On the subject of HPV, I have tested negative for it. I have never thought of asking whether the tumor removed from my tongue was HPV positive. On my next visit to him, and IF I remember, I will ask him, get his thoughts on the subject. He is totally respected by me and many, many others, he works out of Univ. Of Md. Hospital in Baltimore and is on this Board.
Then again, I might not ask, cuz I truly do NOT want something else to worry about!
Not to open up another can of worms, but my 20 year old daughter will be getting the vaccine for cervical cancer and HPV this summer, my gyn highly recommends it for her age group. Thanks for listening! Carol

I have a question in regards to Gail's posting:

"Max -- tonsil cancer is actually increasing at a rate greater than that of oral cancer per se, according to Dr. Mara Gillison who is studying the role of HPV in oral cancer. She recently wrote that tonsil cancer may well be considered a "surrogate" for HPV+ cancer. Anyone with a tonsillar cancer should get the tumor tested for HP...."

If your tonsils were removed as a kid, would this cancer manifest itself as Base of Tongue SCC?
I wonder how many BOT patients (HPV status known or unknown) have their tonsils?


Ginny

Hi David,
I understand that Gail is trying to relay information and data. I'm not questioning this. What I asked her is why the need to put "it has a much better prognosis" in almost every post she makes, even when the post isn't about HPV. That was my point. It is easy enough to encourage newcomers to get their tumors tested for HPV as it may make a difference of sorts in their treatment............but I simply don't see the need to tout it as a "better" cancer since, as Brian has stated, the advantage is very marginal. I truly know that Gail means well.

I really think this just speaks to the fundamental differences and the highly unique nature of each individual cancer. Although my SCC was in my mandible, my medical team's approach was to operate, then radiate.

I asked about that (not wanting to undergo the surgery) and the lack of chemo. They indicated that in my case, they wanted to remove the tumor mass first, since I was already at stage IV. Their concern was the potential for metastic spread.

As a result, I had the surgery (along with the left radical ND) followed by radiation 10 weeks later. No chemo because the primary was removed cleanly, and all margins and nodes were clear.

I think there are just too many factors to take into consideration for treatment to be the same across the board.
Wayne

My husband was diagnosed with Tonsil cancer as the primary by PET scan after a surgical biopsy.
Sorry I am very good at typing technical info here.
We thought we were going to the OU Medical Center in OK City to schedule his radical neck dissection. The team there reccomended IMRT radiation as the first step.
After his treatments, drove 2 1/1 hrs down and 2 1/2 hrs back for each one, we met with his team.
His surgeon gave us 2 options. Told us aprox 80% of the neck dissections he did came back clean after radiation, but stage and area are important factors.
We could wait 6 weeks and do the neck surgery to clean up the area.
OR
Do another PET scan in 13 weeks and see if anything lit up.
The Radiologist said he felt confident and waiting would be a good option.
As a team, all three of his DRs and us, we decided to wait.
It was the hardest time ever. Noone to check on him daily just us.

We did the PET and it came back clean.

He will be monitered closely, every 2 mos and the Surgeon said maybe another PET in 12 mos.

It was on March 27 that we saw the before and after PET scans. One lit up like the sun in the tonsil area and after treatment dark as night.
Hope we made the right decision.

Maggie

Minniea :

Sorry for posting what is becoming pretty well established (there are more than a "few" studies) e.g., one from December 2006 J. of Clinical Oncology is quoted by Dr. Gillison in her editorial in the same issue. In that issue, Licitra et al. report that patients with HPV DNA

Gail,

Take a deep breath and go back and re-read my post. I asked you why you felt the need to put that information into SO MANY of your posts.........not this particular post. I have seen you put this info in posts that had nothing to do with HPV, many times. I am well aware that the research on it is important. There was no confusion on that fact. My point was, let's be careful that what YOU see as optimistic and love to make sure everyone knows pertains to your loved one.............may be distressful to others on here. Maybe even a bit irritating at times.
This isn't meant to make you defensive, I'm just pointing out something that YOU can't recognize. You have put your facts out there enough times that simply mentioning a search on it will suffice in any future postings, that way you are sparing any newbies on here that will have additional stress if their cancer isn't HPV positive.

And to be very blunt with you Gail, I choose to listen to what Brian has said on this subject. I'm bothered that I brought to your attention something that can be distressful to other patients and caregivers (though typing it makes YOU feel better about your loved one) and you STILL go on and on about how much better the prognosis is for HPV cancer! Then actually state that you don't see why it would distress anyone.

I have no power to dictate what you post and that's not what I'm trying to do. I was suggesting that your overkill on the HPV research may be distressing to some others. It was really that simple.

I'm going to close this thread up and we can start another one about the subset populations. Clearly the HPV issue is important, particularly in the light of early detection, as we can no longer determine who is the high risk patient, and worthy of screening. That is the most important part of the research findings. I have had for several months Gillison's next article which will be in the New England Journal of Medicine next month and it covers the demographics of this subset population. The rate of growth of the HPV subset has been between 2-3% a year from the early 70's, and shows no sign of slowing down. While as patients we all tend to think about recurrence rates, survival, and possible changes in treatment, the real issue here is early detection and how that impacts catching this before it becomes a killer stage disease. It also puts another emphasis on the pre-sex vaccine - as the positive collateral benefits from the cervical vaccine in the head and neck community will clearly be evident a decade or more from now as it becomes less of a factor in the etiology of the oral cancer world.