Hi, my name is Bob and this is my first writing here. I am a 51 years old and have never used any tobacco products. This oast April I went to see my PCP for swollen glands in my neck. He put me peniciln and orderd a CAT Scan and made an appointment with an ENT. The first CAT Scan was unreadable due to the swelling in my neck and left tonsil. Ater two weeks of strong antibiotics another CAT Scan was orderd, this one was readable. The ENT set me up for an ultrasound biopce of my neck which was positve for oral cancer. Next me ENT the removed my left tonsil which was positive for cancer. My ENT then made an appoinment with a cancer ENT who then orderd a PET Scan and same day surgery to puta scope down my throat for a complete lookinside, his look and the PET Scan showed that the cancer has not spread as of June 18. June 28 myself and my significant other meet with my ENT and a team of nine cancer specailists to make my battle plan for this enemy. As a solider for 21 years in the US Army I believe this enemy is the tuffest. My ENT says we can cure this enemy but that I will hate him (ENT) before this done. My Dentist has allready made the dental trays for me as my ENT wants to protect my teeth. I have read a lot of the entries here and have learned alot and hopefully I will be able to pass on my treatment to others. So far I can not complain about one person who has been involved with this. So to all others out going trough this hang tuff and win the war we are in. BOB

Bob, you have the right attitude. This IS a war and recognizing that is half the battle. Ask any questions you have going in, along the way, or after treatment and there will always be someone here to answer. Good luck to you, and be sure to let us know how you are doing.

Hi Bob and welcome to the OCF.
How right you are about waging a war,only difference is that this one will be very personal to you,although the enemy will have the same profile( faceless,silent,and deadly if you dont fight back).I am sure that wont be a problem for you,and the back up forces are ready and waiting to reinforce your defences any time you feel overwhelmed.

Good Luck
Liz

Hey Bob. I hate to hear about your dx but I'm three months post treatment and am feeling ok. I'm trying to rebuild strength and stamina right now. For me basic training in 91 was a good training for this. It is very uncomfortable at times but the treatments won't kill me if I do my part to keep myself healthy and use the rest of my team (the docs) to do their part. That is what basic training taught me. I can do alot more than I ever imagined and a little pain and exhaustion wouldn't kill me. :-)

Educate yourself about the procedures they plan to do and also check out new options that are proven. The one thing I did that helped me was I didn't put an expectation on how tough I was going to be through my treatments. I just told myself I was going to be the best warrior I could be. It helped on the days I needed to reach deep down and it helped on the days I had to allow myself to just rest. Hang in there and thank you for your service for us. Lee

Bob,

I would get your cancer cells tested for HPV ASAP. You generally fit the mold for HPV and cancer docs are learning new things everyday about treating HPV+ SCC.

Bob,

One more thing, don't let the ENT perform a neck disection unless you get other qualified opinions, especially if it's HPV+.

David: I'm ignorant about all this and am trying to learn all that I can, so as to help my husband in his treatment. What do you mean by "no disection, if HPV positive.." Why not? Thanks for your help! (PS I asked husband's physician if he would test for HPV, because I have read some recent articles, and he said he will)

Emmylou,

Now I didn't say definitely no ND if HPV+. What I said was definitely get another qualified opinion especially if he was HPV+.

The reason I said that is:

1. Some research has indicated that the 5 yr survival rate of patients with ND's is no better than those without ND's and a lot of CCC's are now not recommending a ND until after they see what concurrent chemorad achieves;

2. The current thinking is that HPV+ SCC is a biologically different cancer from HPV- SCC and that studies have shown that HPV+ SCC responds better to current treatment than HPV- SCC, and

3. HPV usually presents itself in younger (40-50's) patients and usually with nonsmokers, casual drinkers, BOT or tonsil primaries and usually nodal involvement.

At the last meeting with my RO, he told me that IF HE WERE TREATING ME TODAY, as opposed to just 10 months ago, he might not have been as agressive as he was. Unfortunately I didn't get to follow up with questions, but I have a ton I plan to ask him next time.

So that's why if I were him and if I were anyone for that matter, I would get tested for HPV, especially if I were a nonsmoker.

If I did test positive I would want to be treated by a CCC currently on top of HPV+ SCC issues.

David: Many thanks for the info! I want to learn all that I can so that I can ask intelligent questions when speaking with the doctors. There's no such thing as 'too much information'...in my opinion. You have posted so much that I have found useful already! None of you know how much finding this website has meant to me during these past few weeks! I am SO thankful!

Goodmorning David,
Just a note of encouragement. In Sept 05 at 48 years I was DX with tonsiler cancer that had spread to 1 lymph node. I fought all of the battles 39 tx imrt radiation, 3 rounds of chemo, modified neck dissection and finally 39 HBO treatments. There was never a doubt that I was going to beat this , the glass was always half full for me and I met this enemy head on and told him daily that he was not going to win. Today I am 50 ,a proud grandpa and never felt better . I am glad that you found us to be a soldier and I know that you will not leave your fellow soldiers behind, so if you do not mind taking orders from an ex sailor: you will reach behind you and pull those up this hill who are coming behind yyou, you will become part of this network that works it's magic by supporting our fellow troopers. Your knowledge will increase as will the level of help that you can offer others. My friend you are now a welcome part of our team , start fighting bro we need the likes of you.
Lenny

Hi Joanna,Cookey,Lee,David and Lenny,
Thank you for your support and imformation. I will be asking my MO about HPV, he mentioned HPV during our first meeting but did not mention a test for it. I know that I will be calling on others for support once I start treatment around July 16.
Thanks again, Bob

Before David gets everyone off on a tangent, I respectrully state that NO ONE currently can say with any certainty that lesser treatment WORKS in HPV positive tumors, though there is talk of funding a trial to scientifically figure this out. That will certainly be down the road, and any results that dictate changes in treatment patterns are even fruther away. Secondarily, there is no practical way to determine if a male is positive for the virus at this time except in an excised tumor. In females the only place that we can be cetain of finding it is in the cervix and that does you little good since we do not understand at this time the relationship between infection in one area of the body and tansfer to another.

Neck dissections may become unncecessary in the future, but there is no clinical data that says that if you have nodal involvement that rad chemo alone can deal with it. When there is some trial we will know. In the meantime there is only anecdotal evidence and long term results from those whose doctors are choosing to pass on the proceedure is 5 years away, and is not being collected in any organized manner. Meaning that data will remain anecdotal to that particualr doctor and institution and not necessarilly become a standard adopted by others.

Survival does not mean that you are here tomorrow, it means your life continues until some other untimely thing happens to you, perhaps not cancer. Anyone under the 5 year standard (which is not written in concrete) that hasn't addressed the disease with the biggest hammer possible and available to them at the time, does so at their own risk. We just do not know if lesser treatments are enough or not.

Welcome Bob

You're War is Our War!

You have read many posts and have recieved good advice from our Troops.

To the cancer invading our bodies I would like to say "This We'll Defend"!

With that said I would like to Thank You and ALL military personel for their service to our Great Country as we approach it's 231st Birthday!

Let us "Never Forget" our Military Personnel on active duty worldwide and at War as YOU read this and include them in our Prayers today and everyday.

HAPPY BIRTHDAY AMERICA!

Stay "Army Strong"! Petey

Brian and others,

If you read my post, I did not advocate a lesser treatment if you test positive for HPV, I only repeated what my very well respected and published RO told me at my last appointment. I also stated that I did not get to ask him a ton of questions about his remarks. He also told me that Moffitt may be trying to get a study on this topic funded but he said that, particularly in the US, it's hard to find participants willing to get less treatment compared to others getting the "full blown" treatment so we may not see the kind of study necessary to draw verifiable conclusions on this topic as Brian says for years. Even knowing what I know now, I doubt that I would want to be in a study that I might be the one that didn't get the full blown Tx when my life is at risk.

I still stand by what I said re ND's although I can't put my hand on the article I read that gave me that statement and this is the practice currently at Moffitt bearing in mind that there may be a million different variables that can come into that decision.

I was told by 2 different cancer docs that a ND was required before I was to get concurrent chemorad. One doc said I needed a Radical and the next said Partial. Then Moffitt said "we don't see any benefit to removing your nodes because some studies have concluded that there is no improved survival after 5 years with a ND vs no ND." Size of the nodes does play a large part in that decision. Moffitt also said that there was always the option to do a ND post Tx and explained the associated risks. Now, will I ever know that Moffitt was correct? Probably not, but so far I'm glad I got several opinions before I started my Tx.

As far as getting tested for HPV, it is very true that the only way for a male currently to be tested is to use the same cells that tested positve for SCC but my comments re testing were contained in a post that the male poster had already been confirmed as SCC+ so I assumed readers would make that obivious connection.

IMHO, before the scientific community can know all they can about the differences between HPV+ and HPV- SCC they need to seperate the 2 pools as much as humanly possible and until everyone DXed with SCC gets tested for HPV, that obvious goal can not be acheived.

Do I know eveything there is to know about HPV+ SCC? Of course not. Do I know enough to be dangerous? Yes and that's why I try to steer potential HPV candidates to get the test and get informed.

I'm not trying to get anyone off on a tangent, I'm merely trying to bring a much needed awareness to not only the public but especially to people lucky enough to find this site that HPV is a separate, biologically distinct and mutually exclusive cause of SCC and your treating doctors may need to take that into consideration whether they know that now or not. If they are not "up on" current HPV+ SCC research, they should be encouraged to consult with the likes of Dr Maura Gillison.

With all that said, I am not a doctor and Brian knows much much more about this cancer than I'll probably ever know but dealing with the law as I have for my entire career, I try to choose my words carefully so as not to mislead people that may read what I say. So please, when reading all posts, do not over interpret what the poster is attempting to say.

Respectively submitted and always searching for the truth.

Hi Bob,

Your initial experience (neck lump, tonsillar cancer, tonsillectomy) is almost identical to that of my husband's. He too was a non-smoker. He was (as suspected) HPV+ and was treated at Johns Hopkins.

The chances are very high, but not 100%, that your cancer is also due to HPV. A recent paper in New England Journal of Medicine (D'Souza et al May 10) showed that of 100 tonsillar/ base-of-tongue cancers at Hopkins, 72% had HPV+ tumors. If your center does not test for HPV, Hopkins can do it, see web site
http://pathology.jhu.edu/labservices/hpv.cfm
The importance is that it affects prognosis (better) and recurrence rate (lower) rather than treatment.

Secondly, at Hopkins at least, some doctors are reconsidering treatment plans for HPV+ tumors. However right now, as Brian says, the initial treatment plan does not change --- it is almost always chemoradiation -- but the ENTs are not recommending ND for HPV+ patients who have shown a complete clinical response to chemoradiation. This is a 180 degree flip from when we first consulted with our ENT, by the way. He says he would still want to do a ND on a smoker. He also told us that ND can give about a 5-10% increase in local control but there is less evidence for improved 5-year survival, study results have been mixed. (There have been few studies published, as Brian says, most are retrospective analyses, and none to my knowledge stratified patients into HPV+ and HPV- subgroups, as was strongly recommended by Dr. Maura Gillison in her Dec. '06 J. of Oncology editorial.)

HPV+ cancers are biologically different from those caused by smoking, our RO recently told us that research is showing the cells apparently retain normal "cell death" (apoptosis) signalling when damaged which is why the cancer seems to respond better to treatment.

This is a geat forum, you will get lots of help and encouragement -- but don't neglect looking through the OCF web pages themselves for help with diagnosis, treatment, side-effects etc. The information is invaluable!

Best luck,
Gail

Bob!

Thank you for supporting us as a soldier!! Now it is our turn to support you. My prognosis was very similar to yours and my ENT said you might just get one shot at killing this dragon, so go for broke and be as aggressive as you can be. I just passed year 5 and I can live with the side effects of the slash, burn poison method of treatment. The joys of meeting the grandchildren I would have missed and a shot at dancing at my daughter's weddings is well worth it! Best of luck to you! - Kris

Kris.....

You made me LOL!

"Slash, burn poison method of treatment" is now firmly embedded in my medical terminology!

RE: "Slash, burn, poison method of treatment" is now firmly embedded in my medical terminology!

This made me LOL !!!

Just in my case it was poison, slash, burn

David please do not misconstrue my post to mean that yours was not correct. I am just interested in presenting what we know for sure, what we suspect, and what we do not know in those terms when we give information to people. There was nothing wrong with your information.

While I talk with Gillison and others almost weekly, what I hear is far from the language of absolutes. Using her as one of many sources that I listen to, the most current conversation I had with her was about the hopes of eliminating radiation from HPV treatment some time in the future, as it has the longest term and most severe consequences to the patient, even to the point of producing its own radiation induced cancers. Chemo negatives come and go, but rads are for life. She acknowledges that we are very far from this, but it is a nice goal to shoot for. It will take money and science to show that we are capable of managing the disease to long-term resolution without the radiation. The better response of hpv positive tumors applies only to those which occur in neversmokers at this time, and that data is not really long term. We at least know for sure that tobacco and HPV are not synergistic in their interaction but the two are additive, a very different thing. This is undoubtedly adds a new sub group to the equation, ex smokers who are now HPV tumor patients. How they will skew the numbers and how we sift them out in an unbiased manner remains to be seen. Whether they also show this slight survival advantage is unknown as they are currently not being sifted out of the sub population by all concerned.

Also as Gail mentioned about the ND's, this is only occuring in multidiciplinary environments. You get a surgically oriented doctor etc. working with the patient first and it is part of his protocol before he passes them off to the radiation chemo guys... if he does.