I am now three months "post treatments", and I can say it does get better. Keep doing what your doing, swallowing as much as possible, and trying the foods you use to eat.

I have yet to get a swallowing test. At the stage you were at, I had the same effect. I felt like I had weak swallowing power, weaker than the week I finished treatments. I figured that with "exercising", it would get better (plus, I read some of the posts on this board). And it has. I am nowhere near where I was before all this. But I have learned all those basic things my mother always said, like "Chew your food". I also use a lot of water when swallowing, but recently subsituted cold milk this week (yea!!!!)
When I look at it day to day, it appears like there is little progress, but week to week, I can see progress.

Please keep the updates coming. I am interested in how the swallowing test goes, and what comes out of it.

Your a real trooper.
Mike

The next TWO days (Thur/Fri) should be very interesting.

I have the swallow test and catscans of head, neck, and chest scheduled tomorrow and the following day a visit to the ENT to see what's what about neck disection, etc.

Been looking forward to these tests and visits for a month now. Time to find out how the treatments did and to get a few issues looked at and hopefully taken care of (like real hard swallowing problems lately).

Wish me luck.....

Good luck...one of the hardest things is waiting and it's almost over.

Hopefully you will have good news to report by Friday night.

Jerry

we are anxious to hear about thurs/fri

your the man

Gary...Hope you got good news..let us know how you are.
All my best, Kerry

OK...had my big tests and ENT dr visit the past couple days and here's what came out of it.

On the swallowing video test. They start you out with super thin liquid to drink...then a little thicker, then a little thicker, up to a 'pudding' consistancy. Went smoothly and actually did pretty good with all the liquids and even the pudding on getting them down. But, had major problem with last one where they give you a small grahm cracker with something like a thick marshmellow spread on it. Just couldn't handle that one. Had to to cough it back up. Seems like my passageway down the throat has narrowed a bit and a 'dialation' may be in order.

Then had my ENT visit the next day. He looked me over and was pleased with the healings going on. Left the room to take a look at my catscans the hospital did the day before (seemed like longest 10 minutes of my life). Came back with pretty good news. Looks like 99% negative on catscans. Some small activity may still be happening in throat area where I had big lump at start of all this and not 100% sure on base of tongue mass as far as being wiped out completely. So here's where we go from here.....

Have neck dissection surgery scheduled about 7/11 and at that time will also do the 'throat dialation' PLUS take some biopsy's of the tongue to see what's what there and handle EVERYTHING while I'm on the table. If he does find something on the tongue left...could 'possibly' cut some of the tongue out also. (Just a possibility). In other words...THE WHOLE NINE YARDS all at once while they have me out and on the table. Which is fine with me. The sooner I get this done the better. He's talking like it could be about a 4 or 5 day hospital stay??

So...not the glowing 'you're totally cured' and don't come back message. But, sounds like they have a plan to finish the job via surgery,etc.

Havng some apparent activity on a CT scan so soon after end of treatment is not at all unusual, so probably not a reason for concern. Did you also have a PET scan at same time? Most top CCCs now do a fused PET/CT just to avoid "false positives" which are more common with PET or CT alone -- which can lead to unnecessary surgeries. (They are also not unknown with fused scans, which is why doctors also rely on other tests.) For example, our ENT said, if the PET/CT showed a suspicious area, he would order an MRI and then, probably also wait a month a re-do PET/CT to see if the suspicious area healed (or had changed). And a biopsy if the area were accessible (such as the base-of-tongue area). This before any surgery would be planned.

Re the latter, BOT surgery can cause quite a few problems later with swallowing and speech -- ask about the possible side effects and be sure that you have a therapy plan in effect if the surgery ends up being done.

Did they give you exercises to improve your swallowing? Sometimes this is all that is needed -- but they may take months to show real improvement. My husband also had a problem with the cracker during his swallowing test, but he didn't have a stricture, it was weakness of swallowing muscle bundles plus rawness of his throat which was the real issue. 3-4 months of exercises pretty much resolved the problems...having said that, the dilations folks on this forum have reported seem to be relatively straight-forward and relatively effective.

Gail

Garyock, good luck with your surgery. The neck dissection part isn't too bad to deal with, except for the fact that you will look pretty scary for several days and may have some pretty impressive swelling! John recovered from the dissection pretty fast. Amy

Gary - All in all sounds good. Couple of questions. Are you seeking a second opinion for the speific plan of action. I am a huge proponenet for a second opnion as it gives you piece of mind and fresh perspective. Even if you sought multiple opinons initialy, you now have new data for review by different doctors. Second line of qestions is on neck disection and partial glossectomy. Neck disection should be non-controversial so prety sure all docs will recommend removal of any affected nodes and perhaps add'l removal of nodes close by affected nodes. ASk for a drainage tube to be inserted if they can as it really reduceses swelling. On the base of tongue, this seems more complicated to me and could involve reconstructive surgery depending on size and location. Given that they have already radiated this area it will be that much more important that they remove the cancer with ample margins. I worry aout doctor's ability to plan a very complex and quality of life important surgery on the fly. You may very well want to have input in the ultimate decision. 2nd opinion key here as well and if he plans to do it all in one surgry there would be no ability to seek second opinion.

Gary - I know you have been through a great deal up to this point and its very human nature to choose the path of least resistance and just get this thing finished up without doing alot of challenging. I'm far from an expert on base of tongue issues so keep that in mind. We are all here to help you gt through this last bit. Send me a private message and we can talk.

Good luck buddy and the finish line is approacing

Actually neck dissection IS getting a bit controversial and by no means do most oncologists recommend them. They are not done at Sloan-Kettering (considered #1 CCC in USA) and also, are increasingly not done at Hopkins. When we went to Sloan for 2nd opinion, (we agree with Warren, these are important!) top MO there told us MD Anderson also doesn't do ND routinely either, but I have no direct knowledge on this.

Reason is probably because some recent studies have shown that although ND improves local control by about 5-10%, there is less evidence for a long-term survival benefit. (Our RO said "no evidence" but some studies have shown a benefit albeit a modest one).

Getting a clear answer on benefits of post-treatment surgery may be complicated by the fact that such studies probably include patients who have smoking-related disease with others who have HPV-induced disease (an increasing proportion of the oral cancer population). These cancers seem to respond differently to treatment and also, differ in their tendency to recur. This would really muddy the data...

My husband declined further surgery (he had had a pre-chemoradiation tonsillectomy which was his primary. ENT would not touch the base of tongue and said chemoradiation should take care of it.) Obviously if the post-treatment scans had shown a problem there would have been a different decision, although not BOT surgery. For this area they said they might consider brachytherapy -- interesting...

Treatment recommendations reflect the training, experience and professional outlook of the doctor (or team) and, as we see repeatedly on this forum, they do not all agree!

In any case, you are near the end, Gary -- good luck and hang in there! It WILL get better!!

Gail