Has anyone read if there is a difference in how/what treatment you would receive if you were diagnosed with HPV related cancer? Thank you, Angel

At this point in time there is no difference in treatments. Some hospitals are doing fewer neck dissections (if the sentinal nodes of the neck are confirmed via biopsy to be cancer free) but not all treatment centers are comfortable with this yet. Other than that, the treatments (radiation, chemo and surgery in various combinations depending on institution and staging) currently are the same. There is very early data that HPV positive cells are more susceptible to some aspects of the treatment process. This, in the FUTURE, MAY change treatments for these people. The problem right now would be that a blind clinical trial would have to be done with some patients getting conventional treatments, and others only getting some lower dose variation than that we know works. Clearly eliminating the most damaging to long term quality of life, probably some radiations, would be a benefit if you were sure the end result would be the same... long term elimination of the cancer. Who wants to volunteer for that study? Be part of the group that gets what we know works to kill a deadly disease, or be part of a group that gets less treatments - hoping they also get rid of all the cancer for the long run, and have fewer side effects and long term issues from the treatment as well. For me, I would still choose what we know works.... We all know that second chances in cancer are an iffy thing. So designing and getting this trial approved will likely take some time to occur.

I was treated at Moffitt 2 years ago when HPV was hardly and I mean hardly, recognized as a cause of OC. Even though I didn't fit the tobacco user profile and even though I constantly asked how I could have cancer from tobacco when I didn't smoke, Moffitt never mentioned HPV. Moffitt however didn't think, in my case, that a ND was recommended even though 3 previous cancer docs had prescribed it. So their decision on no ND had nothing to do with HPV vs non HPV.

After being led to this site and after a fellow poster alerted me to the HPV cause I finally got Moffitt to send my cells to Johns Hopkins and it was confirmed HPV+ 16. Since then Moffitt has developed their own HPV testing and my RO, Dr Trotti, told me that had he known I was HPV + he may not have treated me so aggressively. He didn't explain how at the time. Also since then at least one study has concluded that HPV responds better to the conventional treatment and HPV+ SCC has a lesser chance of re occurrence and therefore better long term survival rate. Also more recently there has been discussion in the OC community how that may affect future treatment protocols since they all recognize the long term damage done by the existing brutal treatment. Dr Trotti is one of the planners for the August or November (?) NCI meeting being planned to discuss this topic so I know he will keep me posted.

As Dr Trotti and Brian acknowlege the problem is going to be who among us is willing to potentially risk our life to further that study? Even as zealous as I am on the HPV cause and even though I believe I am cured of my cancer and even though I believe that HPV may have helped my curing, I'm not sure I would want to be the guinea pig.

So for now I'm sure that even the major CCC's will continue to treat HPV+ and HPV- SCC the same way. I still see the ND vs no ND as a separate issue but one that a CCC should get involved with even if it's a second opinion meaning I wouldn't let anyone perform a ND on me without a second opinion from a CCC and even if they agreed I would want someone that did 10 ND's a month to operate on me vs a doc that did maybe 10 a year.

Just to make one point clear. Institutions used to do prophylactic neck dissections. We know that's where it likes to go, and that is the leaping off point to spread around your body to vital organs. Remember this disease kills you elsewhere not in your mouth. So the thinking has been - even if we can not see it in a scan, let's take the nodes out to be sure, at least on the side where the primary is. This is what is changing.

However, even if you have an HPV positive primary, if the scans show some node involvement (PET or CT), you are likely going to have one. As a function of all the things that were done to me, it was the easiest to deal with, and had the fewest long term effects, especially compared to radiation.

I agree with Brian about the neck dissection being one of the easiest things to deal with, although maybe the scariest going in -- just the term "neck dissection" sounds evil. A year out, I have some shoulder and neck nerve issues, combined with the fibrosis from radiation. These, however, are a small price to pay for cancer free status.

I had a bilateral neck dissection, with positive nodes on the right side, but the primary just touched the midline, so they did the dissection on both sides to be safe. They also did levels I through V, but spared the SCM, Jugular and SAN. Surgery was done before treatment.

If they had suggested a prophylactic ND, I would have agreed to it. The studies seem to indicate that ND cases have better recurrence stats than non-ND cases, though I have not seen any HPV specific studies.

I was very happy to agree to a neck dissection. My doctor suggested one because of the length of time my lesion had been present but unidentified. It gives me (hopefully not false) confidence that if stray cells had escaped and were present in the nodes, they would be out of my body, and that if any were percolating in my mouth, they wouldn't have anywhere to go. I have a dandy scar, but except for looking like Frankenstein for a short while, with staples and a drain, it was fairly simple to recover from. I'm happy I had it. I have no muscle issues. I did have some laryngeal nerve damage, and I did have some damage to the nerve that operates the opening of the eyelid, and now I have what's called "Horner's Syndrome"....primarily a drooping eyelid, which I have had surgery for and which improved it some. I also do not sweat on that side of my face. Not a big problem!

Brian's question about who would volunteer for an HPV treatment with potentially less radiation than the current 7200 GY and a few less Chemo or MAB may have been rhetorical and is certainly moot for me, yet I don't think there would be any dearth of subjects. As this plague grows and hits the later Baby Boomers, the cohort will include people like myself who routinely decline many recommended medical procedures and were subsequently vindicated by valid studies. People my age and younger matured watching conventional medical treatments for breast cancer, prostate cancer, ulcers, arterial blockages etc substantially revised in favor of at the time unproven but less destructive alternatives. There are lots of risk takers out there and if my CCC had a clinical trial open for a modified HPV treatment regime, I'd have taken the chance.
Not that there is anything wrong with being cautious and waiting until all the studies and facts are in, but I would not wish the current treatment modality we all suffered through on anyone and hope it can be better in the future.

I definitely think that HPV positive tonsillar cancers are going to be treated differently in the future. I also think that they will fall into the realm of Hodgkin's lymphoma - that is very survivable to the vast majority that get it. I believe that targeted chemos will eventually be developed that will deal with this, and radiation will potentially not be needed, elminating the treatment that has the worst QOL issues. Though these predictions are years away, I have every reason to believe from the researchers that I talk to, that this is the future. I also believe that because field cancerization does not take place in non tobacco oral cancers that the survival rates will improve overall, as HPV becomes the dominant cause of the disease.

The one fly in the ointment for all this is that early detection of HPV positive patients is more difficult to catch at pre disease states, and we may not be able to do so. That would mean that catching oral cancer as an early stage disease will become the norm vs as a pre cancer. Nevertheless, it still means survival.

Brian,

Can you explain what 'field cancerization' means? Thanks!

- Margaret

I just means that a large area is exposed to the carcinogenic process. In smokers for instance, oral cancer is just one of many cancers that may occur in their lifetimes, and they may develop several - not even considering other non cancer health issues. A smoker is a candidate for lung, bronchial, esophageal, oral, laryngeal, even stomach cancers. They even have increased risk factors for cancers that seem distant from the process of contamination. They can get one this year and another several years later. This makes them poor candidates for long term survival as they have exposed many areas to the carcinogens.

HPV is a much reduced risk factor for additional remote site cancers though a few exist, but transfer and second HPV positive primaries are only sparsely reported. It has not been conclusively proven that a person that has HPV cervical cancer will develop a secondary HPV cancer anywhere else. We do not know everything about the life cycle of the virus.

Brian-

Thank you. That makes perfect sense.

- Margaret