Hi!

I am wondering if anyone knows of a forum/site where oncologists answer questions posed by the forum participants. I see some sites where general practitioners/family doctors answer some basic health questions. It would be great if there was a site where I could raise some specific questions about oral cancer and get answers from the experts.

My close family member is being treated at a cancer center, but sometimes I have questions I would like to ask that were not answered during the visit.

Thank you.

There are 2 dentist who are members of OCF that post and answer informal questions here.

Im not aware of any site you can get specific info from an oncologist.

Christine

NewYorker,

Can you call the doctors, or others on the health care team, with follow up questions? My team hands out their business cards liberally to me and my caregivers and are very, very open to phone calls with follow up questions. They are very aware of how overwhelming both this disease and the treatments are and that there will be follow up questions.

Don't be shy! Ask questions, make lists - that's what the medical team is there for.

- Margaret

why don't you try posting the questions here?There is mot much Brian and gary don't know about oral cancer.

liz

No doctor in his right mind is going to answer medical questions related to you over the internet. This is a lawsuit waiting to happen. Medical advice without proper patient history and examination will not only likely not be right, but if it is wrong and it hurts you, a person with a medical license is going to end up in court if they do this. It does not happen except in generalities.... newspaper advice columns are always answered in generalities, and what good will those be to you? You can get that here, and perhaps even some specifics that MIGHT apply to you from people that have been through all this before you based on hundreds of people's experiences.

NewYorker10,
Hi, and welcome. (Yeah, I know you would prefer to have never had to find this site.)
You will probably not find exactly what you are looking for in terms of Doctors and/or Oncologists answering your specific questions. The reason being, it would be inappropriate for any professional to give a treatment suggestion on a person's condition and suggested treatment that we have never examined, know their history and the dignosis and treatment plan.
This site is, however, the best online resource that I have found. The site founder,Brian Hill, has made it his mission to bring OC to the forefront and turn his unfortunate journey into a light of hope for all others who find this site.
If you have questions post them in the appropriate catgory and I'm sure you will get many responses from patients, caregivers and professionals. Use the search tool to see if your topic has been previously discussed.
Brian has tried to make sure all information in all posts is subject to review and accurate. The administrators of this site are not at all shy in correcting inaccurate info, adding current info or chasing false hope purveyors away.
Please post any questions you may have and those who are in-the-know will try to answer them.
Cheers,
Mike

I am sure if you ask questions here , seeing as how most of us have been at war with this OC , that you will get some very good answers. These are very knowledgabe people. I agree witjh Margarette . My Drs will asnswer any question I or my family including the gfriend I had, ask them. That includes at least 4 Drs.

Actually, there are certainly sites where doctors do answer specific questions (those sites, obviously, have very clear legal disclaimers). Here are just 2 examples:
http://www.doctorslounge.com/forums/

http://www.medhelp.org/forums/list

The 1st one even has the Head and Neck cancer thread, but the doctors answering questions are primary care physicians, not oncologists, so they are probably not the right people to ask tricky questions.

Actually, I did post my question here but did not get the answer I was looking for, since it's really a question for the doctor. And I beleive an experienced oncologist can have an opinion that may be helpful from just that description, albeit, not a reliable answer, perhaps.

My question would be the following:
"My mother has been suffering from recurring cancer of oral cavity for the past few years, and had been undergoing treatment at a major hospital.

Her case has been somewhat unusual for 3 main reasons:
1) She's never smoked and never consumed alcohol (unlike 85-90% of people who normally suffer from this OC). She's always been very protective with regards to sunlight.
2) She was tested negatively for the most common strains of HPV virus, which some studies indicate contirbutes to OC
3) The 1st tumor was fully removed - good frozen sections during surgery, good pathology report indicating that all of the tumor was removed and the margins were benign. But then the cancer recurred again and again with very similar characteristics (small tumor, clean removal, recurrence 7-10 months later). Fortunately, the recurring tumors were discovered early in during regular checkups by the dentist and the oncologist. Every time, it was either Stage 0 or Stage I without metastasis. She did a cat-scan of head and neck several times, and it was clean every time she did it. She did a needle bipsy of the lymph nodes which was negative.

According to our cancer doctor, there are only 2 main treatment options for the Stage I cancer of oral cavity - surgery and radiation. The doctor does not recommend radiation yet since he feels it should be the treatment of last resort in her case (since you can do radiation only once, and radiation does not kill pre-cancer cells that may be developing into cancer later on). There are some experimental drugs used in clinical studies, but no conclusive information on effectiveness for this kind of case. What is your opinion on cases like this?"

By the way, I sent my questions to some doctors and cancer researchers hoping at least one would say "give me a call, we can discuss it", as I understand that some may be hesitant to say anything in writing to avoid potential legal liability (especially in this wonderful country of ours where people sue each other day and night). But no one replied at all.

My candid answer to that question would be "take her to another doctor and see what he says."

[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

This was a good article in it's time, but you have to remember in 2002 the HPV connection was just being well substantiated. The population conclusions that they came to are no longer considered accurate today. It is definitely an under 50 and male predominance today when you look at non smokers and HPV.

[quote=Brian Hill]This was a good article in it's time, but you have to remember in 2002 the HPV connection was just being well substantiated. The population conclusions that they came to are no longer considered accurate today. It is definitely an under 50 and male predominance today when you look at non smokers and HPV. [/quote]

Actually, one experienced Head & Neck surgeon that we saw confirmed the conclusion of this article and said that in his epxerience, most of his patients who were not smokers were elderly women. Obviously, this is just his personal opinion based on his experience, and is not corraborated by any scientific study.

With thousands of oncologists in the US, I am more than certain you will find many that have not read the most current articles. Given their schedules, patient loads and more, combined with the rate that new information is arriving in the field, who can be completely up to date?

The most current articles on HPV in their original format are right here on this site. Take some time to review them, and if you want more, a Medline search will find you many. But be sure that you look for things published in the last 4 years as things are rapidly changing. Besides that, OCF is a sponsor of some of the HPV work out of Johns Hopkins, and in the next four months there are three new articles on this which have already been accepted by peer reviewed journals that elucidate this further. Identifying demographics and transfer mechanisms has been a priority since it is in flux.

So there is no doubt about my perspective on all this, there is little question that the fastest growing segment of the oral cancer population is under 50, male and non smoking, and that those people have viral etiologies. This is not my opinion, it is drawn from the numerous cancer conferences that I attend each year as both a lecturer and as a listener. Does that mean that older people are not getting this disease? or that the historic demographic of OC patients does not still exist? No. It just means things are changing rapidly.

At the end of the day, you have to listen to your doctors that you have faith in. This is just a message board, and only a couple of people on it are doctors. While some of us are more literate about this than others - for instance in the last 3 months I was paid to lecture to doctors at Tufts University, and at the University of Illinois on the changing demographics of the oral cancer population, and am on two more oral cancer programs before year's end - we are just survivors and patients for the most part. People come with questions we try to put out the best information that is current an the best support that we can. I see nothing wrong with you deciding to take the advice or opinions of your doctors over what you read on any web site or hear in any forum.

Remember lastly that your mother is more like the patients in the Roswell/Buffalo group than not. In those patients, they ended up never understanding conclusively why these older women developed their oral cancers. When all is said and done, this may be the situation for you and her, and you will just have to accept that her genetics are allowing this to occur, and reoccur and that is who she is biologically. Is this the answer that you are looking for? No. But it amy be all that there is to know.