Hi everyone,

Sorry to see you here, glad you are.

I am half way through proton therapy (aka proton) at Penn. I don't have much of a base to compare but based on my experience to date and from the literature it seems like proton is the way to go (as opposed to IMRT) for treating my kind of tumor SCC T2N1 HPV+ at the base of my tongue. That is if you can afford it, there isn't a waiting list, etc.

One question that has been dogging me since I first heard the news: After my treatment what changes do I need to make in my sexual behavior. Am I now a carrier of HPV-16 and should I refrain from oral sex? What about kissing?

Good morning Michael:

Welcome to the family. It's a big one and a very supportive group. You will get your questions answered here and hopefully a little help to get through this very big upcoming battle.

Proton therapy is very new compared to all the other radiation methods most of us have used. I understand it minimizes the damage to non-cancerous tissues, which is a big plus. That you had no waiting line before implementing the therapy will make many others jealous as we had to wait through those waiting lines for treatment methods that were very busily being used.

Your HPV-16 status has definitely changed your dating life, at least that's my opinion (and I am not a doctor, so this is not medical advice). It's a subject that we have been talking about a lot recently on the forum and several different lines of thinking are running around simultaneously. I'm going to tell you my line of thinking, for the others I refer you to the forum.

Some think it can be transmitted via kissing, others don't think so. It most likely was transmitted to you via oral sex as that is the most logical link to connect genitals to the oral region. Is it the only way to transmit it to the mouth region, I don't know. I have read at least one account of someone thinking it was transmitted via sharing a joint of marijuana via residual saliva left on the joint. Does that method have any validity, I don't know. But, on an even more important issue, can it be transmitted via normal intercourse, I expect so, so oral sex is not the only concern. As you study the issue more you will realize condoms possibly prevent that transmission mode, and that dental dams exist that can prevent oral transmission, except possibly in kissing. I certainly wouldn't want to have to put essentially a piece of Saran Wrap between my mouth and hers prior to kissing.

I think the main point I am trying to convey is there is still a lot unknown about all the methods that HPV-16 can be transmitted. But that you are HPV positive is a known (and documented) fact, therefore you have serious legal and ethical considerations for your dating future. I've heard that knowingly infecting another with an STD is a felony, so prior disclosure to prospective partners is a must in my opinion.

And to me that points you squarely into the STD population dating scene, fortunately of which there are STD dating sites on the web (STDmingle and PositiveSingles, both are .com). In my very limited experience I've found that all the STD's are lumped together, and even though HPV is a choice you can mark yourself positive for, that doesn't mean all others are HPV-16 positive (in fact I haven't yet seen anyone mention -16). I expect the HPV variation most of them are designating pertains to presence or absence (with diagnosis) of genital warts, which is a totally different strain (and likely non-cancer causing). So, to a degree you may be just substituting one STD for another by becoming involved with these people.

But, what else are you going to do. I am not ready yet to swear off the opposite sex.

Maybe one other thing to think about, you have a very big, arduous journey ahead of you whether it's proton therapy or not. I'm sure you will still have unpleasant side effects such as loss of taste, loss of saliva production, possibly mucositis, throat burns and possible scaring, neck skin burns, weight loss, plus others. While I am now two weeks after completion of treatment (IMRT) I still have no taste for food. Long story short, I don't think it's a good time for me to be going out on a date and then have to explain why I'm drinking Ensure instead of eating normal food with my date. I can see that's a good way to "ensure" there won't be a second date.

Another issue I've thought about and which you would eventually too is that since HPV-16 is cancer causing whereas most other strains of STD's are NOT, is that may have a big scary effect on your future dating pool. They may be positive for an STD, but it may scare the lleh out of them that you are carrying a known cause of cancer.

And that makes it essential that you educate yourself about how the majority of people clear even an HPV-16 exposure from their bodies via normal immune system function. To me, that will be the biggest hurdle we have to overcome. While I am not convinced of this yet, it may point us (or limit us) to the small segment of the population who are also HPV-16 positive, as they already know the details and risks of exposure whereas the rest of the STD population doesn't.

It might be a good idea for the STD dating sites to add an HPV-16 designation to the profile you fill out, but then they would also have to include all the other HPV strains that are "at risk" strains, and I understand that there are about 8 others. At this point I don't know what the other 8 strains make you at risk for, some are likely cancer, but maybe not all. Since this website and forum are about oral cancer, you might have to explore that outside this forum.

I hope my candor has been helpful. Good luck on your journey, we will be here to help every step of the way.

take care

Tony

If you are still sexually active with multiple partners or with one partner who is active with others then IMO I would wait until your Tx is over and then get the Gardasil shots. If the above doesn't apply then I wouldn't do anything.

Michael
85% of people in the US have had HPV in there life and cleared it normally I don't know that it is poss to find a partner who has not had it and how would you know, also they don't know if your system still has it just that at some point you had it and it caused your cancer. Woman are able to tell by there Pap test although I haven't heard that they are restricted from sex just have to be monitored for cancer, there is lots to learn and there will be others voicing there opinion on the subject soon...I'm not a doctor either
Ken

I don't think you need to change your sexual practice at all.
85% of the population will have this virus at least one time in their life. It is that common. Generally the immune system will clear it. You may go on and get it again. Clear it again. Only a very small percentage of the population do not clear it, only very, very few of them will go to develop a cancer from it.
As Doolittle said, women are who have a positive PAP smear for HPV are not told to abstain.. I have never read any studies /literature that advocates abstinence for those who are positive for HPV. Our medical team certainly never told us to take precautions or abstain.
I for one would not restrict myself to only the population that have known STD's as we know them.
If you are really concerned over this issue talk about it with your Docs. I for one, think it is a non issue.
Tammy

I disagree with the no action required IF you are sexually active with multiple partners or with one partner who is sexualy active with multiple partners. It is true that a very large percentage of the population transfers the virus back n forth throughout our lifetime and the vast majority of times we acquire the virus our immune system recognizes it and clears it time after time. Only in a very small percent does this virus avoid clearing and takes control of our cells multiplication which is cancer. The problem is that science does not know why this happens. Some say stress, some say a weaken immune system, some say weaken celluar frames caused by external factors but so far no one has proven anything. Your problem, like many of us here, is that you have already proven that this virus, for whatever reason, was successful in taking control of your cells and therefore IMO you would be at a substantially higher risk (than the general population) for another potentially deadly exsposure. That's why if I were you I would consider the ultimate insurance policy called the Gasrdasil vaccination IF my opening sentance fits your profile going forward. Please keep in mind that I am a CPA and NOT a licenced health anything.

Also not everyone carries the same version of the virus... while many people may have it they may not have version 16. Right? So best to do what you can to protect yourself, as you would with any STD. Assuming two people are monogamous / aka married - then what you have now both of you have already been exposed to. But its when you are single and indulging in multiple partners that protecting yourself and them becomes important.

Thanks for the replies. A couple of comments:
- I am talking about relationships other than with an ongoing partner. This could be a new relationship or ongoing secondary relationships. I am also talking about post-treatment relationships, once the tongue has healed and there are no open ulcers or lesions. And I am assuming that condoms and other standard safe sex practices apply (including sharing prior information as to my HPV status). So the question can be refined as in addition to standard safe sex practices what do I as HPV-16 + person need to do to protect my partners.
- That the recommendations range from do nothing to be very careful, I think reflects the medical profession's lack of evidence on HPV transmission and its evolution into cancer and hence lack of a standard best practice. Its scary and controversial to think of cancer as an STD. But that is really what it comes down to, i.e., the point of this thread.
- Some have recommended getting HPV vaccine. It is my understanding that once you have contracted HPV the vaccine is no longer helpful because your body already has the antibodies that the vaccine helps create. Does anyone have an authoritative understanding of which is the case?
Thanks again
Michael

Michael, studies are being conducted to find out the effectiveness of the HPV vaccine after exposure. It cant hurt! But at this time it is only available to Americans ages 12-26.

Here is something to think about. HPV-16 is a STD. In New York, probably most other states too, it is a misdemeanor for a person who knows that he or she is infected with a sexually transmitted disease to have sexual intercourse with another person. People who know that they are infected with STD's that can cause death and who commit sex crimes or have unprotected sex with people who do not know of the infection may also be guilty of reckless endangerment, a felony.

Some states have defense for people who do not know they are infected or tells the victim of the infection and obtains consent.

Then there is the possibility of civil liabilities too. There have been such cases with herpes infection. No wonder Michael Douglas changed his story.