"It has become a stealth statistics discussion". It has indeed. I personally think this is another example of why we need a statistics topic to more openly and critically eaxmine the data for those interested and to prevent the people who find this stuff irrelevent or discouraging from being disturbed by it.

And "59% of what" is an excellent question and, I suspect, were the data presented another way, it would not look like such a huge advantage. Even if it really does exist.

I found myself nodding my head in agreement when reading Brian`s post.
I try to answer as many newcomer posts as I can but, I could see where they would be discouraged from joining our forum.
The discussions have become a lot more skewed towards facts,figures and conclusions.
Maybe Nelie is right, and there is a need for a Statics topic on the board for those who enjoy such discussions, that`s not my call.
I do know, when I found this forum I was looking for help in the day to day dealing with Base of Tongue cancer.
Quite frankly, all the talk about that particular form of cancer being so much worse than others scares me.

I don`t like being scared!


Marica

My two cents worth.

OK, Ok -- we will let this lie dormant if you think it is best -- two things however, the vaccine I refer to is NOT the about-to-be released HPV-16 vaccine for prophylaxis of cervical cancer, but a HNCSSC-specific DNA vaccine developed over last 8 years at Hopkins and yes, it will be YEARS before it may make it into the treatment for HNC, if ever. It is just entering clinical trials.

To clarify, the 59% that Gillison's 2000 paper references was the difference she and her co-authors observed when comparing age/stage etc. matched HNCSSC cases that were HPV+ or HPV- , followed over a number of years.

Finally, we have never gotten the impression from any of the oncologists at Hopkins that BOT/tonsil cancer is worse than any other oral cancer -- but all have said that HPV+ is a favorable prognostic factor and that most HPV+ cancers do present in tonsil/BOT. (But not all tonsil/BOT cancers are HPV+!)

And that is that -- if people don't want to explore this subject, that's OK with me. There's lots more to talk about on the forum!

Gail

The discussion of a

Brian,

Just catching up here. And no problem, I understand, and will back off from any future posts of this nature.

I'm doing personal research right now to read as many full studies as possible that relate to my husband's situation and recovery and learn as much as possible about the latest info coming in on IMRT results, neck dissection, and anything else pertinent to him. I am tired of accompanying him to doctor's appointments and being left uninformed and somewhat scared each time by off-the-wall comments they often make. This personal exercise has actually armed me with some real facts and a better understanding of treatment differences, issues, etc. so that I can make better sense, as his patient advocate, of what his doctors sometimes insensitively say.

However, I totally understand what you are saying from a more global OCF perspective and apologize for my part in anything that might have led to anyone's discomfort.

Connie

I would like one question answered that is not statistical in nature. How is one tested for HPV if its not a test of tumor tissue? For women it is really NOT a moot point whether or not their oral cancer might be HPV related because, if it is, they are also way more vulnerable to cervical cancer. I know I can never know for sure what cause my oral cancer but I would very much like to know if I have HPV and need to be more concerned about another cancer.

Nelie

Connie,

I can really appreciate your post in that I believe most of us came here or stayed here because we were in search of others that shared our journey (or our loved one's journey) so we could have a little help in making to the next leg of the relay. I, personally, have found that all the bizarre things I felt were so unique to me were, in fact, experienced to some degree or another by almost every survivor I have met. It was a lifesaver to hear ways to be more proactive with the medical team and in my life.

That being said, it seems like from time to time we get into the same discussion about studies that may or may not be relevant and we try to keep the discussion moving towards leading edge technologies that may keep others farther away from the path we are all on today. There is something new on the horizon always and unfortunately none of it has proven yet to be the silver bullet to rid the world of cancer. Let's face it, this particular disease (SCC) has been treated the same for so long that it really is refreshing to see some of the discussions taking place today that may yield results in the future.

Your husband is fortunate that he has an advocate that is taking the time to arm themselves with as much information as possible. Gathering all you can is the first step of directing the outcome and all of us should work exactly towards that.

Ed

Connie.... you have no reason to apologize for anything. The more information you have the better questions you can ask and the better decisions you can make. However this is a personal journey and what works for me for instanace, does not apply to someone else even with what, on the board, seems to be a similar condition. The truth is I don't know enough about them to make really specific recommendations to them, only to hopefully point them in a direction that they will pursue as their own journey of discovery and answers develops for them. Also not everyone has the ability to decern between early data, single source data, etc. as information that has, or does not have, value to them and thier unique situation.

Nelie, the good news according to Dr. Gillisons work is that there is no evidence that in a given individul's body that the HPV virus in one location is capable of migrating to another. Hence a cervical cancer patient is not necessarily at risk for oral cancer because there is no evidence that it is transfered via the circulatory system from one local to another.

Connie, you did say something that I will emphasize:

"I am tired of accompanying him to doctor's appointments and being left uninformed and somewhat scared each time by off-the-wall comments they often make."

This is a common reality and one that we probably have (or will have) suffered. That doctors are prone to comments that leave the patient wondering or in fear for no reason. Doctors should realize that the slightest facial expression can change a sincere "you are doing great" to "I think he saw something and he just isn't telling me yet" reaction. Knowing other people have been there and done that has been a great comfort to me. Being aware and educated is always of value when working with caregivers.

Back to statistics for a moment; if you are here on this site because you have this cancer, you already are outside the statistics because this is a fairly rare cancer. Further, if you are age 50 or younger and have this cancer you again are outside the statistics. If you are here and didn't use tobacco or alcohol, you are outside the statistics. If you are here with a HPV positive tumor, you are outside the statistics.

My point (I'll try to make a clear point) is that statistics did not protect you or me from getting this cancer! Neither will any statistic cure me. The numbers simply do not matter to me the patient/survivor.

Frankly, statistics do not matter to anyone coming here with a new diagnosis either!

Damn the statistics and full speed ahead!