You have had all the proper treatments following that absolutely proper diagnosis methodology. At this stage of things it makes no difference to you. While there is a small survival advantage, please remember to get your follow ups without fail. That survival advantage so far has only been looked at short term, and we have no idea what it might be at 10 years, or longer. Eternal vigilance... or eternal rest.

Oscar,

I pushed and pushed to get my cells tested for HPV so that I may have peace of mind just knowing what caused my cancer and that was 2 years ago so you know how I will advise you.

Re the medically necessary reference...IMO your mental well being is medically necessary so if finding out if you test positive or negative might help your mental outlook then do it.

Does having HPV+ SCC improve your survival chances? Some say yes and some say no so I choose to listen to the experts that say yes and hope their correct. I sleep better at night that way.

David and I do this on regular intervals. He had to know. It makes him feel better. For others, it makes no difference... especially after the fact.

You were having a great day. You stepped off the curb and a truck hit you. You were taken to the hospital, evaluated well by the doctors, and treated appropriately given that (for your bruises and broken leg) they did what every hospital in the US that was a quality hospital would have done. There were NO other treatment options available to them. You have been discharged from the hospital in good condition, a little worse for wear, but your life is going forward. Your doctors have told you to come back regularly so they can check that you are healing well, and that any potential for new problems related to your situation are caught early.

Now. Does it matter to you if it was Ford or a Chevy truck that hit you? Are you going to be doing anything different if you knew? No. You are going to be looking for ALL trucks, and probably for cars as well... and me, I'm so gun shy, I'm looking for bicycles too. But the knowledge of the type of truck still makes no difference to me. Perhaps there are some very speculative reasons for knowing. It may be that all Ford trucks have a blind spot, and they do this more often. Am I going to really just look for Ford trucks? No. (I'm a puss and I'm even looking for bicycles etc.) The other brands are still a danger even if those Fords might be a bit worse or harder to see coming.

It may be that Chevy trucks have a softer bumper, and people that get hit by them seem to get hurt less and live longer. Am I only going to be looking for Chevy trucks hopeing that if another one hits me it is a Chevy? Of course not, I'm looking for everything. If some safety expert down he road publishes a paper that says Fords driven by white people, especially in the dark, that are painted blue hit more people than others, will I find it interesting? If I was hit by one just like that, sure, but can I do any thing with that information? No. I am a science nerd, so I am reading about truck accidents all the time, and because I have a national platform to talk about trucks hitting people, I stay boned up on what's going on in this whole thing. But do you need to? Probably not. But if you are the kind of person that has to have an answer for everything that happens in your life, you could chase this forever and a day. You may one day find an interesting factoid or something that may influence your behavior, you may become an advocate like David, asking people to be for looking out for Trucks, Fords in particular, but for the bulk of people right now... I think it is just an exercise to know what kind hit you.

Consider yourself lucky that the truck didn't kill you. Live each day fully. Look both ways before you step off the curb. Have your doctors check you for any recurrence of issues related to your accident.... which you of course had no way to predict, prevent. All that is left for you, is the future.

Just to follow thru Brian's creative analogy....If I spent my entire adult life avoiding Fords because I was told they could kill me and I was told a Ford hit me but I knew that was improbable then I would want to try and find out what really hit me. So I hired a detective who did a test and I'm convinced I was hit by a Chevy and while I was still hit at least I'm satisfied that I avoided the Ford.

Okay, you guys are crackin me up...very nice analogies...

Ah, David -- but you paid your wife $2 million to find out it was a Chevy! ;-)

It helped both my husband and me to know that his cancer was caused by HPV. Plus, he was treated at Hopkins where much of the research on the role of HPV is being studied and we liked feeling that we were contributing to a greater understanding of oral cancer (something positive out of a bad situation). But, I think it's a very individual decision as knowing his was HPV+ has made us wonder how that could be given our very long-term, monogamous relationship (e.g., how long does this virus stay in the body or are there other means of transmission?), what about risks to me?, has the virus really gone away?, etc. So, you answer one question but are left with others.

I guess in the end, the story is that you can do everything right in life and still get blind sided by something that will take your life. I became acutely aware of this in Vietnam, where wearing your flack jacket and helmet, staying close to the ground when the shit hit the fan, and other obvious precautions still did not prevent people who did it all right, from getting shot or killed by some random piece of shrapnel flying through the air. Right next to you. It could have so easily been you instead. You can't predict or avoid everything, and once the die is cast, it is what it is. Even understanding what hurt you does not change much for me. For David it does. People are different.

The moral of the story is there is no way to protect yourself from HPV16. If it enters your life, and your immune system is not prepared (genetically) to deal with it, you have a problem that you won't foresee, can't prevent, and will have to deal with whether you want to or not -but if you spend too much energy and time thinking about it, it takes time that you could be spending thinking about something positive in your life instead. I respect David's desire to know. I am glad he finds some satisfaction in that knowledge. If there were something that you could do with that knowledge (after a cancer diagnosis) I would definitely be on his side of this perspective. The one positive I see in David's interest, is that he has been able to take that knowledge public to educate others. Right now that education is important because people who think they are safe by not smoking, need to know that they cannot skip oral cancer screenings as a mandatory annual event.

Sophie - You are absolutely right. Because you were at an institution that had a researcher that was really looking at this, you have knowledge about your disease that others might not have. You still had to go through the same treatments, but you realize that in the end, even knowing what you do, you are still left with more questions than answers.

Let me help with a few observations. It is now believed that there are non sexual means to transfer this virus. Given how easily other forms of HPV transfer, 16 is likely no different. There is no answer to the dormancy issue related to the virus at this time. Other viruses are in you forever - bouncing through periods of activity and dormancy. Herpes Simplex 1 and 2 are an example of this. So it is also possible for some versions of HPV, but not proven at this time. Because it is such a common virus, it could be that your immune system deals with it, but you jut get re-infected over and over again during your lifetime. Lastly, it appears in preliminary studies that those people that are HPV positive before treatment, still are afterwards. This data is somewhat confusing. Because the studies are preliminary, we don't know if the people after treatment got re-infected or it persisted through treatment. If it persisted, that is a good indication that it may go dormant somewhere remote in the body from the area of the disease site. (Herpes Simplex lives on the ganglion of your nerves when dormant, far away from the oral or genital environments where it produces lesions when active.)

Hi,

Thanks for the frank responses.

I tend to agree with the getting hit by a chevy analogy. From my wife's PAP tests, I know she has been exposed to HPV. I can make the assumption I have been exposed/"infected" also. If I want to feel a little better about my condition, I can tell myself that HPV is the culprit (seed), and a compromised immune system brought on by a very very very high stress personal situation functioned as the soil, water, and fertilizer, and two years later...blammo...scca sprouts in my tonsil, striking like a thief in the night, out of nowhere. A very simple cause and effect--skip all of the other extraneous details, because the end result will not alter where I stand today.

Having said all of that, however, it still would be nice to know. I'll bring this up during my next visit in November.

I have absolutely no room to feel bad for myself. I heard news today the an ex-coworker of mine has ALS...he is a husband and father. We all need to be very thankful that we are able to function enough to type on this board and receive treatment for oral cancer--many others are much less fortunate.

Regards,

Oscar


Stage IVa SCCA, rt tonsil, (1) level II node (3.2 cm). No ECS. Neck dissection, 30 IMRT. Spared chemo because no ECS.