Well I was back in Boston today to see the speech pathologist at MGH I was referred to by the ENT at Mass Eye and Ear who did a modified barium swallow on me (I had had another one of these locally in Ithaca about 6 mos ago). It was a VERY worthwhile visit (thank you again, Cathy G, for putting me in touch with the ENT who referred me to her), although somehwat surprising.

I had been under the impression that I would find out my epiglottis was shortened (and it is--almost definitely due to radiation she said) and maybe I was having problems swallowing because of that, as well as lymphedema on the base of tongue, restricted range of motion in my upper tongue, etc. and that she would then talk to me about what I needed to do in terms of exercises that could help and would probably tell me what I had heard from the ENT which was that even with exercise I wouldn't get most of my swallowing function back.

Instead, during the barium swallow, she saw areas of my esophagus that had strictures--actually three areas and said that basically I am NOT doing anything wrong in terms of not having tried to swallow enough, or not doing the right exercises, but, basically, I can only swallow small sips of liquid because that's all there's an opening for! Everything else backs up like stuff you try to rinse down a clogged drain and then I have problmes with possibly inhaling it. She said that exercises won't really do me much good as long as this is the case--I need surgery to widen the espohagus where these strictures are.

Apparently this surgery has some risk associated with it--of actually puncturing the esophagus. They actually won't do it at MEEI because of that, but she referred me to a head and neck surgeon at Dana Farber who does do it. I just looked her up on the web and realized that she is the ENT that consulted on my second opinion at Dana Farber over a year ago. So I will call her office tommorrow and try to set up an appointment for a consult. It looks like the surgery probably wouldn'thappen until my Spring semester is over anyway, which is good, and I may have to have it more than once, which is not good but I'll do what I have to. This speech pathologist said that although there's some risk, it is effective.

I am actually relieved in an odd way to know there's surgery that might fix a lot of the swallowing problem. I may still need swallowing work with a speech pathologist after the widening, but the picture seems a little more hopeful to me (even though the risk part is scary).

There's one more thing I wanted to bring up here too which is she said that she has seen MORE of this type of problem with people who have had IMRT. Apparently if the IMRT is not programmed carefully to avoid the esophagus, it is more likely to cause this sort of damage. She said she'd be willing to write a note about this to my RO--and I may take her up on tnhat offer, or I may see if my local ENT can have a word with rad medicine at the hospital once he gets her report.

I know there are probably some folks thinking "I told you so" because I got my IMRT locally but, even though it was local, the radiation oncologist was from Roswell Park--a CCC--and the rad medicine facility I was treated at is a satellite of Roswell Park--so it really wasn't all that clear I wasn't getting top notch care and, given that I'm clearly not the first patient this speech pathologist has seen with exactly this problem from IMRT, I get the sense this may be a problem for a lot of radiation plans. It is certianly an argument for, if you can, going to one of the real top top places for treatment with an RO that has real expertise in IMRT for head and neck patients.

Anyway, it looks like there's more surgery for me down the road and that it might have some scary risks associated but I'm hopeful (I think that's just my nature though).

Nelie

Nelie,

I had two endoscopies with dilation performed by a gastro--intestinal doctor in Dec 05 and they were a piece of cake! And they did dramatically improve my swallowing ability. I saw no risk. It was out patient and they sedate you first. I don't even remenber having a sore throat. Like you, there is some scar tissue there due to radiation.
All I know is that I passed the barium swallow test much better after these treatments. This after a year of therapy and Vital Stim. I too was told about bad effects before I had them done but I'm very glad I went ahead. Hope this helps.

Jim Haucke
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SCC rt lat tongue dx 9/03;surg 11/03;recur 1/04, dx SCC stage 4 anterior 2/3 of tongue and pharynx; surg 12 hrs 2/04 subtotal glossectomomy, forearm flap, pharyngectomy; PEG (still have)I now use a syringe for oral intake as tongue flap is sewn to floor of mouth & immobile); 36 rads spring 04

Jim, Thank you, that is encouraging. I'm still adjusting to the news I need this and am alternating between hope that surgery could make a huge difference in what I'm able to swallow (and I would SO like to be able to eat again) and fear that, if there is some risk of somehting going wrong, something WILL go wrong in my case (not an unreasonable fear given how many things HAVE gone wrong in the last year or so).

I'm also frustrated to learn that this speech pathologist (who does nothing but treat patients with swallowing issues after head and neck treatment) that she believes the IMRT *caused* this. I definitely want them to know this at Radiation Medicine (which is connected to Roswell Park). I'm wondering if anyone has any thoughts on how I can best make sure they not only get this message but that it is duly attended to (as in someone reviews the radiation plan and makes sure that isn't done again). It seems to me it would be best to talk to my ENT here about it (he will get a report from the speech pathologist I saw) and make sure he follows up on it with them. It should be of real concern to him since I know he was someone who really wanted a good radiation medicine facility here and he works with them, refering all his cancer patients there.

Nelie

thanks on the heads up on the esophogus issues associated with IMRT. i'm getting my simulation done this coming monday and I very much plan to ask them about it.

Nelie:
I had similar problems with everything you described. I'm much better now, I wrote you before. I don't remember asking you or if you mentioned that you had hyperberic oxygen treatments. I had 29 and they cleared up the strictures in my throat. With a number of dilitations and doing the shaker exercise, I can eat just about anything, although I still have to drink water to 'get it down'.

Jeff

Jeff, No I haven't had hyperbaric oxygen. I'm willing to have it if my insurance will cover it. We'll see what the surgeon at Dana Farber says (I have an appointment with her June 1st, that's the earliest I could get in and I'm very impatient right now). Can I ask how long you had all this stuff done after radiation? I'm worried that because things have gone on for so long (because no one noticed the strictures when I had the first modified barium swallow done over 6 months ago), I may have less hope of recovering much swallowing function.

Warren, If I'm recalling right you are getting treated at Sloan-Kettering? My guess is you'll be fine there. It seemed clear from what this speech pathologist said to me that this isn't an inevitable outcome of IMRT, it's an outcome of some types of (less than expert) radiation plans.

Nelie

Nelie

I had IMRT at UCSFCCC and have no swallowing problems at all. They do a lot of H&N patients there and I have a followup next month so I will inquire.

Nelie (and others):

The critical issue with IMRT and any targeted radiation is the radiation planning. I had a long talk with our RO at a recent HNC Conference at Hopkins, and he emphasized this. His point was that how the planning is done can have a drastic impact on the extent of side-effects, irregardless of equipment. He referred to the paper given at ASTRO a couple years ago where the same "test" HNC case was given to a large number of radiation oncologists, planning for IMRT treatment, and the plans differed widely.

IMRT can deliver more dosage to the target area but can also more precisely avoid non-target organs and tissues -- but that is where the planning comes into play. Not only the experience of the oncologist but also, his or her bias towards sparing, say, the parotid glands. Some doctors may well prefer to radiate a larger field, especially if there is an unknown primary, feeling that hitting all potential cancerous areas is the most important goal. But it gives the doctor more ability to avoid non-target areas.

Most of the folks I know who got IMRT have not had any strictures but they are not unknown -- Barry was checked for that both with his swallowing evaluation and with endoscope but one of the cautions his therapist gave him up front was to call her if he felt things were getting stuck in his throat -- this could be due to swelling (edema) or to a stricture. Actually, he did think this might be a problem a couple months ago but this has gradually resolved, and an exam last Friday showed no strictures.

His ENT pretty much said what James did -- usually these can be solved with relatively minor surgery -- she's the doctor who had radiation for HNC herself and knows where it's at!

Gail

Neile,
I finish radiation in Feb 04, dilitations starting in June 04 and hyperberic o2 in august 04. I had 29 treatments, 6 days per week. About a month later, my GI doc said the strictures were gone. I had a couple more dilitations and was ok for 14 months. I never was able to swallow anything until Jan 05 after starting the shaker exercises. I had another dilitation in Jan of this year and will probably need them every year or when things start to get stuck.
Jeff

Jeff, Thanks for the info. was there any problem getting your insurance to cover this kind of treatment? My insurance has been pretty good about things so far but I still worry. Nelie

Nelie,
I had regular radiation at MD Anderson, and once I could begin to swallow again...stuff got stuck further down. At first they seemed to have misdiagnosed it at MDACC. Then during one of my barium swallow studies, they took the X-ray a little further down and observed the stricture in my espohagus. Once they finally figured that out, I went in for the dilation, which, as described above was no big deal. I had it 2 or 3 times, and then one of gastro-entero. docs (who, by coincidence had been a previous doc of mine for some stomach problems before he and I came to MD Anderson) sent me for another barium swallow test rather than dilating again. It showed all clear. This has been a couple of years now and I have had no more problems whatsoever with my esophagus.

Also, interestingly enough, just last summer I realized that I could swallow a whole lot better than I thought I could. I used to travel with several quarts of my favorite soup and numerous bottles of Boost. Eating regular food was so tedious and unrewarding that I would hardly bother. But then something happened...I don't know if it was that I physically improved and adapted, or just got determined to do it...but suddenly I could eat bread, pizza, steaks, hamburgers, and even popcorn, as long as I have water to wash it down.

Believe me...this improvement has made me so much more free and has made life so much easier and better. I can now travel freely, and sit down to lunch or dinner with people who are not aware of the cancer and eat almost like a normal person.

Best of luck with the dilation..

Danny G.

Thanks Danny,

I'm getting very encouraged from the stories here. I worry that I've gone so long without swallowing normally (about a year now) that it will be too little too late. I'm VERY happy to hear the dilation itself was no big deal since I'm really a coward about more uncomfortable surgery, and it's also encouraging to me to hear you are back to eating "almost like a normal person". Yeah, it's the issue about wanting to able to travel freely and eat with other people without having to explain why I can't eat normally. Both the social aspect of eating and travel are important parts of my life and having them disrupted is a definite quakity of life issue.

Right now I have dreams about eating things like pizza and pot roast and I am SO hoping that this won't be in the dream realm forever. The way I feel right now is if I HAVE to accept this as a lifelong disability, I can and I'll still enjoy my life. But I WON'T accept it as lifelong until I know I've done everything I can to get back as much swallowing ability as much as possible.

Nelie

Nelie, my 82 yo neighbor man has had dilation two or three times for a reason other than cancer tx. He drives himself to the doctor, then back home. No problem. Hope this can calm some or your anxiety.

Hi Joanna, My grandfather also had it done a couple of times when he was in his 90s. But I understand it's much less risky for people who haven't had radiation. Even old folks!

Well doggone it, Nelie. I thought I could hand you a good night's sleep! Absent any facts, I just feel strongly that your problem is going to be solved. If pulling for you from the left coast has anything to do with it, your cure is in the bag.

Joanna, I sure hope you're right. All that pulling from the left coast can't hurt........I appreciate it!

Nelie,
Regarding driving yourself home from the dilation...I don't advise it. Each time I had the dilation they gave me Versed, that sedative which makes you forget what you have just gone through. So I would have my mom or sister drive me home, and on the way home I would typically ask some simple question like "Did you guys have lunch yet?" about 4 or 5 times. Also I would forget if we stopped on the way home for anything. It actually makes you feel kind of good!

Best of luck with your pot roast and pizza. When I could not eat, I found it easy to accept. I could look at a plate of brownies or something and since I knew that I could not eat it, I just didn't care. Once the sense of taste returned and I was able to eat certain foods, I started looking forward to meals just like in my pre-cancer life.

Keep us posted,
Danny G.

Yeah, Danny, that's the way I am now--I look at things and usually, since I know I can't eat them, I just don't care so much. The way I put it to myself is that it's like I'm an "air fern"--I don't eat like all the other plants around me.

Every now and then, though, it gets to me. We had some friends over for dinner--my husband made his homemade pizza and there were two kinds--both just tantalizing combos of stuff and he had gotten appetizers that were all my favorites (his too) and I hadn't filled up through the tube feeeding as they were munching on appetizers. Anyway, when the pizza was done I just felt like I wanted to cry I wanted it so much!!

The first battle is just to get where I can swallow well enough to get off the PEG. But beyond that, I hope I get to where you are someday, even though I know I might not.

Nelie

My speech pathologist here, when he heard I was having this surgery, also mentioned I should be sure they gave me an amnesia drug after. So I definitely don't think I want to drive myself--I'll have both my parents and my husband around to drive me.

Here's the thing that bothers me about that: WHY do they want to make you forget!!?? I know this is one of those "conscious sedation" operations. I've had two other procedures where that was supposedly the case--a colonoscopy and my PEG insertion and I remember the colonoscopy vividly--its was way too much consciousness and not nearly enough sedation and the PEG insertion I also recall gagging as they put the thingie down my throat and a LOT of pain when they cut into my stomach. I didn't have an amnesia inducing drug after and so I know those two things are seriously uncomfortable as they are happening. So heading into this surgery, it's not reassuring to me at all that they want to give me a drug that will erase my memory of what happened afterwards. Is it going to be that awful as it's happening? Just because I wont remember it afterwards won't change that, right?

Sorry. Sometimes I just think about this stuff too much but the "don;t worry you won;t rememebr a thing" line never reassures me. What I want to know is I won't FEEL a thing!

Nelie,
It's not awful at all. They would wheel me in, put oxygen in my nose, turn on the I.V. and next thing I knew I was waking up after it was over. What I had was not surgery...they just stick a probe down there and dilate or stretch the esophagus.
Believe me, even getting the scope down your nose during routine doctor visits is worse. I have no memory of anything but the before and after, both of which were not unpleasant at all.

Best of luck...I too, spent many months tube feeding while others ate, so I know how you feel.

Danny G.