[quote=Cookey]My candid answer to that question would be "take her to another doctor and see what he says."[/quote]

I would certainly do exactly that if it was very easy. Without going into a lot of details having to do with my my mother's insurance, availability of experienced doctors that take the insurance and other issues, I am pursuing several avenues of inquiry. And getting an opinion from impartial specialist on the internet is one those.

Anyone has any thoughts about the actual question?

Thanks.

I gave a great deal of thought to the "actual question"before i replied.I dont know many people on this site who would suffer as many recurrences as your mother without seriously questioning the treatment plan she has been undergoing.There are many combinations of treatment available,and she doesn't seem to have been offered any other option than surgery,and that is basically questionable,by any ones standards.

Easy or not ,another doctors viewpoint is needed,and i dont mean on the net.She needs to be seen at a ccc by a multidisciplinary team.

I would seek another opinion from a CCC. HPV is a leading cause of OC of the BOT and tonsil region and while it's possible to have something other than tobacco or HPV not be responsible for OC, it is a fairly small percent, like less than 5%. There is a ton of info on HPV on this site.

It's also not unknown for some to now receive the radiation more than once but it is a treatment I would avoid until it was recommended.

I would try to get her an appointment with Johns Hopkins and see what they recommend. Good luck and stay viligent.

[quote=davidcpa]HPV is a leading cause of OC of the BOT and tonsil region and while it's possible to have something other than tobacco or HPV not be responsible for OC, it is a fairly small percent, like less than 5%.[/quote]

I actually asked a question about HPV on another thread. My mother was tested for the major HPV strains and the result was negative. However, there are dozens of HPV strains and not all of them are studied well, and certainly some of them may cause OC.

How would the positive HPV diagnosis affect the treatment for OC? I thought HPV being a viral infection cannot be treated (except for the new vaccine only available for young women). Am I wrong?

The current Gardasil vaccine is recommended for pre sexually active girls from ages 12 to 24, I believe. It reportably is 100% effective with guarding against the 4 strains associated with warts, cervical and OC. The vaccine is currently seeking FDA approval for similar males.

About a year and a half ago John Hopkins began testing a vaccine in males that is supposed to boost the immune systems response in people already exposed to the HPV virus and I believe some conclusions are forth coming. I tried to get into that test but it was already closed by the time I applied. I believe they also will be testing the female side as well.

If all goes well future generations will not have to be concerned with HPV related cancer.

Have you asked or discussed your specific concerns and/or questions with the doctors who are currently treating your mother? Have you told them you would like another opinion?
I am sure they will welcome any questions you have and if they don't know the answer will certainly find the answer.
I would not let the lack of insurance coverage prevent me from getting a second opinion. Yes it will probably be costly but, if you really think it necessary then get one. I did and I found a way to come up with the money and it saved my life. I realize Canada is different than the U.S. but we still don't always have access to additional opinions or tests without paying.
Cheers,
Mike

Dear NY10,

Here are some things you might be interested in knowing. There are very few people here that have had surgery only. I am one of them. So far, so good.

As you can see from my signature, I have had only one occurence. You will find that there are some people that have had radiation more than once.

Your statistic of 85 - 95% of OC patients are or were smokers is a little high. The number that I use is 75% and this number is decreasing due to the fact that less people are smoking. The number of cases in total is increasing because of the HPV connection.

I hope your mother is doing well.

Jerry (a former New Yorker)

Actually even OCF had the wrong data at the beginning (2000) when we used to say 75% tobacco/alcohol and 25% we don't know. That data came from a Blott paper published in 1988 (old) and was referenced again in a more read Mashberg paper in the early 90's. They were good guesstimates at the time, but they were wrong even then and more so now. The current thinking from Gillison at Hopkins and other opinion leaders is that is is about 50% tobacco alcohol, and 30-40% HPV. A small percentage (likely about 5%) are genetically related, though the data on this is thin. And 5% we have no clue at all what causes them. Tobacco use has declined in the US every year for at least 15 years, (with the current usage of all types at about 21% of the population as tobacco users) while the incidence rate of OC has stayed the same during this period, and in 2007 actually increased by 11%. So HPV as a replacement etiology was discussed in the 80's but definitively proven as a subset etiology in 2000 in a breakthrough Gillison paper. But it is obvious that you can't have a decline in the stated prevalent cause (tobacco) and and increase in the rate of incidence without a replacement etiology.

Bottom line is that even with these statistical changes we are finding that the demographics of the populations getting oral cancers are very different. The historical tobacco/alcohol etiology is still older, more male, more black vs white, and the HPV population is younger, more white, and evenly men and women. They will eventually be called two different diseases and likely somewhere down the road, have different treatment protocols though that is not the case today.

So the deal with people who get (and luckily catch early) SCC and have surgical only solutions is not unknown or uncommon. Historically they have been treated as described, particularly in patients with no known risk factors - using surgical only solutions. In the past (6-7 years ago) I was very against this approach. My thinking now from listening to many, many speakers at research and cancer conferences that I speak at, is that my previous feeling that all patients should have the biggest hammer thrown at them from the get go, may have been premature or overkill in certain situations. We all know that even with clean surgical margins there are often micro mets that cannot been seen on scans, that given a couple of years, they can prosper into another recurrence. Radiation deals with these, but it is a one time only deal, though as stated by others, in limited cases SOME re radiation is OK in IMRT patients in particular. So Docs tend to think of this as something to use when surgical solutions do not control in the long term. Long term survival is the goal, this is sometimes accomplished via repeated management, not absolute cure. A small surgery in a closely monitored patient they feel, even if it has to be done every few years is preferable in their minds to QOL altering radiation for what appears to be very localized early stage disease states.

Now without knowledge of HPV influence, and the lack of field cancerization in the process (no known etiology), and the acceptance that some patients develop these from genetic aberrations which cannot be controlled, the thinking has changed a bit. HPV patients have fewer recurrences when their primary is found early. The do not have second primaries in remote areas like tobacco people because the HPV virus does not effect those tissue types (anecdotally believed but not proven conclusively) and field cancerization is missing from the equation. So perhaps radiation is overkill in patients that can be managed with lots of minor surgical procedures. The key here is constant monitoring and early discovery of the recurrence. Late discovery is a "go to surgery plus radiation and possibly chemo or monoclonal antibodies" immediately. Late stage disease spreads quickly via the lymph and circulatory systems regardless of tobacco, HPV positive or negative origin, and regardless of genetic predisposition or origin. Once that wild fire starts, it runs fast and hot regardless of how you come to it. With patients with field cancerization, (tobacco etiology) radiation of surrounding tissues, and the known pathways of dissemination of the disease is prudent and likely the best course early in the game.

The thinking is that with a genetic origin, radiation is not going to stop the many recurrences. It is not going to stop the body's predisposition to continue to spin off malignancies. Right now there is no good genetic profiling for this etiology determination. So it is a judgment call by the doctors, and to some extent a best guess in treatment planning. They hold the radiation for the day that it is not caught early and then the fight begins in earnest, because the caca is hitting the fan quickly. There is a wide variance in patient compliance in monitoring and follow up, financial ability to do so many repeated surgeries, doctors abilities to catch the smallest beginnings of the next event, etc. This is a dangerous situation to say the least. The adage that it is "eternal vigilance or eternal rest" (engraved on a plaque in my dad's B-17 bomber that he flew over Germany in WWII) could not be truer in these situations where causality is unknown or unprovable and surgical only solutions are used.

I hope that these comments and observations answer some of your questions. They come from many years of listening to the finest minds in the realms of research and treatment who are out on the lecture circuit with me. I am only a common man of modest accomplishments and knowledge, you are reading the ideas of much smarter people - not mine- which I am restating here.

Brian,

Thanks for clarifying the statistics and I personally now feel a great deal better about the approach that I followed for my treatment protocol.

As all of us here will agree, you are far from the "common man".

Jerry

Brian - that was an excellent summary. Thank you!
I have not looked at that old post until now.
Here is the only study I found that specifically focused on OC among non-smokers and non-drinkers.

http://www.annalssurgicaloncology.org/cgi/content/full/10/5/551