I am very curious to gather more information on this topic from those who actually have achalasia. I have read in numerous areas that our risk for esophogeal cancer is up to 10 times greater than someone without the condition and that we should be scoped on a regular basis. (My grandfather actually passed from e-cancer; however it’s unknown if he ever had achalasia.) But then I recently read that this is unsubstantiated. Please let me know any information or experience you have on this topic. Do you get scoped regularly? Is this something that should be of genuine concern to all with Achalasia? I have not been scoped since my diagnosis in 2002.
In The Netherlands I have been told we achalasians indeed have about 10% more chance of getting E. cancer. Nevertheless, chances we will get it remain small.
But, I visited a German achalasia meeting a couple of weeks ago, where Dr. Schulz has held a presentation. He stated that we have an increased chance on E. cancer of 10% and he stated an achalasian should get a gastroscopy (is that the right word in English as well?) every 2 years.
In Holland I was scoped every 3 years as to check for E. cancer. As of now I am having my check ups every 2 years.
If you read my story- you will see that things changed ALOT from the time I was diagnosed until now - so not sure if what I tell you is going to even hold true to today’s studies.
I was told in about 1988 (I was diagnosed in 1980) that I had an 80% change of developing E cancer. (I have had at least eighteen dialations in my life)
After my esophagectomy, I was told that I of course had no chance now due to no esophagus. However, I read somewhere recently that when you have the gastric pull thru as I did, that there is now an increased risk of stomach cancer. They did tell me in 1998 that I needed a biopsy every 3 years.
My previous GI told me that per statistic people with A. have a slightly higher risk of E. cancer, however he things that this is due to the fact that there is a higher detection rate. People with A. obviously undergo more tests concerning the E., so any cancer will be found. He recommends to get scoped regularly every 2 to 3 years.
My current GI agrees. He says he likes to check every couple of years not only for cancer but also for any infalamation, how the scar tissue is doing and how the e. is emptying. At my last scope he saw some inflamation and adjusted my antacid.
I think it is a good idea to get scoped once in a while. But pay attention to yourself, your symptoms. If something does not feel right, get it checked out. If everything is great, I would not stress about it.
Hey Jenny - well, and everyone else.
I am a firm believer in being pro-active instead of re-active. A is chronic and progressive. My personal thought is that you should have routine follow up - barium swallow and scope - every few years. I was told right from the start to have these done every 3-5 years. Now, because I’m fast approaching 40 and I’ve had A for over 25 years now, I go about every other year. Fortunately, I have had minimal difficulties and not a serious amount of distention in my E but because I go every other year, I’ll be aware of any progression and either have more than one option for treatment (e-gectomy) or have time to make decisions. We’ve seen more than one person on the Yahoo site who didn’t have the luxury of options or time because by the time they went to the doctor, their E was stretched beyone repair. Unfortunately, this is because doctors - especially many years ago - did NOT stress routine follow up.
You can have the most successful myotomy out there but it doesn’t mean that it’s guaranteed to last forever!!
Now the increase in Cancer is debateable, I’ve heard both sides and it could go either way. With regular scopes, you at least get biopsies and can know that it’s there early on and get the best chance of beating it.
Hope that helps.
-Michelle in NC
Thanks so much for responding – good luck to you!!
After visiting the gastroenterologist last week and going over the tests, the narrowing of the esophagus, absent-peristaltsis etc,etc, he told me its your decision, he said i had pre-stage achalasia, if you can swallow without constant regurgitation , constant cough, weight-loss, put up with it as long as you can, so i,m gonna hang out till the years roll by hopefully it will stay the same.I eat 3 meals a day with 4 hours breaks in between each meal with a protein drink mixed with water, i walk 4 miles 3 times a week i feel it helps to speed up the digestion to avoid gas which i constantly get-Vinnie
An important thing to consider in your decision to wait on treatment is whether or not your esophagus is dilating. Since, with Achalasia, the LES doesn’t work properly and the lower esophagus (E) narrows, food can build up in your E (sometimes without you realizing it) and cause it to widen over time. This can cause it to become weak and/or press on other organs in your chest, if it gets severe enough. If you are not having treatment, make sure that you get monitored regularly to make sure permanent damage isn’t occuring to your E. Usually, a barium swallow is the best test for this. There has been at least one person in the Yahoo Achalasia group that had no treatment for several years, seemed to be managing O.K., but had permanent damage to their E occuring. They recently had an esophagectomy. Also, make sure you’re being seen by a gastro. who has seen a lot of cases of Achalasia. It’s pretty rare, so you may have to seek someone out from a university hospital or larger facility (Cleveland Clinic in Ohio is an excellent one). Good luck in managing your symptoms, but please also remember to get checked for damage going with your E.