I am not sure that my tumor was HPV positive, but I strongly suspect that it was since I was single for many years but was not a smoker or drinker. Assuming for a moment that I am HPV positive, does that pose any risk to my wife? Is the vaccine effective in mature women?

Any info. from you HPV aficianados would be appreciated.

Danny G.

And to add to this question....Is Johns Hopkins the only place that is testing blood for this. Or, can we get this done elsewhere or closer to home??

Debandbill --

Check postings by davidcpa, who has been very active on HPV issues in Florida, or send him an e-mail or a private message. If anyone knows, he would. I think he said once that Moffitt was doing HPV testing or was about to, but you should check with him.

And I believe the test is on tumor tissue, not a blood test.

-- Leslie

Yea,
Thought I would do that..I have his email. I think Moffitt takes the test (whatever it is) and sends it to JH cause I know David was fussing about Moffitt (actually the RO's nurse) dragging their (her) feet about getting it to JH.

By the way, where is David?? He hasn't posted in a while!

Thanks Leslie, Deb

Deb: I e-mailed David this week about this very subject, and he promptly responded with indepth answers to my questions regarding HPV, which I really appreciated!

I will e-mail to you my questions to him, as well as his responses, if you wish.

Hi Danny,

If you are or were positive for HPV, your wife has surely already been exposed. Her system probably already cleared it as most people's do. However, the vaccine wouldn't protect her (or be of benefit to her) since she had prior exposure. It only protects those who are unexposed - that is why the vaccine is targeted to young girls. The presumption is that they have not yet been exposed to HPV through sex.

Thanks Lois,

Yes, forward the email please. David was treated at Moffitt...has the same RO that we saw for a second opinion there. Great place...we were very tempted to stay at the ACC Hope Lodge and be treated there but the RO was confident that we could receive comparable treatment here so we stayed home. I still have days that find me wanting to be at a CCC but we will definitely have followup there in a few months. Thanks for the email.

Sorry to hijack this thread folks...please continue answering the OP's questions as I am interested also.

Deb

This is along the same lines: I assume because I had an HPV+ tumor that my fiancee is also infected. This may be a stupid question but does radiation clear the throat/oral area of the virus? Do I need to worry about being reinfected?

My tumor was checked for HPV through my local hosptial. I'm not sure where they sent it. When I called to followup I was told it was HPV positive. It was a few more days before they were able to tell me the "type," which was HPV-33. My family doctors checked my records and she had noted that past pap tests showed I was HPV positive (no specific type identified - only high risk). Not sure why she never mentioned it. She did always schedule me for a yearly physical.

I was not informed of my HPV status by my OBGYN. I would like to think that more ENT's need to be aware of HPV's link to oral cancers. Three years ago when I first presented with this problem (one enlarged tonsil) my ENT could have said "Do you have HPV?", and that tonsil would have been ripped out that day, instead of playing a watch and wait game for a few years. Bottom line--this information needs to get out there in the mainstream. Why just vaccinate young girls against HPV? Obviuosly it infects men, too.

Girlcat --

I believe it's only fairly recently that OB-GYNs have ordered DNA testing on HPV samples to determine the strains in an infection. I don't know whether this is done routinely on all samples obtained in a Pap test or if it is ordered only if an abnormality is noted (i.e., if you had a clean Pap, there presumably would be no need for HPV testing).

-- Leslie

Yes, last time I went to my OB/GYN (6 mos. ago) I was told that they would only test for HPV iF I had an atypical or abnormal Pap. Frustrating, because my udnerstanding is I could have it anyway and it could just not be showing any symptoms. I did have an atypical PAP about 7 years ago, they did a colposcopy (a biopsy), which came back negative, and they did test it for HPV I think, but I can't reacll what the results were. Anyway, my most recent PAP was OK.

What's frustrating is that was at an OB?GYN in the town I used to live, when I moved I brought those records with me to the new OB/GYN but then a couple of years went by (one of which was the cancer year) when I didn't have an OB/GYN exam and they told me they threw out my old files!!! And those were the original ones--so now I have no record of that test (the old place did not have computer files).

My tongue cancer isn't in a typical form for an HPV cancer, but I do wonder if it could have been related to HPV.

Nelie

Nelie,

I worked in a hospital where we were to keep medical records forever. The law does vary from state to state. I'd check on the laws in NY, but two years seems like too short a period of time to keep medical records. I'd call back and ask again about those records. Maybe they were put in offsite storage and the person you spoke with just couldn't find them in the office and assumed that they had been thrown away. Ask to speak to the office manager. They should know exactly where they are if they haven't been thrown away. I would also still call the original doctors office. They may have given you the originals, but a common practice should have been to keep a copy for themselves.

This website also helped shed some light on the subject: http://www.sbcms.org/southcalphysician/articles/art11c-98.htm.

I hope you find them!

Joy

Oops, when you click the link it doesn't come up. Just delete the period at the end and it will work.

Sorry!

I used to work in a microbiology lab where we processed and tested the samples for HPV cervical testing. If your pap smear comes back abnormal - an HPV test is now automatically ordered in almost all labs (i'm not sure if there are any labs out there that don't do this automatically anymore). I don't know how long this has been the case - but I don't think it was that way 7 years ago - as not nearly as much information was known at that time about HPV.

If your PAP SMEAR comes back normal - it DOES NOT mean you don't have HPV - it just means there have been no cellular changes yet that the smear detected. You can still have HPV.

Your doctor can also order the HPV test in addition to the pap smear so that you'll get both - regardless of the results of the smear. (Some insurances will pay for this and some won't - so you might get stuck with a bill if you are the latter.) However, the test will not tell you the specific strain you have - just that it is positive for one or more of a list of high risk strains. (I think the tumor testing is an entirely different test which can tell the exact strain of the virus.)

Also - if your HPV results come back negative - it doesn't mean you've always been negative - just that you currently are. You could have had it in the past and cleared it or it could be present in undetectable levels. However, as I understand it - the damage could have been started before you cleared it, so you can have an HPV related cancer - but cleared the virus at the time you were finally tested.

Also - there is no approved test for the oral region - so if your cervical sample tests negative - that doesn't mean you don't have it orally still.

So - in short, you can have:
Normal Pap, negative for high risk HPV
Normal Pap, Positive for high risk HPV
Abnormal Pap, negative for high risk HPV or
Abnormal Pap, Positive for high risk HPV

And as mentioned before - there is no way to determine if you have it orally unless your tumor tissue is tested and recent. If you test an old tissue sample - you may have cleared it by the time the tissue was tested.

Most of the people who get the HPV related cancers are thought to either not ever clear the virus - or just clear it much slower than most people - therefore more time for damage to occur and the cells to mutate into a cancer.

Amy, thank you that was very informative.

When I asked the surgeon at Baptist Hospital if he had tested Buzz for HPV, he stated, "there is no need, it would not change the course of treatment, besides, if I did the test, where would I send the results?"

Just my 2 cents.....

One major reason to test oral cancer patients -- or at least, ALL oropharyngeal cancer patients -- for HPV is that oncologists are now concerned that interpretation of results of treatment (& of clinical trials) are being compromised (or muddled) because they do not know if the better response to the therapy is actually due to the therapy, or to the different biologic characteristics of the HPV+ cancer (generally more responsive to treatment).

If oncologsts know HPV status up-front, even if there is no change in therapy, by examining the post-treatment data from a set of patients, they may determine (for example) that HPV+ cancers respond better to certain chemotherapy agents, or induction chemo, etc. At Hopkins our ENT does not recommend neck dissections for HPV+ HNC patients who have achieved "complete clinical response" to chemoradiation -- which is a real change in treatment based on what we were told in 2005. There are other "rumblings" about possible modifications in treatment which might result once a more complete evaluation of HPV+ cancer cases is made.

Also, for what's it's worth, *I* would want to know if I were HPV+ -- not only because of what it means to a patient vis-a-vis response to treatment and rate of recurrence, but also if a therapeutic vaccine ever gets approved, I might be a candidate. We still do not know the long-term behavior of the virus, that is, whether it might "come back" and cause problems years down the road, and a vaccine might help prevent this.

Thus to answer Buzz' surgeon, you send the results to Buzz! (And perhaps, to oncologsts studying HPV+ oral cancer...)

Gail

Thanks Gail,
Good information above!

Excellent response, Gail! Thanks and welcome back to the good 'ole US of A!