I recommend getting treatment at a major comprehensive cancer center. Preferably a NCI designated or affiliated CCC

Also, it doesn't appear to me that in this case the current NCCN practice guidelines are being applied.

I believe those Guidelines definately call for a HPV testing and in most cases recommend chemo-radiation prior to any ND, since after TX a ND is often unnecessary. Also it probably isn't necessary to remove the tonsils because after the radiation they will likely be gone.

Multilevel precautionary node stripping usually is not an acceptable nor approved protocol these days and can lead to permanent undesirable side-effects.

A major CCC can precisely plan and deliver radiations treatments with pin point accuracy. This level of critical expertise and technology is seldom available at a community clinic.

Please go to a top cancer center. Even if you are able to combine some treatment with your local one, sometimes that works, you are going to miss something without consulting the doctors that see this disease all the time. Your husband is young, he'll go through treatment fine. Yes there are side effects to everything, but those NHI designated centers or CCC's know what it takes. You may have less "destructive" treatment there than at your local place.

I know it seems like a lot of trouble but believe me it will be worth it. You can have records sent, you can carry DVD's from CT & PET scans. People get second opinions all the time. You can sometimes get faster appointments with these places if you say you are considering having your treatment there rather than just a second opinion. Nothing should be more important at this time than getting this right. There is no way your local institution has more experience, or even adequate experience in dealing with your husband's cancer.

Best,
Anne

Let me repeat myself from my earlier post:

I would get his cancer slides tested for HPV which I am 70% certain will test positive. I'm also guessing here that he's a non smoker, if not that will change everything. Assuming non smoking I would then seek another opinion from a comprehensive cancer center who deals with HPV+ SCC tonsil primaries every day. My best guess is that he can avoid the surgery and just (not be belittle that Just word) do the concurrent chemo and rad. Whatever you do don't let some cut happy doc perform any cuttings until you get him tested for HPV AND get a 2nd opinion.

PLEASE heed my advice before you let any ENT, who is a trained surgeon, perform a radical neck dissection or even a partial ND. I am relatively sure he will test positive for HPV and would avoid surgery if in the hands of a comprehensive cancer center.

Yesterday's appts were informative. Interesting how when we left the radiation oncologist we were leaning for radiation-chemo no surgery. After next appointment with medical oncologist, we are now leaning for surgery with radiation with chemo as determined necessary. Obviously we have not a clue but still working to understand. The medical oncologyst works with a local university in Denver who he is referring us to for a second opinion. If the appointment is not soon, we may forgo even tho I am hopeful we can get in this week yet. Scary part of second appt was the information that the cancer is growing rapidly -- 14X surrounding tissue.
So, selfishly, back to the removal of all nodes... has anyone experienced the repercussions of edema from a total removal of all nodes in neck? I ask because at the age of 11 they removed all my lymph nodes in groin resulting in a significantly disfigured leg I have managed emotionally and physically. Kids at 11 can be quite cruel. Anyway, no pity part here -- 'lived' is key word. My nodes had been removed in anticipation of finding cancer, which they did not. So, just some understanding of why we are nervous about the removal of all nodes. It's that weighing treatment vs long-term life quality. Thank you for allowing me to be open and honest and not feeling like a real ignorant selfish person.

Hi ... first off head and neck edema is a little easier than that in the extremities. Gravity is the helper. When it is leg related it all gathers below the groin area and is hard to clear (same with arms - though it is easier to hold your arms over your head for a bit). The more you are on your feet during the day the more your extremities swell. With head and neck edema it works the opposite. I find I am a little swollen in the morning and as the day goes on the swelling dissipates. Also there is lymphatic massage that is great and helps especially during the first year. I would go for it once or twice a week to start and once I learned how to do it, I would do it three times a day at home the days I didn't go to see the therapist. I am no longer seeing the therapist, and do the massage myself once or twice a day. It makes a world of difference as once you can comfortably do the massage, it helps by building new pathways for the fluid to drain. This helps stave off some fibrosis, and swelling (I'm not very swollen at all now) and I've been doing it for 6 months. I had 40 lymph nodes removed from my neck. One was positive.

I know everyone here is saying your husband should get tested for HPV, and they're right, and if you choose not to do surgery that's fine too, but if your MO is telling you this is a very aggressive cancer, I would do the surgery. I know no one wants to be cut for no reason, but cancer that is spreading quickly is hard to catch and you want to get out in front of it. The best way in my opinion is to remove what you can, and then blast the rest. I know it seems like overkill if you only have one node involved and they remove 40 - however, just because they can't see and measure it on a CT, PET or MRI, doesn't mean that there aren't microscopic cells there. So cleaning house isn't a bad idea. A neck dissection for me wasn't a bad surgery, (I also had part of my tongue removed) but the neck dissection was mostly numb, and stiffness no real pain, both of which are being helped by physiotherapy, yoga, and acupuncture. I personally would prefer them to remove whatever cancer they can find, and then use rads and chemo as a support measure, than leave the cancer there and try to blast it while it's still trying to spread.
HPV related tonsillar, and BOT cancer responds more readily to chemo and rads, so finding his status out will help with this decision. However, time is VERY important if it is as aggressive as it sounds, so if you can find out the results of an HPV test, soon, and get in with a specialist this week for your second opinion, that's great, if not... I would make a decision and jump in with both feet.
the tumor in my tongue was well differentiated, the spread to my node happened within a month (actually about 2 weeks - I went from not feeling a thing to being able to palpate a 1.4 cm node under my neck) my node was (moderately differentiated), poorly differentiated (rapidly growing) can move even faster.

Mine wasn't HPV related, but I also had no precursors for the disease (no smoking NO drinking (of any kind), no drugs, and I'm a vegetarian!

So it can happen to anyone, what you don't want to do is end up chasing it. You want to get out in front of it. Find out if it's HPV related. If its not hit it with both barrels.

Good luck.

You really should have HPV testing before you commit to anything. All head and neck cancer is not best treated exactly in the same way. Some kinds need surgery first, some need radiation & chemo only. Regarding lymph nodes, they won't remove all his lymph nodes in his neck. Some of us--you can tell from our signatures how many lymph nodes we had removed, a bunch, but that is not all of them. Most of us who had neck dissections had it on one side only. Please do not jump into this without checking another doctor's opinion. I have no vested interest in whether or not you do or do not have surgery done where you are, or have radiation/chemo done there, or anything. I'm just not sure you realize all the possibilities that are out there. Mostly these tumors do not grow that rapidly--I'm not clear as to how this information was obtained.
All the more reason to be with a center that deals with a lot of oral cancer.

Also--understand surgeons like to perform surgery, radiation oncologists prefer radiation, your MO, I would want to know their reasoning as well. Not trying to pressure you, but be careful. Your MO may be exactly right. But whatever you decide you will not be able to redo, so check it all out.

Best,
Anne

Where in Colorado are you? If you PM me, I can give you the name of my surgeon here! My primary sight was my right tonsil. They operated to take out my tonsils and to biopsy the tumors on my tongue and neck. I didn't have the neck dissection. They felt that they could get rid of the tumors in my neck with the chemo. After 6 weeks of recovery from the surgery, I started chemo-induction therapy (Cisplatin, Taxotere and 5FU). After the first round, the tumors in my neck were gone! I had a total of 3 of these treatments and I was one of the very lucky ones as my ONLY side effect was I lost my hair after the first week. 2 week break after that and then I started on the 7 week radiation/chemo therapy. I had a feeding tube but still lost 70 pounds in 4 months (luckily, I had excess to lose!).