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My husband's swallowing failed completely within just weeks of starting radiation/chemo for base of tongue cancer. After 11 mos. of 100% dependence on his PEG tube, it was finally discovered that the problem was not just weak irradiated swallowing muscles... Rather he actually had a stricture of the upper esophagus (almost 100% closed) due to the area being in the "line of fire" (high dose radiation range). The stricture would never had been discovered without a referral to Speech Therapy (they do swallowing therapy too) and a Modified Barium Swallow study (a special xray to assess the swallow process). (Some oncologists do not recognize the importance of a Speech Therapist or the xray swallow studies with H&N cancer patients, therefore will hesitate to refer sometimes.) However, if you are "dysphagic" and your swallowing ability has not returned (after healing from radiation, etc.), it may be because you have an esophageal stricture. My husband's stricture was successfully opened and he is now eating just about everything without risk for aspiration. If you suspect (or have been diagnosed with) a stricture, I'll be happy to tell you where and how my husband was helped. (Not just any gastroenterologist or ENT can open a stricture caused by radiation. It's tricky and risky. There is a procedure available now that is helping people with radiation-induced strictures. My husband has been feeding tube-free for about four months now, and doing very well. It's great to have him back at the dinner table with me and enjoying his meals, FINALLY! Let me know if anybody has questions or comments on this topic
My dad just passed the swallowing test and will be able to eat foods well purees at this point but has to go back for chemo and radiation and I am sure he will have some difficulty swallowing as he did before.. tell me more if you can
Hey there. The fact that your dad passed his swallowing test is the best sign that his esophagus is open, at least to a point. (Pureed foods is a start.) However, it still may be more narrow than is normal (due to radiation scarring). Sometimes they can see on the swallow study xray what appears to be a narrow section of the esophagus and will then make a referral to a gastroenterologist to have it scoped to find out for sure and to what extent. (They didn't say narrowing was noted during your dad's study, did they?) I think in most cases, if there is a narrowing, swallowing can be improved with an esophageal dilitation procedure, which increases the size of the opening. (Unless the problem is complicated by weak swallowing muscles too. Of course, there are swallowing therapies to help that too, like thermal stimulation which my husband had, although I don't know how effective they really are.) My husband had a special type of dilitation known as TREAD because his esophagus was scarred completely shut to the point nothing could pass through, and a regular dilation was not even an option. In your dad's situation (considering he's due for more chemo/rad. soon), it may be that the swallowing issues will be back-burnered for a while anyway. But, once he's through treatment and healed as much as possible, I'd ask his medical team about radiation injury to the esophagus and whether or not there's a possibility of a narrowing or stricture, especially if his swallowing is compromised even moreso this time. I shall keep my fingers crossed that his ability to eat does NOT worsen and that the upcoming rad./chemo does its job! Much strength to you both.
Thank you so much!! I appreciate all your input.. Throat cancer is a crappy thing for all to go thru
Can you please tell me where and how your Husband was help? I have a complete blockage of the esophagus due to strictures. After trying a couple of procidures I am left with the removal of the esophagus and pulling the stomach up. I have declined this option because of the risk. I am 49 so I would like to find a soultion to this probem so I don't have to live via a feeding tube the rest of my life, Thanks for your help.
No, at age 49 (or any age for that matter), we do not want to depend on a feeding tube to live out the rest of our days, (although it's better than the alternative if nothing else can be done). I totally understand the anxiety and desperation you feel about being PEG-fed permanently. (The lifestyle alterations are too numerous to count and it's depressing beyond words... I know so very well.) I also understand your reluctance about the esophageal/stomach surgery that has been proposed. I have heard about this surgery in cases of esophageal cancer where removing a section of the esophagus (and bringing up the stomach) is sometimes the best (only?) option for trying to get rid of the cancer. It was never introduced to my husband as a plan for dealing with his stricture... (although his was described by the physician who ultimately opened it up as "the second worst case I've ever seen").
Of course it may be that your case is different in some way (or perhaps more severe) in that you apparently have multiple (two?) strictures (if I read your post correctly)?? I really don't know. Were yours determined to be caused by radiation? If so, where and what type was your cancer? Have you had any surgeries related to head/neck cancer... (such as a neck dissection, for instance)? Are you in remission now? What other procedures have been attempted to open your esophagus (you mentioned that a couple of things were done already)? Has a regular esophageal dilitation been tried? If so, were they able to get any opening at all?
Scott, please understand... I am not a medical person... (Well, a medical secretary for ten years, but that's about it!) I am more than happy to share information about the procedure that helped my husband, but cannot say that it will help you (or would even be a remote option in your particular case), especially since I know nothing about your medical history.
Because an explanation of a complex medical procedure could be quite lengthy, I would prefer to tell you about it over the telephone. First step... email me at [firstname.lastname@example.org] and I'll give you my phone number that way. In the same email, please answer the questions that I've "peppered" throughout this post, so I'll have a little more information about your particular situation.
I'll go ahead now and give you some basic information...
My husband's radiation-injured esophageal stricture was successfully opened primarily with a procedure known as TREAD (Transgastric Retrograde Esophagoscopy w/h Anterograde Dilitation). The man who "invented" and perfected TREAD did so at the Dana Farber Cancer Institute (Harvard) in Boston, MA. His name is Dr. Christopher Sullivan. He is a gifted physician, an Otolaryngologist, with a special interest in Head and Neck cancer. I have found him to be particularly "approachable" and down-to-earth. He is a man of research and ongoing study. Dr. Sullivan left Dana Farber almost a year ago and is now part of the Comprehensive Rehab staff at Wake Forest University Baptist Medical Center (formerly North Carolina Baptist Hospital) in Wake Forest, North Carolina. Since transferring to Wake Forest, he has now introduced the TREAD procedure there... My husband was the very first patient to receive the procedure at Wake Forest. Wake Forest is a great hospital with a wonderful oncology department, but they were not doing TREAD until Dr. Sullivan arrived.
We live in central Virginia. When my husband's stricture was discovered as the culprit behind his not being able to swallow (at all... not even his own secretions), no physician in our area would even attempt to open it. It was too risky to do a regular dilitation because the stricture was so severe (completely closed), scarred and "gnarly" from radiation, and the tissue was particularly vulnerable as a result. None of our physicians around here had ever heard of TREAD until I found it on the internet (described in a Web article published in a medical journal called "Laryngascope", Nov. 2004 issue). I researched it, located and contacted Dr. Sullivan to discuss my husband's case and the probabilities that TREAD might help him, and ultimately introduced the idea to our local doctors who were acutely interested, asked me lots of questions, then told me to "proceed". All they did was write out our referral when I said the word and we were on our way. In light of my husband's successful outcome, our local medical team has since referred at least one or two other oncology patients who suffered the same radiation-induced stricture. I do not yet know the outcome of either, although one patient was told to contact me for information about the procedure (from the patient's perspective) and I was able to tell them what to expect and how my husband fared throughout and after. This lady also was losing hope and told by all local doctors that nothing further could be done. Her stricture was also classified as "severe". Like you (and my husband), she feared being on the tube for life as well, and was estastic to learn about the new procedure, TREAD.
Scott, do email me and we'll arrange talking on the phone first. If you like, you can also go ahead and contact Dr. Sullivan directly by calling 1-(336)-716-4161. When you get the auto-menu, push whatever number they list to get the doctor's secretaries menu. Then enter 20, Dr. Sullivan's secretary's extension. (Her name is Kay Collare, very helpful and nice.) Tell Kay that you talked a lady in Virginia whose husband had the TREAD procedure by Dr. Sullivan last year, and that you want more information about it. Request a call-back from Dr. Sullivan personally. He is always happy to return my calls directly, and I think he prefers to do so. The first time I ever talked to him, Dr. Sullivan said... "Okay, tell me your story". He listened intently with empathy and understanding. He explained TREAD carefully and answered all my questions. Then, when he voiced the words, "Yes, I think I can help you"... I made it through the rest of the conversation okay, then cried uncontrollably after hanging up. I was so relieved! Dr. Sullivan is the first physician to ever speak with me for a half hour on the phone! (Of course, that was during the time he was just getting established at the new medical center and hadn't started seeing patients yet.)
A close second only to putting his cancer into remission, having my husband able to eat once again is the most wonderful thing that has happened since the dreadful day we learned about his cancer. It has brought back daily life as we know it. Joy has returned to our home... just having our coffee together in the mornings is such a BLESSING!
Where there was once very little hope that my husband would ever be able to even take a sip of water without violently aspirating, he now eats and drinks EVERYTHING. Yes, he suffers from dry mouth which makes eating bread or breaded foods more difficult than before but, with sips of liquid in between bites, he does fine. He has not aspirated a single time since regaining the ability to eat. After eleven months of being completely unable to swallow, it was only a matter of weeks after the TREAD procedure that my husband was ready for the removal of the PEG tube. What a great day that was! It is all thanks to Dr. Sullivan.
Okay, Scott... The plan is... Email me, answer my questions, and we'll talk on the phone soon, I hope. I'll tell you all about the procedure, the risks, my husband's experience, and answer all your questions. I am so in hopes that TREAD will be appropriate in your case too, and that you will also be TUBE-FREE one day! Obviously, with you being in California, traveling all the way across the U.S. would be difficult... but not impossible... especially when your being able to eat is at stake. If Dr. Sullivan does think he can help you... maybe you can come stay with us here in Virginia. (It's about a 3 hour drive from our home.) If I knew all this would result in your eating again... my husband and I would drive you ourselves from our house! I'm not kidding... It's a HUGE gift to have swallowing restored... and I want you to eat again!
From my heart,
MelanieThis message has been edited. Last edited by: Melanie,
I was so excited to see your posting because it is exactly what Doug has been going through! (my boyfriend) He began radiation and chemo last May and in June, he had the peg tube placed as he was also unable to even swallow his own saliva. For a long time, he had a "sucking" machine by the bed to rid himself of it all. In January they tried the first diliation and found a stricture which required a dilitation by two surgeons at one time (it was low down in his esophagus just barely at the radiation point). Afterwards, he passed the barium swallow test but still could only manage soft foods and liquids. At that time his surgeon told me it was the worst scarring from radiation they had ever seen. His throat started to close up again a month later and they dilated again but we aren't sure how succesful it was as he was then hospitalized for detox from morphine. Now they have found another stricture and want to do another dilitation. I am wondering...what is the difference between the procedure your husband had and what Doug has been getting? I would appreciate any help...please! Thanks!
Sounds like Doug's situation is very similar to my Danny's. Darned 'ole radiation can really do a number on the poor esophagus, huh?!! You mentioned the suctioning machine... Danny also had one by the bed. Noisy contraption... but better than using box after box of tissues! He is now able to manage secretions without either. The whole mucus problem is much better now anyway.
So, is Doug able to eat/drink anything at all now... or 100% tube-dependent?
When you describe the dilitation that was performed by two surgeons... it sounded similar to the procedure Danny had. TREAD sometimes requires two teams... one working from the top of the esophagus down... and the other from the bottom of the esophagus up, via the PEG stoma. The two teams work until they see light and have achieved a sufficient opening again. (Does that sound like what Doug had done... Did they go up through the PEG stoma and into the esophagus that way?) Other times, they just go the upwards direction only, with the stoma as the entry access, and don't work down from the mouth at all. I think the "trick" is to carefully work primarily from the uninjured portion of the esphagus up into the irradiated restricted area, instead of the other way around. That way it's less chance of causing a perforation... or tearing-puncturing the esophagus. Unfortunately, in Dan's case, they did perforate slightly... just a series of tiny holes. It couldn't be helped. (Like Doug's, Danny's esophagus was just so scarred up.) It was a small setback that kept Dan in the hospital for a week on antibiotics... but the perforation healed up quickly enough. Then Dan went back for another dilitation to complete what they had started (before the perforation). That time, an opening was achieved that was near normal. Thus, he started eating a regular diet soon after (once the soreness had subsided from having the dilitations), followed by removal of the PEG.
One thing that Dan received at the same time they did the TREAD procedure was steroid shots directly into the scar tissue. The purpose was to help keep the esophagus open. (Apparently the steroids help prevent the scar tissue from restricting-growing again, thus preventing or delaying another stricture from occurring.) So far, Dan has not noticed any change in his swallowing, which means the esphagus remains open and the scar tissue is behaving. It has been eight months since his TREAD procedure. We were told that future dilitations may be needed from time to time because the scarred esophagus will always have a tendency to start closing back again. Well, so far... so good for Dan. His swallowing continues to be near normal and he eats everything... including meats of all kinds.
Were steroid injections done in Doug's case? Given that his esophagus began to close just a month after diliation, I doubt it.
I had included the doctor's name/number (who does TREAD) in a previous post (a note addressed to "Scott"). Why don't you call Dr. Sullivan and tell him about Doug's situation and ask about TREAD? (Tell him that Melanie from Virginia told you about her husband, Danny's success.) Don't hesitate to call. He's very personable and glad to answer questions.
Let me know what Dr. Sullivan tells you. I'll be praying that Doug can be helped the way my Dan was... and you two will be going out to a celebratory dinner soon and eating whatever you like!
From my heart,
Thank you so much for all of the information! I did call your doctor's office and they were very sweet and said they would email me out some information and that someone would also call me next week. In the meantime, I spoke with one of Doug's surgeons and he had not heard of the procedure but based on the title of it, had accurately guessed what it is they do. He said because they are able to go down Doug's throat they wouldn't need to go retrograde but based on your posting last night, I think the culprit is the fact that he is not getting the steroid shots you mentioned. It seems to me someone, one of his doctors, mentioned it once but nothing came of it. I will certainly look into that ASAP as Doug goes in for another "stretch' tomorrow! You have been so helpful and I want to thank you for everything including your kind thoughts! Doug's birthday is coming up and I know all he really wants is to be able to go to our favorite restaurant and eat again! I will keep in touch with you and let you know how things work out! thanks again and congrats to Dan!
Dan and I made the 3-hour trek to N.C. just yesterday for just a routine follow-up visit. No sooner had we walked in, Dr. Sullivan's secretary said "Hey Mel... We received calls from two different people that you had referred for information about TREAD". So, I knew you and Scott both had called. I'm very glad you did. Dr. Sullivan mentioned it too when we got back into the exam room.
One other thing that I remember Dan had done during the TREAD procedure (that I wonder if Doug had too) is the placement of a temporary esophageal stint. Once Dr. Sullivan sufficiently opened Dan's esophagus, he placed a plastic tubular stint (via one nostril) down into the just-opened section of the esophagus. There was a length of the stint which extended out of the nose that Dan kept tucked away into the back of his shirt collar such that it was out of his face and secured. Dan had to have the stint in place for three weeks before it was removed (and he could begin eating again). I completely forgot to mention the stint to either you or Scott... and it's very important. The purpose for the stint was to hold back in place the just-manipulated/pushed-aside scar tissue... forcing the opened stricture to STAY open with something rigid... which, after three weeks, more or less "trained" the scarred tissue to stay back in that position, thus allowing the opening to become more permanent-stable for (hopefully) a decent period of time. (As I mentioned, eight months so far, in Dan's case.)
So... The question... Did Doug's doctors place a stint once they did his dilitation? If not, that could well be another reason it closed back so quickly. In fact, Dr. Sullivan told us just yesterday that he received a call recently from some other physician (in another state) who wanted Sullivan's opinion as to why the dilitation he had recently performed on a patient quickly failed. Dr. Sullivan asked a few questions and determined that the reason his dilitation didn't "take" was because the inexperienced doctor had not placed the post-TREAD stint. Soooo, obviously it is important and can be the difference between success and failure after the procedure.
Definitely ask about the stint, Belle, if Doug didn't have it after previous attempt(s). I suspect it was either not getting steroid injections... or not having the stint placed... that caused Doug's esophagus to close again so quickly.
I will maintain hope, prayers and positive thoughts for you and your Doug. (Especially that he will get his birthday wish of having a nice meal with you at his favorite restaurant!) Yes, please do keep me posted... I am pulling for you both!!!!
From my heart,
P.S. Will you please forward the information that Dr. Sullivan's office sends you about TREAD. I don't have anything in writing about the procedure and would like to have it when people ask questions about our experience. My email is [email@example.com]. THANKS!
Just an editorial note:
Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice.
"If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally."
Lao-Tsu, Tao Teh King
Thanks for the reply. As yet,I have not received the info from Dr. Sullivan's so I will probably call them on Monday. I will send you anything I get from them.
I am feeling very discouraged today as Doug had another dilitation yesterday and his surgeon said he will start steroids shots next time but that he didn't want to put a stent in because of the location of the stricture, Doug will feel it all the time and it would be very uncomfortable. Like he isn't uncomfortable now?! I may actually have to go back East to get Doug the help he needs as they are so...I don't know....overly cautious here? I don't know which I feel more right now...disappointed, angry, or tired? I have to go to work now but I will be back!
Just curious... When you called Wake Forest, did you actually speak with Dr. Sullivan himself (or his secretary only)? If not, I wish you could talk with him personally. When you try again on Monday, do ask for a phone consult with Dr. Sullivan himself... even if he has to schedule a few minutes to call you back on a more convenient day, or whatever.
When Danny and I were there this past Thursday, Kay (secretary) said she was waiting for Dr. Sullivan to get together the information to be forwarded on to you (and Scott).
About the stent...
I appreciate Dr. J's post about how stents are used in general and hope it gives you a good idea as to their purpose in esophageal dilitation.
Yes, the stint was a bit uncomfortable... but not actually "painful". Mostly it was just annoying. But, it was temporary (3 weeks) and apparently quite necessary to the success of the procedure. He got used to the feeling of having the tube after just a matter of days. The inconvenience of having the stent was certainly worth it when the end result was eating and removal of the PEG. Dan actually went right back to work shortly (just days) after having the stent placed and didn't miss a beat. He knew it looked a little strange to have plastic tubing extending out of his nostril, but didn't care. His co-workers didn't either... they were all so in hopes that the procedure was going to prove successful and he would eat again.
About the steroids...
When you write: "... he will start steroid shots next time..." -- I was a bit confused. That sounds like there will be a series of shots perhaps??? Danny only had it done one time... and that was when Dr. Sullivan was already "in there" (working in the esophagus during the TREAD procedure). If I understood correctly, Dr. Sullivan did the steroid injection(s) directly into the worst of the scar tissue located along the length of Dan's just-opened stricture.
When Doug's doc described the steroid injections to you, did it sound like something he might do the next time a dilitation is done... or what exactly? Also, what did the doc mean by "starting" steroids? (Again, that sounds as though he intends to make it a "series" or something ongoing, which confuses me.)
So, was Doug's dilitation successful this time? Was a sufficient-enough opening achieved? Can he start any level of an oral diet at this point (or once the soreness of the procedure subsides)?
How far down is Doug's stricture? Danny's was at the very top... "postcricoid"... the first 3 cms. in fact.
I am so sorry you are upset and disappointed. That's why I'm asking about the success of the dilitation. I assume by the description of your emotions that it was a failure???
If Dr. Sullivan tells you that he can likely help Doug, is it logistically possible for you to travel across the U.S. for the TREAD?
Belle, I've peppered so many questions into this email, it'll take you forever to respond. If you want to talk to me by phone, send me an email to my personal account [firstname.lastname@example.org] and I'll give you my telephone number.
Chin up, dear one! There is still hope.
Just an quick update, Kaye sent me a 6 page report on the precedure if anybody wants it just let me know I will be happy to send you a copy, I have had this procedure before, It was not successful for me. I was the first patient they tried this on so I am sure they were very cautious for fear of puncturing my esophagus, They had a full surgery staff there to remove my esophagus had the punture it. So Melenie I was glad to here that did not remove your husbands when that happened to him.
Since Dr Sullivan has been successful with severe cases like mine I contacted my Dr. and asked him to have a consult with him, I will let you know what happens with that. Melenie thanks again for the phone conversation
Bye for now
Nice to hear from you again. Belle received her report too, and forwarded a copy my way. I must say it was somewhat difficult as a layperson to follow, but suppose it was the only written material they have available.
I think it's odd but, when Dr. Sullivan went over the risks of TREAD, he never once mentioned to us that emergency removal of the esophagus could occur as a result of perforation (puncture). Rather, he made certain we knew that a perf would not be a good thing... but... if it happened, Dan would be given mass dosages of antibiotics and watched for high fever (which might indicate an infection in the chest cavity from germs escaping from the esophagus). So -- We were told that the greatest danger would be the occurrence of a nasty infection which could, potentially (worst case scenario), result in death. Perhaps it depends upon how severe the perforation is. Dan's was just a short series of small puncture holes. After the procedure, they sent him to an area of the hospital that was one step up from ICU where he spent the first couple of days under close nursing survellience... then, after the threat of fever/infection passed, transferred to a regular room to finish out the week of antibiotics. When discharged home, he took another series of prescription antibiotics. Then it wasn't long afterwards that he returned to Dr. Sullivan's office for a scoping. The perf was determined to be nicely healed and the second (and final) diliation was scheduled (this time, just a regular one needed... not another TREAD). The rest is history of course... Dan eats a regular diet
During our initial consultation with him, Dr. Sullivan did tell us about a couple of his previous cases who were perforated during the TREAD procedure... but I believe he said that they, too, healed with antibiotics and time.
Just curious... Did Dr. Sullivan also tell you (or confirm) that the esophagus may need to be removed in the case of esophageal puncture during TREAD? If not, ask him about it. Next time we see him, I'll pick his brain too.
I suppose someone has to be the first patient for everything... as you were for TREAD in your area. Thus far, Dr. Sullivan's track record is long and speaks for itself. I am so glad to know that you plan to have your physician consult with Dr. Sullivan. That's a good first step.
I enjoyed talking with you on the phone, and wish you the very best. Keep me posted. I will keep my fingers crossed that Dr. Sullivan can help you too.