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Esophageal Stricture from Radiation

Ed_PortOrange's picture
Ed_PortOrange
Posts: 110
Joined: Jun 2010

I'm 3 months post last radiation & Erbitux treatment for throat cancer, tongue and larynx and 3 swollen lymph nodes. Pet scan came back negative last week so that's a real positive. My problem is that I haven't been able to eat anything, even soft foods like oatmeal or mashed potatoes for the past six weeks. A swallow study last week showed I had a stricture and that it may take more than 1 treatment to correct the problem. Does anyone have experience they can share.

Thanks Ed

amy_evan2005
Posts: 42
Joined: Nov 2009

My husband Evan is currently going through the same thing. He has been out of treatment since Sept.09. Just in the past couple of weeks he has finally been able to start to swallow slightly. Before that it was Aug.09 the last time he has eaten by mouth. Check this board under "difficulty swallowing after radiation" & the esophageal cancer board under "complete esophageal blockage". These are a couple where I talk about his experiences. We will be willing to answer any questions you may have. It has taken alot to get him to this point.

Good luck,
Amy & Evan

Ed_PortOrange's picture
Ed_PortOrange
Posts: 110
Joined: Jun 2010

Thanks for the directions. I looked at the esophagus site but was only looking at recent postings.

amy_evan2005
Posts: 42
Joined: Nov 2009

When you go to site in search bar put complete esophageal blockage. I believe that will take you to it. I'm glad you found this site. We had no idea what to do or ask. Just from the things we learned on here we were able to tell them what we wanted done instead of asking them what to do. It speeded up the process greatly. If you don't like what your doctor tells you find one who will. We had to.

Good luck,
Amy & Evan

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

My mouth was very bad thru rads and I couldn't eat or drink anything for about five months. My mouth was just destroyed. When I finally did try to eat nothing would go down. Swallowing study revealed a severe narrowing and radiation damage. They dialated me the first time from 2mm to 9mm. I had a hard time and they went thru my peg tube the first time to stretch me out. It did not help for food. Still could not swallow any food. Still to tight. I was scared because they have to put me on a ventalator and I am hard to intubatr and I guess things got hairy with the proceedure. I was really scared but had it done again. Still not easy and it went a little better the last time. I have some limited success with eating mushy foods. They asked me if I wanted to try again keeping in mind the risks and my complications. When I said I didn't want to risk it again the doctor who was in the proceedure said she didn't blame me.

I also had a dialation further down a couple of years before my cancer. That one was more routine and no big deal. I guess that it is fairly common to have damage after rads. Should I not be able to eat at all again then I suppose I will have to risk it again. But ya normally it is a pretty easy proceedure.

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I see you had your thraot stretched sweetblood, but it didn't help, I feel i could breathbetter with this trach and the hole plugged, like dealing with too many exits...what caused your throat to feel small feeling? How ya Been? Havent seen you arounf lately..Dennis
P.S Mine was also caused per over radiation

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I am okay. How are you? Have the hyperbaric treatments helped you at all? My internet service still stinks. I have been peeking in on my iPhone here and there.

I can't say my throat feels any different. It just doesn't have a very big opening for stuff to go down. If I eat macaroni salad (mixed with mushed avocado seems to make it slide down better) I can only chew one elbow macaroni at a time and it takes four to five little swallows to get that one noodle down. If I try to swallow more than that tiny bit I choke. I tried salad the other day but the dressing burned and I couldn't chew up the pieces small enough to swallow. I have always hated lettuce anyway. Lol. But I try. Ate two little mushroom ravioli the other day. I put alfredo sauce on it. Shoulda just did butter and some truffle oil. The saltiness in the Alfredo burned my tongue. I so want non mushy real food. Yesterday was hard. My step moms family was visiting and I sucked it up and sat at dinner with everyone. They were eating steak, fries and salad. I had half an avocado and potato salad. :( Had to sit there and smell it, listen to how good it was. Then Aunt Rose is like, what's with u don't u like steak? Grrrr. This is why I stay in my room. I didn't get much down. It was too hot and muggy and I was getting cranky and uncomfortable. Then they took out the camera and wanted pictures. Did not want to take any and my grandmother was saying I was being b@$(y. I am dealing with some withdrawal symptoms because I stepped down on my Fentanyl patch. So yeah. I am crankier than usual. At least the relatives seem to think I " look better and less sickly than last year". Yea. Lol.

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I am okay. How are you? Have the hyperbaric treatments helped you at all? My internet service still stinks. I have been peeking in on my iPhone here and there.

I can't say my throat feels any different. It just doesn't have a very big opening for stuff to go down. If I eat macaroni salad (mixed with mushed avocado seems to make it slide down better) I can only chew one elbow macaroni at a time and it takes four to five little swallows to get that one noodle down. If I try to swallow more than that tiny bit I choke. I tried salad the other day but the dressing burned and I couldn't chew up the pieces small enough to swallow. I have always hated lettuce anyway. Lol. But I try. Ate two little mushroom ravioli the other day. I put alfredo sauce on it. Shoulda just did butter and some truffle oil. The saltiness in the Alfredo burned my tongue. I so want non mushy real food. Yesterday was hard. My step moms family was visiting and I sucked it up and sat at dinner with everyone. They were eating steak, fries and salad. I had half an avocado and potato salad. :( Had to sit there and smell it, listen to how good it was. Then Aunt Rose is like, what's with u don't u like steak? Grrrr. This is why I stay in my room. I didn't get much down. It was too hot and muggy and I was getting cranky and uncomfortable. Then they took out the camera and wanted pictures. Did not want to take any and my grandmother was saying I was being b@$(y. I am dealing with some withdrawal symptoms because I stepped down on my Fentanyl patch. So yeah. I am crankier than usual. At least the relatives seem to think I " look better and less sickly than last year". Yea. Lol.

Ed_PortOrange's picture
Ed_PortOrange
Posts: 110
Joined: Jun 2010

Will have my stricture dilated but was told it will take two attempts to open it to 18mm. I have been able to get yogurt and other soft foods down with multple swallow attempts and moderate throat pain. I'm not sure if I was lucky, but I went through my 6 weeks of rads and erbitux without a PEG. I'm feeling better but not gaining any weight, lost 45 lbs at the low point.

Tottenville Ed

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I think I had the first in October and then the second in January. But you may not need that much time. As I said my mouth was and still is a mess. It's been over a year since I stopped rads.

debbiejeanne's picture
debbiejeanne
Posts: 2507
Joined: Jan 2010

ed, great news on the scan. I am 8 mos post trmnt and I'm able to eat now but the food still gets stuck sometimes even today. It can take as long as 20 min for me to get it unstuck. I think you just have to be patient and believe me, I know how hard that can be. You are in my prayers, hang in there.
God bless you friend,
debbie

santa6
Posts: 29
Joined: Oct 2009

Ed, odds are you'll be fine in time.

I had neck cancer with primary source unknown. So, they had to blast everything from below my eyes to my collar bones. I also had Erbitux. Treatment completely devastated my mouth, gums, tongue, throat, esophagus,etc. Also wiped out all saliva which further complicates eating/swallowing.

Good news is I'm doing great. I'm 8 months out of treatment. Started trying to eat at about 4 months out. It was very tough and I was convinced I would live the rest of my life with the PEG. I started seeing a speech pathologist for exams and he gave me a number of exercises to do to get things stronger and stretched out some. To be honest, as frustrated as I was, I only did the exercises less than 50%. But I forced myself to try to eat every meal, my taste came back to about 75%, I choked a lot and blew very strange things out my nose, but in time got to the point where I didn't use my tube for 4 weeks. Had it removed(that's an experience) and eating gets better every day.

There are some things I just probably will never eat again, like popcorn, alcohol, chicken is tough for some reason, chocolate burns my throat, ice cream hurts my teeth, but beyond that I am eating really a large portion of what I used to eat and I'm perfectly content - even without the saliva - just have to sip with every bite and pay attention to what I'm doing.

You'll be fine before you know it.

amy_evan2005
Posts: 42
Joined: Nov 2009

Hello everyone,
Evan is swallowing small amounts still, but at least he's swallowing. He has a few different problems with his. He still has too much saliva and it is so thick he still can't swalllow it. Swallowing food is easier than swallowing liquids for him. He can get a bite or two of something down, but hurts throat alot still. Most drinks burn his throat. He can't swallow things like pudding or applesauce very well, but ate two nutterbutter cookies today. Milk products seem to make saliva thicker. Right now, he pretty much takes a bite or two of my food whatever it is,to see if he can get it down. He was dilated several times in about a two month time period. Now we are waiting a couple months to see what happens now that he is finally able to swallow some.
Take care everyone and good luck to all.
Amy & Evan

Ed_PortOrange's picture
Ed_PortOrange
Posts: 110
Joined: Jun 2010

Glad to read that Evan is doing better with eating. I had a significant improvement after my 1st dilation, I could swallow my pills without crushing or cutting. Also, I am able to eat soft foods without it getting hung up in my throat. The 1st dilation opened my esophagus from 11mm to 15mm with the norm being about 20mm, per my gastro doc. He's hoping to get me to 17-18mm tomorrow and feels that may be about max with the amount of scar tissue present. I still had throat lesions that were healing and a swollen epiglotis 15 days ago when the first procedure was done. Still drinking my 6 Ensure +'s each day plus some softer foods to maintain my weight, have not gained yet. Hoping I can eat more normal after tomorrows procedure and able to cut down on the Ensures. I'll post an update next week.

Read posts daily and I'm pulling for everyone to show steady improvement. It took awhile for me to realize that I wouldn't feel like myself the day after treatments ended. It's almost 4 months now and my body is taking baby steps to the finish line, but it is progress.

God Bless
Ed

DLS5419's picture
DLS5419
Posts: 34
Joined: Jun 2010

My mom is having an endoscopic dilation on July 23...they are getting a pediatric endoscope for her and told her she should be fine by the next day. Is it painful? Thanks
Dani

debbiejeanne's picture
debbiejeanne
Posts: 2507
Joined: Jan 2010

dani, how did your mom's procedure go? I hope it went well and she won't choke any more. Please let us know.\
God Bless,
debbie

Ed_PortOrange's picture
Ed_PortOrange
Posts: 110
Joined: Jun 2010

Just got home from my second dilation and they were able to open me to 17mm, which I'm told is good. The last time I had it done the pain was minimal for a day or two and easily masked (hate that word) with Magic mouth wash. I still have significant swelling in the upper throat that will go down with time, per the gastro doc. He says I will need to have the procedure performed again in the future. Everyone is different so it could be 6 months to a couple years or more. He says I'll know when swallowing becomes more difficult.
Since your mom is going to have a pediatric endoscope she is starting off much more restricted than I was.

Wishing you all the best, keep us posted.
Ed

debbiejeanne's picture
debbiejeanne
Posts: 2507
Joined: Jan 2010

Ed, unfortunately we don't realize how much time after trmnt is finished for our throats/bodys to be even close to normal. I am nine months past trmnt and I still have food that gets stuck in my throat. It sometimes takes me 20 minutes to get it unstuck. It is scary but at least I can breath. I'm just afraid that if it moves, it could stop my breathing, depending on where it moves to. Just another worry...lol. Anyway, I hope your throat continues to get better.
Evan, I hope your throat also continues to get better.
God Bless you all,
debbie

maria uk
Posts: 3
Joined: Sep 2013

Hi Ed

My husband finished radiotherpy in June. He is back in hospital with a stricture, they did biopsies last Wednesday, still waiting on results. More tomorrow behind his tongue. So scared right now, fearing the worst, more cancer.

Kind Regards

Maria

lornal's picture
lornal
Posts: 255
Joined: Sep 2013

Maria, you probably want to start a new discussion.  Under the Head and Neck Cancer page, there should be something at the top for starting a new forum.  There are many out there that could provide input of this happening shortly after treatment. 

I am 6 years out of treatment, and last summer I started having problems swallowing.  This year, the GI doc determined I have a stricture - and I have since had 9 dilations, and ended up with a feeding tube.  None of the doctors, though, did or recommended a biopsy.

 

 

maria uk
Posts: 3
Joined: Sep 2013

Thanks Lornal, Iwill do that.

My husband had a nasal gastro tumbe inserted last week while sedated for biopsy, they had attempted 5 times previously but unsuccsessful due to stricture.

I assume the biopsy is to check for more cancer, think they do this for everyone who has a stricture over here.

Wishing you the best of luck

 

Maria

hwt's picture
hwt
Posts: 1970
Joined: Jun 2012

You only mentioned mashed potatoes and oatmeal. If not made exactly right, both of those can be pastey and hard to eat on a good day. Might want to try expanding your choices. Several of us have found milk helpful too.

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