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

faithful65 said:

Just Getting Started

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.

 

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.   

KB56 said:

Just getting started

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.   

 

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

Does anyone know of husband and wife both getting throat cancer?

In 2005 my wife was diagnosed with stage 4 squamouscell carcinoma in her gum and jaw bone. She had a radical surgery to remove the jawbone, reconstruction followed by radiation treatments. She has never smoked and rarely drinks. I do not remember the HPV virus being brought up during the diagnosis stage. I was diagnosed in June of this year. Doctors said it was definentely HPV related. I was diagnosed with stage 2 squamouscell. Had a 2cm tumor at the BOT. It was removed along with 33 lymphnodes on August 5th. I begin radiation in two weeks.

Skiffin16 said:

Welcome...

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

 

 

Hi John

YOu say you have been clean for 5 years. I am coming up on my 1 year PET scan after my previous 6 month was clean. During your 5 yearts have you had sexual realtionships or are you celibate now? Any advice

I'm gonna get real here so I hope this doensn't offend anyone..

Please, don't take another persons word for it! Ask a DR! Make an appt. Write down your questions and go ask the pro. Someones life may depend on it. Find an expert on it. Not just your MD.  I had it too. I also had the WORLDS leading expert on HPV at M D Anderson. I made a list of questions and wrote down his answers and here is what he said.

Yes, you can infect others if it is active in your body at the time of relations but no one seems to know what the "active" symptoms are.. They say there are no symptoms and I beg to differ. I have to say that before I was diagnosed for a solid year I had flu like symptoms every 3 months. I would have fevers, body aches, coughing, congestion etc. I felt horrible! So run down from it every 3 months.. 

There are over 100 different strains of HPV however only 5 that they know of can cause cancer.  Even a condom may not be enough because the liquid a woman creates during sex has the germs in it. Hence throat cancer! There is a blood test for it. However again from the way I understood it, it has to be active in your body at the time. If it isn't it won't show up. My OBGYN also tests for it when I have my yearly pap smear. Not a blood test but a smear.

According to MD Anderson there is so much misinformation on the net. Don't read it!!!!!! I hadn't had sex for 3 years and came down with it when I was 55. So what does that tell us? When I was 19 I was diagnosed with "precervical" cancer which is caused by HPV. I had a procedure where they freeze your cervix and it supposedly was gone. Look how many decades it took to show back up. It is a virus and in most people it runs it course and the body heals itself and gets rid of it. Like any virus. Like the chickenpox. You got the virus. It ran its course and it leaves.. However years later it can return in the form of shingles. There is so much they still don't know. You can be reinfected with the same strain by a different person.

They are not even sure if it can be passed by kissing... KISSING!!! The last thing MDA and I said was this: Can I spread it via sex? He said not unless its active in your body... But.... We don't know everything about it. That freaked me out so bad that I haven't dated since. My question is------- How do you have that conversation with someone because if I had another relationship where it was going to become intimate, I feel I need to tell them upfront first and let them decide. If I didn't tell them and they got it and got sick I could never forgive myself. So how do you have that converstion and when? At what point in your new relationship do you tell them? This is why I don't date. It's been 5 yrs. since treatment and now I'm getting to the point of wanting to date again. It's scary to say the least. I'm not gonna not tell them and take someone elses life in my hands to decide. It has to be up to them...

Again, I certainly don't have all the answers but I just want to reiterate to not accept answers from a non medical community. If I was dating someone I was intimate with and they told me after the fact..... That is unforgiveable!

robinleigh said:

fragile subject for me

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

Please PLEASE dont go there. You did not cause his disease. Even if you were the one who gave it to him you didnt do it on purpose did you? Think of this logically. I'm sure you would have done anything to save him. It is one of the nastier cancers. MD Anderson told me it is the most brutal one of all if in the throat just due to the nature of where the treatment is therefore since he obviously had advanced cancer at least hes no longer suffering!

My situation is Im single and I know Ive had it. I havent dated anyone since I had it. I honestly dont know how I'm going to navigate this. As I mentioned in another email on this link, how/when do you have this conversation? Tell em too early and they may run and I wouldnt blame them. Wait too long and they may feel tricked. I just dont know how to do this. It sucks and for all the men out there on this particular link saying dont worry about it.... They are the ones who spread it. They should be ashamed. This kills people.

I feel your pain Robin.. Bless you. Try hard not to think that way. He wouldnt want that for you I'm sure and you are doing yourself a great disservice letting that sink into your mind. It's wrong.... Let it go.

I am writting with regard to assist a fellow cancer survivor of  Head/Neck Cancer.  Could exposer to the 911 clean up site after 911 taking pictures cause cancer?   I was told that Head and neck was one of the prominent results of such exposer. After a few years after spending time in that area there was a diagnoses  with HPV 16 positive Head/Neck Cancer and he wants to know which could be the cause of the Cancer.  Could it be the HPV 16 or the 911 exposure  or both.   He never experienced any systems of the HPV 16 Cancer, just went into the doctor for an exam and found out his neck lymphnodes were Cancerous.   Since the Lymphnodes serve as a filter the infected cells could have came from anywhere in the body.  

Any thoughts on which culpret could be the causeative agent of the  squamous cell carcinoma of the oropharynx?

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. This is a good point, "it isn't detected early".

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.  There are no early detection tests, yet.

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

I was diagnosed in 2016 with HPV16+ on left tonsil skin, no lymph, they though possible BOT but was ruled out, Stage 2.  I traveled for 3 yrs with husband throughout areas of Europe, felt fine, high energy, walked at least 5-8 miles a day.  Ate, drank great wine & yes smoked.  No issues except when home here in Subtropical area of FLorida allergies would flare & Id have a dry cough & it would give Me a sore throat.  Asked every Dr & Dentist what it was & told not to worry about it, just irritated from cough.  Did get a bad cold from fellow travel mate probably from hrs riding by car to different Countries.  Cold month we both had coughs & sore throats.  Otherwise We just marched onward.  Finally beginning of 2016 finally saw an ENT for allergies.  After scoping Me numerous times spot got red and he brought it up & asked if he could biopsy it.  Sure been asking but other Drs said no big thing.  Came back Cancer.  He than asked if he could test for HPV, OK.  DX 16+.  I explained situation about 3 yrs, no Dr was worried.  Well pushed Me into treatments with No other info nor did either My Rad or Chemo Drs.   Never got the chance for 2nd opinion.  No research, time was limited to start NOW.  Now addressing who's fault did ask ENT since married almost 35 yrs yrs but was told can live dormant for 20-30 yrs before it rears it's ugly head.  How can you blame.  My husband, Me, an ex boyfriend in college.  Like Forest Gump said "**** Happens".  I'm more upset with how it was aggressiveply treated and has caused Me 4 Cancer free yrs but so many horrific side effects from over Radiations & 2 Chemo drugs.  Totally messed up My body.  No quality of life!  No saliva at all now, throat constantly dry & sore, getting hard to even talk long.  was told by many Drs was over radiated.  Was burnt down to collar bones.  So many sores in mouth from Chemo plus radiation burns.  So yes **** Happens.  No blame who gave Me the Virus, paps always clean whole life, but blame can be placed on Drs who don't take patient into consideration.  Was never asked how I wanted to handle this, given time to research, understand get 2nd opinion.  Their way only.  I agree Would have conversation if ever was in that situation of new relationship.  If anything to give them info to make their own decision.  To Me that is was is important.  Just being informed.  I try to educate as many young people who have No idea what HPV is & many my age.  Knowledge gives you the ability to make the best decision for you.  Anything from there is your decision, not forced on you.  Be upfront, be honest, would make this whole world a better place.  Educate!  Just My little 2 cents.  And please don't blame yourself for possibly giving it to your husband.  Please, no need to beat your self up for something both of you knew nothing about.  He'd want you to go on and live a full life happy, all I wish for My husband.  Often wish I would die & let him fly again.  Travel, Do the things We planned that I can't do now.  Have too many medical side effects from treatments, I can't but be happy, live life!  Tho will say I miss traveling & soooooo many foods I will never be able to eat again.  I miss being able to do basic things around house & taking care of myself.  No good testing yet for HPV, so it's a crap shoot who has it but Drs know when they overdo or there are problems from treatments I can read them from blood tests, CTs, but never acknowledged, that IS their fault, but No blame on HPV.  No way to know.  Already 2 friends who have died from overdoing treatments, 1 will be shortly.  There is fault there.  But no way to know Who has active HPV in throat except if there is symptoms apparent & biopside on direct area.  Knowledge, Education.