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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.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
Joined: Feb 2005
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Nelie Offline OP
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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


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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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.

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Nelie Offline OP
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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!


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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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.

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


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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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.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
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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


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
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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!


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Sep 2002
Posts: 642
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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.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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