are currently living in separate bedrooms and trying to come to grips with reality.  Today I see my oncologist for the first time and my wife will be with me.  At this point I am more concerned with her being found HPV positive and the possibility of her getting cervical cancer than what I am facing. 

Any words of wisdom regarding what I am facing would be greatly appreciated.

 

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

You might want to start a new thread, as this one is a little dated, but that's your choice.

As for confessing..., while it's probably the moral thing to do..., probably the timing isn't the best for you, or your wife actually.

If you read above, there is absolutely no way of determing how you got HPV... It could have been from someone decades ago, your affair, or even your wife from someone prior to you...

The only instance that would probably rule out both you and your wife would be if you were both virgins and neither have been sexual with anyone. That would more than likely satisfy your concerns on where and how you became infected.

As for your wife having it from you... The only place that can be tested, other than if she has something going on elsewhere, would be through her pap smear/cervical tissue from routine testing.

She could have it anywhere and it never show in a test, same with you... It's fairly local to the infected area..., and there isn't any overall test to determine if you are infected..., tissue only (as far as I am aware).

 

Again, from above..., at this point it doesn't really matter the how, when or who...

You main concern is to get through the next six months or so as best you can... Trying to deal with all of the cancer crap, and on top of that a damaged relationship is going to be tough. But unfortunately your life and survival is primary. The other stuff while important, is going to be there one way or another..., if you aren't, it isn't going to matter..., so work on yourself.

Hopefully you and your wife can work through the other at the same time. You are definitely going to need support, and worrying about other things isn't going to help you at all.

As for what you are facing treatment wise...

Surgery, Chemo and radiation..., a combination of any of those either singularly or combined...

A large portinon of us, myself included as I was STGIII SCC Tonsils and a lymphnode HPV+, we treated similarly.

For me that was having the tonsils removed, a power port inserted (for chemo induction)... You may or may not have a PEG inserted (feeding tube) for calorie and liquid intake. Possibly 1 - 4 typed of chemo (I had four), and possible radiation, usually 35 days at 10 - 15 minutes each day..., bolted to a table with a mesh mask strapped to your face and neck.

Eating around the 4 - 12 week of rads and post will be nearly impossible....

But you get through it, we all have..., and most fairly successfully... My diagnosis was January 2009..., nearly five years ago, and I've been clean since, regained all taste and nearly all saliva with very little long term effects.

Some aren't as fortunate, but many are....

You have found an excellent resource in this site, the people here are awesome...survivors..., you will be also.

Best,

John

 

 

KB56's picture
KB56
Posts: 255
Joined: Apr 2013

You have a very tough battle ahead of you so you need to prepare for the fight and you will have your good days and bad days but you can make it.     Get mentally prepared, stay positive and get ready for battle because that's what you are gearing up for:

1) go to the dentist and get a complete checkup and get a fluoride tray that you will use every night, for a very long time.   The radiation will really impact your saliva glands which are key to good dental health ( as well as many other things but keeping your teeth is key and a fluoride tray will help)

2) get the PEG tube.  I didn't like it but I lost 30 pounds with it and was in good shape going into the treatment and didn't have 30 pounds to spare.  It wil help you get the nutrition you MUST have, it will help you keep hydrated which is key and you can take the variety of medicines you will be on and off as you fight through this bump in the road of life.   meet with a nutritionist (sp?) and get the plan mapped out of how what you will need from calories, protein, hydration and fiber (don't forget the fiber).  I couldn't handle the volume of gravity fed via the tube so I had to get a pump to input the food slower.   

3) you will probably have Erbitux as your chemo drug and it much less toxic than the older chemo drugs but is very effective against HPV type cancers.   The bad side effect is acne but it will start to clear up before you finish treatments.   Not desirable but much less side effects than older chemo drugs.  

4). The radiation is brutal and there is no sugarcoating it.  For me that was the toughest thing by far but it is also what saved my life as my cancer started in the right tonsil and had mestasized (sp?) to the lymph nodes in my neck and was wrapped all the critical stuff running between your brain and body so mine was inoperable.   The radiation oncologist will do what they can to only radiate the area that needs it (saving saliva glands, etc where possible) and will treat the symptoms you develop along the way.   Rinsing with baking soda and salt will really help as you go through radiation

5) this site and the people on this site can really help as you go through this.  You are not alone and you have your friends and family to lean on as well.   The advice from someone who has walked in your shoes so helpful and comforting.   Everyone is different and everyone reacts differently to the treatment you will get along the way.  For me the radiation was really tough and the tonsillectomy hurt like hell.   my ENT wanted the tonsillectomy to heal 3 weeks before I could start radiation or chemo.  

6). There is a site (caringbridge.org) where you can keEP all of your friends and family informed of what you are going through, how you feel, etc.     it's actually therapeutic to keep the journal and will help your wife/family as you get to tell your friends and family vs everyone calling her all the time for updates ( that will happen too).   friends and family can send you words of encouragement, support back to you as well.  

The good news is that it is an HPV type cancer and the long term survival rates, and your likelihood of beating this and living a full and normal life is excellent.     You have a very tough few month ahead of you but stay positive and fight like hell.     

 

Good luck and if you need any of us we are here for support and to let you know what we felt and how we dealt with some of the symptoms along the way.  Since you are at the beginning of your journey I'm sure you are a little scared (normal), anxious (normal) and not sure what to expect over the next few months(normal).    Sorry for the lenght of this reply buti was in your exact shoes on April 1st, 2013 so it's all very fresh in my memory.    Here I am 6 month from my last treatment and have had 2 clean scans and feeling better every day (I really feel good now)!   Still dealing with a few side effects of the radiation but life is good and I'm looking g forward to,the future.   

 

Skiffin16's picture
Skiffin16
Posts: 8094
Joined: Sep 2009

At six months you are getting there....

When you are completely back in the groove, you will no longer be "normal"..., you will have achieved the higher level of "Abi-Normal"..., LOL.

Best,

John

PJ47's picture
PJ47
Posts: 334
Joined: Sep 2013

One of the first things I did when my biopsy came back HPV 16+ was to get him to an ENT for the scope to examine his throat and base of tongue.  He was fine, but had been clearing his throat a lot and had some trouble swallowing bread at times.

Encourage spouses to get checked by ENT and OBGYN.   HPV can even be transmitted by kissing.  

I think mine was dormant for many years and then in my 6th decade, my immune system simply did not work as well to keep it in check.  SCC is also linked to the (mono) Epstein Barr virus which I also had when I was 16. I believe we have many exposures to many external toxins and viruses and at some point the immune system simply is overwhelmed or just declines with age and then the cancer has an opportunity to grow.

 

Good luck and take care,

PJ

 

donfoo's picture
donfoo
Posts: 1270
Joined: Dec 2012

Welcome to CSN. Very sorry to hear about the SCC diagnosis. That is usually the most folks deal with around here. It is going to take all the energy and focus and will power you have to get through the treatments. We can help guide you here on that. Hopefully your partner will be your caregiver and getting through this ordeal together can help bury the past and offer renewed hope for the future.

You might need a backup plan for support during your treatments and recovery; someone who assists or acts as your primary caregiver. Hopefully, you can reach out to others who may be able to transport you to treatments, pick up meds, run to the drugstore, etc. if/when you are not up to it.

Take care,

don

 

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