The Gardasil ads and what the company can say is dictated by the cervical cancer clinical trials and the FDA. Neither of the vaccine manufacturers are able to talk about anything but warts and cervical cancer. That does not stop OCF and private individuals that know what they are talking about, from spreading the word about the opportunity that vaccinating our children presents.

Ok, now i'm scared after reading this. I was never tested for HPV - should I and what do i need to do to protect my husband and 2 yr old against it? I've never had the Gardasil, is it now too late to protect myself agains cervical cancer with it (assuming i'm HPV positive)? Gosh so many things to worry about now!!!

Minh

more than 99% of people have an immune system that recognizes it as a threat and clears it. So unless you have some genetic abnormality that messes this nice system up like me, David, and a few others here, you have nothing to be scared of.

Well this is a bummer.. We found out today that my husband is HPV Negative.. We were actually hoping for a positive since we have read that the prognosis is better. Plus he isn't a smoker, so how the heck did he get it?? I know no one knows, but it just would have been nice to get that positive in our minds and go into the treatment with more confidence..

Don't worry. He could still do very well. Just stay positive. There is only one way to think right now- it is that you are going to beat this. Any other line of thinking will drive you up a wall.

JDR - I agree with misskate - you have to get into the fight mode, otherwise it's a crazy-maker. My son is also a non-smoker and doctors said because of his age, it "could" be from HPV but he was never tested. That was 4 years ago and he is doing just fine now.

JDR

I'd ask your doctors what HPV test they did. When I insisted that my CCC do an HPV test on my tumor, (because of what I learned on OCF, they also told me that I was HPV negative.) So I was surprised to get the following email from them this January
[quote]Remember back earlier last year you asked for us to test your tumor for HPV status. Our pathologists at that time did a study using one technique (immunohistochemistry staining), and it was negative. We now use a more sensitive testing technique (called PCR). We reran your tumor using this technique, and it was positive for HPV subtype 16. I thought you would be interested.[/quote]
I had been suffering total bewilderment on how following all the exhortations on exercise, nutrition, meditation, etc. could have failed me so badly. It is good to get an answer.
Remember though that being HPV positive is no guarantee of things going great - as my recurrence proves. So Keep the Faith
Charm

PCR is a good test, but they are old versions of the test that are less accurate. The best test, done at Hopkins and that Gillison does at James, is- in situ hybridization.
I don't talk about it much but some cancer centers, don't even do PCR because of costs. Maura told me that she had come across centers that were dong a brush collection of the cells from the lesion, and then doing a conventional cervical cancer wet prep test for HPV 16. We have no idea if that works on oral tissues or not, and it is the least reliable of any of the tests. Since it doesn't impact treatments today, they are just thinking about costs and not about collecting great data.

Brian

That's is all too true. If it were not for OCF, patients would have no way of knowing that their doctors use different HPV tests, since a reasonable assumption would be that they are like blood tests. Guess I should be glad my CCC didn't use that unproven oral swab method. While it may not impact TX, having a reason or cause for oral cancer is a great comfort to many. Sloppy or inaccurate tests deny us that.
Charm

Are you saying that the tumor cells must be tested, that a blood test for HPV isn't enough?

Do most CCCs keep tumor samples on file? Clark's original surgery was in November 2007. We are very interested in getting his tumor tested.