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!