My husband had his last chemo/radiation treatment 3/10/06. 10 days ago his ENT had a barium xray done which showed an 8 centimeter (4 ") stricture at the top of his esophaus.He had been saying he couldn't swallow even a sip of water without great pain and it would come back up for weeks.This past Wednesday the gasstrointestinal surgeon tried and failed to find an opening to dialate his esop. Today the ENT surgeon tried again under general anathesia and couldn't do it. She and the radiation oncologist are saying wait a month and they will try again with an oral surgeon going in thru his peg tube and going up through the esophagus and at the same time the ENT will try again from the top down. She said to wait and eventually they should be able to dialate . She also said the best outcome will be that he would only be able to eat soft foods. Our treatment center is in a rural area .HELP. Should we wait as they are saying it is still early and healing time may improve this problem or should we get a second opinion now because waiting could make it worse. Where do we go? CCC or ENT?

Jordan, I am sorry not to have any answers for you, but I am replying to bring this back to the top so that people who do have answers will ring in.

My husband is in the same position. We were finally sent to Emory and they painted a very bleak picture. He will be having the procedure June 27th. (The Ent will go down his throat and the Thorasic Surgeon up his feeding tube.) The Ent told us if we had come 6 weeks earlier the scar tissue would be easier to work with. My husband's last radiation was 2-03-06. My advice would be to get a second opinion ASAP.

sybil

My esophogus has been continuously getting better and I am nearly three years out of tx. It is my observation that the surgeons blame whatever factor they cannot control on timing - too soon, too late. If they can get you to believe this problem is caused by you coming to them at the wrong time, they get a lot of the burden lifted from their shoulders. You get to them when you get to them. Make them deal with it as it is now, not as they would like it to be.

My swallow has never completely recovered. I can drink malts and things thickened with gravy, but not free liquides like water or juice, and not solids of any size. I live by my peg tube and though I don't like it, my nutrition is probably better now than its ever been. My meals are fast and easy. I can now dominate conversation at the supper table, and talk while I'm drinking....! Best of luck with those procedures. Be strong. Tom

Thank-you Tom for your advice. This disease is so hard to understand. When my husband was first diagnosed both his Ent and Rad. Dr. said his cancer was curable. I think back and we were so naive. They both said the treatment was a rough one but he should do just fine. Little did we know. And finally to go through all of the treatment and then find out he can't swallow, was hard to grasp. That was never discussed. I am so very grateful that he is alive and you give me hope that life can resume, maybe not as it was but a new way.

Good luck to you and will let you know how it goes.

sybil

Sybil and Tom- Do you both have esophagus strictures from Radiation and how long or big?? Tom - what did the doctors try?The Radiation dr. said the amount he wasxposed to was well within rec limits.Do we go to a CCC like Memorial Sloan Kettering or John Hopkins for ENT?When I was reading for answers someone one the site talked about Hyberic o2 treat metns.
Sybil- I agree we werer never told this could happen, We thought once this terrible treatment was over there might be complications but nothing like this.My husband never smoked and maybe 6 times a year has a margureita or beer. he had perfect health.
I am so sad. he lives to eat.
SCC dx 11/9/05 stage 4a, rt tonsil,met to lymph nodes. T2N2M0. finished treatments 3/9/06. 2 induction chemos and then 1 wk for 7 weeks concurrent with 35 rad IMRT.

jORDAN,
I AM SO SORRY YOU AND YOUR HUSBAND ARE GOING THRU THIS AFTER ALL YOU'VE BEEB THRU ALREADY. I WORRY ABOUT THIS WITH STEPHEN AS SOMETIMES HE HAS A SIP OF SOMETHING AND IT BRINGS ON A GAGGING OR VOMITING ATTACK. WE HAVE A VIDEO SWALLOW ON JUNE 7TH. WILL THEY BE ABLE TO TELL IF HE MAY NEED THIS PROCEDURE IN THE FUTURE THAT YOUR TALKING ABOUT? I FEEL SO SAD TOO. MY HUSBAND LOVES NOTHING MORE THAN TO COME HOME AND HAVE HIS BUFFALO WINGS AND A BIG JUICY CHEESEBURGER. I WOPRRY THAT HE WILL NEVER HAVE THESE THINGS AGAIN. IT BREAKS MY HEART. I SUPPOSE IT IS A SMALL SACRAFICE IN THE GRAND SCHEME OF THINGS BUT THERE ARE SUCH FEW PLEASURES IN LIFE SOMETIMES...

I am in the same position--except I have three stictures going to see a surgeon in Boston this coming week who hopefully will do the surgery and hopefully it will at least allow me to get off the tube. I'm very frustrated since my first modified barium swallow was done at the hospital here in October and they missed the strictures altogether (although they were there on the video--I saw them myself when I took a copy of it for a second opinion and another bariujm swallow elsewhere). It's been almost a YEAR since I finished treatment and I'm really afraid someone will tell me it's too late for the surgery to do any good. I also was not even warned that I might have permanent swallowing problems (and boy do I miss real food sometimes)!

The good news is that there are several people here who have had surgery to remove strictures and widen their esosphagus and they have had lots of success with that surgery. So keep hoping.....

Jordan, where are you in New York State? Is tour "rural area' anywhere near my rural area?

Nelie

Kerry-
Gil had a modified barium swallow x-ray that showed the sticture. Then the gastroenterologist surgeon did a post upper endoscopy that failed.( couldn't find an opening. This past Friday the ENT sugeon did a largnect?/ which would have inserted a ballon. This failed also. I'm sorry about the spelling.

Nellie-
We live in Gilbertsville about 90 minutes from Ithaca and about 50 minutes from Binghamton. I think I read that you were going to Dana-Farber in Boston? Why there instead of Sloan -Kettering?I don't know if this is a cancer hospital issue or an ENT issue. The ENT said that there is surgery available but we should wait 2 or 3 years to allow him to recover/heal and also to be sure the cancer doesn't reoccur. I know the statistics say there is a 70% risk but I'm concerned about his quality of life. Also this ENT is saying (see above) but I'm convinced going somewhere they treat many would be better. What kind of surgery are you having?. Is there any way I can communicate with these other folks?I was hoping to hear from you but had to idea how to contact you.

Thank you for writing.
Kerry -
Be proactive if they find a sricture. I do believe most are able to be dialiated and even though it may take more then one time they are successful. I would also get referred to a speech therapist. Even without scar tissue there are many things the therapist can do to help our loved ones swallow without pain and again sooner seemes to be the key word here. My daughter is a physical therapist and when I said Gil's jaw was bothering him ,she had me get a referral and was horriifed that one wasn't a part of his pre treatment plan to let us know what to watch for.

I'm going to Dana Farber because I have family and several friends around Boston and so I have a free place to stay if I have to stay a few days and people to come visit me if I have to be in the hospital. New York city is expensive (and so's Boston if you don't have people you can stay with). Or that's why I went there originally for a second opinion on whether I needed radiation over a year ago.

This time, a few months ago I was at a point where I just wanted to see someone who had some real expertise in treating swallowing problmes of people who had gotten radiation because I didn't feel like what was happening here was making any progress (turns out that's because I had strictures that they had missed seeing so all the exercises I was given were not doing much good) and I got a referral through someone on this board to an ENT at Mass Eye and Ear in Boston, who then referred me to a speech pathologist at Mass General who specializes in treating patients with swallowing issues from treatment for oral cancer. She did the seocnd barium swallow that showed the strictures, but Mass General won't do the sirgery because apparently it is "too risky" (I know from other friends who've been treated at MGH that they are very concerned about their statistics for successful surgeries without complications).

So she referred me to a surgeon at Dana Farber. It turns out this ENT/surgeon is the one who checked me out briefly when I went for mysecond opinion before radiation over a year ago. But I didn't go there for my radiation treatment. I had it done here Cayuga Medical (our local hospital) has a radiaiton medicine unit that's run by Roswell Park--so technically I was treated at a CCC right here. But I didn't really have the support of a head and neck cancer team at a CCC (although I am generally happy with the ENT and medical oncologist who treated me here), and no one even warned me about dysphagia or strictures!

Anyway, I still don't know all that much but it does seem to me your husband is probably still healing quite a bit--he isn't even three months out from radiation so maybe things will get better on their own.

Nelie