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HPV and throat cancer

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

I've tried to research this subject to get some answers with no luck. My hubby (Buzz) was diagnosed with BOT cancer in August. In 2001 he had R tonsil cancer with 2 nodes involved. He had a radical neck dissection on the right and tonsillectomy. This new cancer is a "new primary". Buzz is a non-smoker. The tumor was not tested for HPV. What I am wondering is how long does it take to develop throat cancer after HPV exposure? Can someone have the infection, not know it, not develop any cell changes, and yet pass it on to others?

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

John has a great link about this on HPV Information; from what I read it can be in someone system for many years before showing up

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

I agree, that from what I have read, and especially if they are thinking it might be sexually derived. It would have to have lain dormant in me or my wife for 20+ years before becoming active.

I really believe that we are exposed to cancer, HPV and various other potentially harmful bugs daily. It's just the luck of the draw at the time whether or not they become active, things such as health, stress, fatigue, etc. That might cause your immune system to become weak, allowing the bug to take hold.

I found a very informative site on HPV Information, thought I'd share for those interested;

HPV Information

One of the articles even mentions a possible cure for HPV...

Best,
John

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Let me first start by saying how sorry i am that your husbands cancer has returned. :(

My doctors think the exposure could have happened 10-20 years ago; but i don't think they know. Look at young women who have had cell dysplasia from hpv related pap smears in there early 20's; there exposure had to have happened sooner. Truth is they don't know how fast is turns or why it turns in some and goes away in others. Some say multiple exposures to it- like you get it, it goes away, you get it goes away then eventually it turns to cancer instead of clearing.

I'm curios did your husband have radiation and chemo back in 2001 when he had the tonsillectomy and neck dissection? If yes then it would be interesting to know what treatment options he was given now?

Overall, this has been my main concern. I'm assuming that the intial cancer in 2001 was HPV derived and it's unfortuante that we will never know. It also would be nice to know if this newprimary is HPV related also!! Assuming that both tumors were caused by HPV; I wonder if the cancer was caused by the HPV reoccurring or was it related to a new exposure?? The doctors really do not know this information at this point. I do know that the hpv virus lies dorment like the herpes virus. So my concern is if and when the HPV has a reoccurence will it cause cell dysplasia again and turn into cancer again!!! That is the scary part. Also, people that say there partners don't have it can't be certain. Gynecologists are just doing pap-smears they aren't doing swabs of the complete anatomy; also they aren't swabbing our mouths or our partners mouths!! That's why I will never believe in the 2 year rule/ 5 year rule, NED free ect.!!! :( Best of luck!!!

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

Buzz had radiation in 2001 after neck dissection. I can't understand how this cancer struck again in a radiated area! Not knowing if either one of his cancers were hpv caused, I should not tormet myself about this but I have to wonder if it is my fault. I have never had a positive pap smear but I understand that some people have the infection and get over it without getting cancer. We have been married and monogamous for 37 years!

nifty's picture
nifty
Posts: 12
Joined: Nov 2010

Hi - Approx. 60% of the population with cancer has HPV. Mouth and neck cancer, anal and cervical cancer are the most common cancers in which people test positive for HPV. It is entirely possible to go your entire life with HPV and have no symptoms and/or not get cancer. It is a risk factor, but not a guaranteed cause by any stretch. A very large part of the population has HPV, and does not get cancer. From what I have read, if you do test positive for HPV the outcome of your treatment is more optimistic in many cases - however it does not alter the recommended treatment plan.

I wish you and your hubby all the best luck.

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

It is nobody's fauly, don't blame yourself or anyone else...it is what ot is. Everyone or a very large majority are exposed to both cancer and HPV cells, along with a mirad of other potentially harmful health related germs....

Sometimes they turn on, most times they don't....

Several things or situations can lead to them becoming active or potentially deadly.

Best,
John

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

My belief is that our body's fight off cancer hourly/daily, our bodies win percentage is incredible. Unfortunately sometimes the cancer gets thru for many reasons. When I was diagnosed many years ago they asked me do you smoke, I said no have never smoked. Are you a drinker, I said no may be 2-3 per month. Then asked if I was 55, I said no as I was only 38. I asked the doc. what are these questions about. He said a high percentage of those that get head and neck cancer SCC are heavy smokers, heavy drinkers and over 55. He then added your just pain unlucky and you will survive this. That was year 1996. Maybe they should add the question do you have sex? Ok, Ok what man or woman does not want to have sex. To me you can not blame this on any one thing and if you did what does it matter. If you know what caused it would that change what your going to go thru. I know the most important people that need to know what causes head and neck cancer are the research people so they can get a easier fix/treatment.

Until research know more, to me we all are just plain unlucky, we need to go out and beat the crap out of our cancer and then live life enjoying and having fun daily. No reason to blame any one or anything, focus all your energy in maintaining a PMA(positive mental attitude)thru treatment and recovery, believe that all will be well and it will be well, Keep your Faith in God and Jesus in your heart, and never, never, never give up.

BTW, I am a two time cancer survivor, one time necrosis on the pharynx, one time construction accident with broken neck that happened between the two cancers.

Please think it over and put your energy into beating the crap out of cancer and recovering and let the research people figure it out. Go out and become an advocate to help find moneys for research.

All days are wonderful, just different degrees of wonderful daily.

John

hilllaguna
Posts: 11
Joined: Sep 2001

The link that is in the beginning of this thread takes you to the OCF news site, (updated with new information many times per week, and you can subscribe to it through an RSS feed for free) but if you want info on the viral issues, the foundation keeps an up to date HPV page which has much more information on it. http://oralcancerfoundation.org/hpv/index.htm

It's true that right now HPV status does not change treatment protocols, although there has been a submission by Dr. Maura Gilliison (probably the most published peer reviewed researcher on the subject) for a clinical trial to look at changing treatments for HPV+ patients. The reason is based on a New England Journal of Medicine article that OCF and the NCI funded early last year which showed a distinct survival advantage for patients with an HPV16 etiology. It seems to respond better the radiation and chemo than tobacco etiology disease, and the hope is that people could receive lower dosing with the same outcomes. Obviously this would mean lower treatment related morbidity and quality of life issues that go on long after treatment ends.

As a stage 4 oral cancer HPV+ survivor, now 12 years out with significant swallowing issues and more (I went through before IMRT even) I fully appreciate what that might mean for mew people coming down the path. Wishing you all wellness.... Brian

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

Brian,

Thank you for your thoughtful and articulate post here. It is always WONDERFUL to hear from the folks who have survived with this for the longer term. As a seven-month veteran of HPV-16 positive Stage 4 BOT, I'm really happy to hear from you. I had also found the information from Gillson, and was intrigued. I do admit though, that given the option of a "lower dosing", I might not have accepted. My goal was to do everything possible toward a complete cure, and d*** the side effects.

Geeze, buddy. Joined in September of 2001 and you have only posted six times? I think we need to hear from you more often! Please do keep in touch.

Deb

Liz K.'s picture
Liz K.
Posts: 32
Joined: Dec 2010

My husband and I were given the news Dec. 6th that the branchial cleft cyst they removed had metastasis scumas cell carcinoma in a node (the cyst had a lymph node inside of it), and that it had the HPV virus in it. All of your posts have been so insightful and I really appreciate all of you posting. We have had the PET and the CT like all of you. We've been told to do a radical neck surgery even though the PET showed nothing. We have decided to do a biopsy of the nodes in the neck first. Some of you said to slow down and to make the right decision for us. Do you think we're are going to slow? He also has to have several weak teeth pulled which is upsetting. Did anyone else have to have teeth pulled? As the caregiver, did you stay home or go to work? Would you rather be left alone to sleep or have someone with you? Thank you for mentioning the tube for nutrition, first time I heard that, and that will be good to be ready for. We are ready to attack! Thank you again for all your information.

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Hi Liz, and welcome to the forum....

As for being told to do a radical neck dissection even though the PET showed nothing doesn't make much sense to me. Have you had any other opinions or talked to other medical professionals?

As for teeth, that does make sense and I know of several on here that were in the same situation post radiation, so my presumption there is that they have radiation planned as part of the regime'.

One person that I know personally on here that lives in my town had to have all of their teeth pulled prior to treatment.

My wife and I both work, she was my caretaker. I worked from home from January - August 2009. I mainly do computer related work, so my employer allowed me to connect online and work from home.

My wife did take time with me on treatment days, and I had others stay with me from time to time. As for company and myself, if I weren't feeling well, I liked the company of someone being there, but really wanted to be left alone, LOL. It was easy to become crumpy sometimes.

As for the PEG, I was a bit over weight going in, so it wasn't something on the list for me. I never had issues by not having a PEG like others have. But there are also several on here that also didn't have the PEG either. It wasn't refused and would have been inserted if the MD's had requested for me to.

Hope I have answered a few of your questions. Just remember everyone is different and responds differently.

Best,
John

Liz K.'s picture
Liz K.
Posts: 32
Joined: Dec 2010

Thank you John for your advice on what to want from a caretaker/giver. I will expect grumpy and hope for happy or dopey!

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

My husband also had a branchial cleft cyst - they are rarely the primary tumor, however. In his case, a tonsil had the primary tumor - he had no symptoms and they had to go looking.

I also wonder about doing a radical dissection with no PET evidence to go on. If they are recommending pulling teeth, it sounds like they plan to do radiation, at least. If so, it would seem better to wait until after the treatment is over to biopsy lymph nodes.

Are they concerned about whether they were able to get the entire tumor with a good margin? If so, that might explain why they want to go back in and remove more tissue.

About the caregiver side - I had almost 5 weeks of sick leave saved up. I has planned to use it for the last 3 weeks of treatment and the first 2 weeks of after-treatment, as that was when Doug's doctor thought it would be most useful (he said many of his patients can barely drive themselves to radiation during the last few weeks). Instead, I had to start a week early, as Doug had severe nausea after the second chemo and it persisted (along with many other issues) for weeks. The drive to radiation was almost an hour each way, so it would have been difficult for him to drive when he was really sick.

I was glad I was not trying to work at the same time - even if he could have made the drive himself, I was running around a lot filling prescriptions, buying and trying nutrition supplements and making many, many different soft foods that he might be able to eat and keep down. Oh, and a lot of cleaning up for a while. Neither of us slept well, so the ability to take naps was a major plus for us both.

I also kept track of the drugs - I went to using a spreadsheet as the drugs were changing daily at one point. (The spreadsheet showed what drugs he took and at which time, so if I was not home and he knew it was drug time, he could get them himself - we also used a 7-day pill-holder, but used it for the various dose times in one day. We used the extra space to note things such as what he ate, when he threw up, when he had other symptoms, etc.) Printing it out each time it changed was useful, as we could just hand the doctors the printout - their own records were often not as updated, or they would have to look through several pages to get the whole picture. When we were trying various combinations of drugs for the impossible nausea, this was a big help.

Liz K.'s picture
Liz K.
Posts: 32
Joined: Dec 2010

Thank you for for your advice on the spreadsheet. I will take your advice.

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