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.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan