HPV+ 'Shame'. Do you disclose your HPV status?

Strawberry54 said:

HPV+ Yes, yes, yes!

I was up front about the HPV+ cancer because I want people to know that this is an increasingly common cancer in my age group (60’s).  I am not embarrassed, but I am honest and my generation was all about ”free sex”and folks, sex isn’t free.  Nothing is.  I am typical for my age group, two or three sex partners, all in a committed relationship.  This is typical of base of tongue cancer that is HPV+.  I cringe to think what the “hook-up” generation faces. I want to see parents vaccinate their children, both boys and girls against HPV.  I want the ads for the vaccines to start including this particular cancer.  

If something good can come from me being an advocate, I am right there to speak up and do what I can to educate and help people to keep from getting this cancer.  Plus, why wouldn’t you want to share that this is so much more curable when it is HPV+?

My dentist was amazed at what she had to do to actually see the cancer.  Using a tongue depressor during oral cancer checks can help the dentist do a more thorough screen.  Even so, the initial tumor looks like a pimple and is easily missed.

Strawberry54,

I see that this was posted around the time of the Great CSN  forum “melt-down of 2018” and that might be why I missed this one.

You said  “My dentist was amazed at what she had to do to actually see the cancer.  Using a tongue depressor during oral cancer checks can help the dentist do a more thorough screen.  Even so, the initial tumor looks like a pimple and is easily missed. “

During the growing phase (we will call it) the HPV may not be visible to any visual detection by anyone.  That is one of the sneaky aspects of the HPV, it formS below the top layer of skin and may not cause an ulcer or a pimple, maybe for years, many years.  And by the time it does break the surface it maybe cancer. it is similar to the same virus which can cause cervical cancer in women, which the doctors will exam for using a pap smear and scrap the surface looking for infected cells. If you could scrap your throat or tongue to detect the HPV you might have something there. The take away from this is it may not be visually detectable by even trained medical person during the first years of the HPV’s initial growing and developing phase.

Most people will not perform oral sex on someone sporting an active HPV ulcer or pimple as was mentioned.

Matt

If you have done any type of searching on this Board no doubt you have run across posts by "longtermsurvivor". For those that did not know him he was an OGYN medical doctor on his third fight with this cancer. We became good virtual friends quickly. While struggling with the question on how to return to a normal sex life and the HPV issue I asked him for some guideance. He related a story about a patient who had been a roman catholic Nun who had contracted HPV cervical related disease. I insisted that she must have had some sexual exposure and he assured me that she was adament that it never occured. I asked him if he believed her and he emphatically said he did. Of course we will never know the origin of her disease but it begs the question for me if  HPV is really an STI. Yes it can be but it is also transmitted by a simple kiss as already mentioned by another poster. So in fact it is a sort of hybrid STI transmitted rather easily. Lets assume for a moment the Nun was telling the truth. What level of shame did she endure? I agree that as a community we know more about HPV than the general population and should share our knowledge when appropriate. We should advocate vaccination of children and be responsible sex partners and further educate anyone who is interested. At the end of the day none of us intentionally set out to contract or expose anyone to this disease and we have nothing to feel shame about. 

For those interested,women can easily be tested for HPV during a routine pap smear, just ask that it be included in the testing. For men it gets a bit more difficult but it is possible, the penis has to be scraped for a viable sample to be taken and I don't know of any practitioner that would do it. I imagine better testing is not to far off and we have been at the forefront of the learning curve. We are guilty of nothing but our own place in the line of evolution and need to lead in education which is still severly lacking.

I also share with others about my cancer being HPV+ if I am asked how I got it. I am not embarrassed or ashamed. I use this as an opportunity to educate and encourage young people to get the vaccine.

Like Motorcycleguy, I was NPC, but in the 5% unknown as for how I acquired C. As more and more came forward with HPV, and then the prediction that by this year 50% of the H&N would be caused by HPV...So where is the ACS, etc., publicly advising against the cause of HPV? They were so vocal about cigarettes for Lung, which is deadlier, but we all know the harshness of H&N tx, lasting side-effects, and the high cost of tx. When I first went to the Chemo Dr., she asked 2 questions: 1) do you smoke; and 2) are you involved in agriculture? That's it. Course, that was Jan. of 2009. Still, those of you with a HPV cause should not be the ones having to educate people- it should be common knowledge for everyone to know.

Absolutely important to spread the word. The vaccines are crucially important in this struggle.