[quote=davidcpa]He is totally against testing you for HPV because of.....WHY?[/quote]
Likely money for testing that won't effect the treatment or outcome...

Pete, I think that is it, because the testing won't effect the treatment or outcome. Thanks, Angel

I respectively disagree. In my case I felt vindicated that I tested positive for HPV since I had devoted my entire adult life to not smoking, exercise and eating what I was told was good for me. It also improved my mental outlook when a study concluded that HPV+ SCC responds better to treatment and is less likely to reoccur. Whether or not that ever proves to be accurate at least it improved my mental outlook at a time when it was surely welcomed. If I was Dx'ed today with SCC in my tonsils or BOT I would request to be tested for HPV as there is a 70+% chance it would test positive. Besides the more HPV+ patients that scientists can track, the chance that they can learn more is greater and the better the conclusions.

David, I sense that you really dig into a problem until you find an answer, which may be why you are a CPA and is why I think you are very good at it. Most of us don't have that urge as strongly and the windshield makes more sense than the rear view mirror.

No guarantees that lifestyle, or lack of it, will keep us around longer -- Ask Jim Fixx...

As to tracking, that's why they gather data in one place for analysis; I believe it's highly unlikely that independent testing results are going to go there.

OTOH, if it made even a slight difference in the course of treatment, then the money spent would be justified.

Of course, it might help the Doc's place potentially more accurate survival stats on a particular patient, but I know how bad those stats are in the first place, having had cancer come back to an area that was specifically irradiated. It also might help the victim to know where the cancer came from, as it certainly does in your case, but it might not.

My CCC doctor immediately dismissed HPV as proven as a cause and he had just returned from a medical cancer conference where it was discussed.

Angel,
I missed sevral days due to illness and machine downtime. They just extended the end date. What is important is that you get all of your Greys (or fractions of treatment). The RO's grumble about it but I think that it's more of a scheduling trainwreck for them since the machines are in such heavy, constant use. You need the weekends off so that your tissues can heal a bit.

Even if they discovered that HPV caused yout cancer (which Brian and I both suspect caused ours) there is no good test for it unless a. it's active or b, they can furnish a sample of the original biopsy material to a lab for analysis. In any case, it doesn't change the results or the treatment plan. Your insurance won't cover the cost of the test in most cases (for a sample of the biopsy material to be sent to a lab). Many ENT's consider it to be academic once you already have cancer. I could have gotten my biopsy sample tested but I don't care at this point.

My RO (at the CCC) informed me this week that they don't follow cancer patients after 6 years anyway and refered me to my PCP for future followup, which is semiannual anyway, by the head & neck surgeon.

David, Out of curiosity, what was the size of your tumor?

Gary, I never thought about asking my RO how long he'll be seeing me, but he did mention he watches his patients in my situation very close for two years and I think he said every 6 Mo's to year five (I guess he did tell me). My ENT gave me the same info except after year five he wants his patients to come in annually. He also said he just released an 80+ year old patient that had OC 20 years ago and a 38/39 year old had his 13th anniversary but that the 80+ year old was released because of age. I suppose that was his way of telling me I'll be a patient of his forever.

They say that HPV doesn't change the tx but yet those tumors respond better to radiation. If I had a BOT HPV+ tumor I would opt for radiation and chemo as my first attack rather then a total glossectomy. So, why do they say it doesn't change the tx plan if your tumor is HPV related?

My RO told me that had he known that my SCC was HPV+ he MAY HAVE treated me less aggressively. Remember I "only had" the rad and chemo so I still don't know what he would have cut back on and knowing what I know now and knowing how I turned out, I'm not sure that I would have wanted to be some test patient but hopefully HPV research and testing will continue and these and plenty more questions will be resolved. Hopefully one day Gardasil and other vaccines will eliminate HPV caners all together. I still advocate getting tested for HPV, especially if one fits the current profile. I don't see any harm in the treating facility having that knowledge.

Ray,

Sorry just saw your question. My cancer was found first by a FNA of one of 2 suspected nodes. They told me it was appx 2 cms. After that I ended up at Moffitt and they put me under to find my Primary. I fully expected waking without my tonsils but when I woke my wife said the surgeon found my Primary at the BOT which was the first spot he biopsied. He told her he was so small that he thought the biopsy removed it all and he decided to end the procedure so no ice cream for me. Even that little bit of cutting in my throat left me in some pain for a few days and I can't imagine what some of you have had to endure!!

when i had my surgery which was to remove some of the palate, upper jaw etc ... i woke with a lot of pain in a lot of places, was bleeding from my throat and it was so so so so sore i could not swallow meds and swallowing even water hurt so bad ... nurses acted like i was making it up which made me so angry - because i wanted to get better, i was trying my best ... anyways long story short in about 4-5 days it was enough better i could swallow better but not great .. when i got home i found they had cut / tore / biopsied >???< my tongue, throat, several areas around my mouth ... and they had cut the lip in two places (which they had apologized for in the hospital) they had not just done the surgery like they said ... once i saw that, where my tonsil was actally cut and looked different than the other side ... then i understood all of the pain and showed hubby because he bought what the nurses had said thinking i was making things worse than they were (as if i had ever done that in my life before argh ...) but anyways once i had him look he then understood fully what i had gone thru.

David, I hope too for a cure for HPV but careful what ya wish for concerning gardasil. do a google search for that stuff and type in gardasil complications. Many have died from that stuff and many many more have suffered awful side effects and they sweep it under the table and keep pushing it.

i encouraged my daughter to get the shots and she did... now i wish i would not have and i just pray she has no more bad effects from it.

also merck admits (ever so quietly) that they have no idea if one series of shots will work long term - women may need more shots later - there are also no long term studies to prove it even does what they claim to help ... but the evidence is in strong about women having major complications from it.

anyways ... good to be informed on these things and not buy the ads the company sells... this stuff SOUNDS great - like new found hope - but it comes with a pricey label for these little girls being forced to take it.

more than 8000 reports of bad side effects in the year 1/2 since they started using it... plus 18+ dead.

gardasil - $360 for EACH of the three required shots ... any doubt why merck is pushing it so hard and trying to get the gvt to make it mandatory? HECK don't talk about the cons ... we want $ ... talk about how it MAY errr i mean WILL help yeah thats it ... the world live better without HPV ...

how about lets try imagining a world where big pharma does not risk the population for their new budgets and christmas bonuses.

a new study now shows gardasil is causing auto immune problems in many patients ... along with the myriad other problems *such as stopping the menstrual cycle for these gals in their child bearing years ...which is what it did to my daughter*


sorry - this is a touchy subject with me ...