I know your post is from last year but I wanted to know how you resolved this issue. My husband is being told he needs a submucosal duodenal resection for a benign growth that has gone deep. There are not many doctors that do this. Did you have surgery? What method? Did you have to look far to find a surgeon who would do it? The duodenum is pretty much the hardest place in the digestive system to operate on. Hope you found help and a resolution.
Thanks for the response! I'm trying to remain positive! This has definitely been a wake up call for me.
Thanks for your response!
I see my GI Doc this afternoon and he wasn't the one who did the EUS. That EUS Doc told me there isn't anyone in our area who can remove this tumor. So, I have a feeling my GI Doc will probably refer me to someone else. If he refers me to someone local, is that who I will have to see?
I've only just started researching Docs and hospitals and so that's overwhelming. I've looked at Johns Hopkins, the Mayo Clinic (Rochester, Mn) and USC (after going to the link you attached...Thanks!). How do you know what to do or where to go? Any more thoughts or suggestions here would be appreciated.
Cj, first and most important, you want to be dealing with a doc or team that specializes in this area of the body. If your GI or surgeon is NOT highly skilled in the biliary system, find someone who is for a follow-up. This is NOT an area of the body you want to 'mess' with without one heck of a lot of experience.
Try this link - overlook the reference to cancer - but read though to get an idea of what can be done: http://www.surgery.usc.edu/divisions/tumor/pancreasdiseases/web%20pages/BILIARY%20SYSTEM/AMPULLARY%20CANCER.html
CAN they remove that tumor entirely and allow for free-flow? If that tumor can not be removed entirely and allow free-flow from the common bile duct to the duodenum, there will be problems down the line.
The doc may not have said it in these terms, but some of what he/she may be saying is 'we can't guarantee any surgery will work, so how many times are you willing to have surgery.' Sorry to be so blunt, but there can be full success or problems with any surgery. So one of the first steps - if the tumor can't be removed from the ampulla entirely - to consider would be moving the opening of the common bile duct further down the duodenum. It has to be moved further down because you don't want a backup of bile into the stomach.
Sometimes moving the opening works; sometimes it doesn't. There are many factors that feed into it & the skill of the surgery is a biggie, but so is can your body handle that? Will you form scar tissues, how long is your common bile duct, what is the 'configuration' of that duct and your other 'insides,' etc., etc., etc.
If that works, great! But if it doesn't, then you might have to consider a Whipple procedure, because you can't typically move the duct more than once (to my knowledge).
The Whipple procedure can be a very scary thing to face. And if a Whipple is considered at all, what form of Whipple is the doc talking about? You want to preserve the pylorus - the outlet from the stomach - if at all possible.
So you have a lot of questions to ask and you have time to learn and understand. So don't rush into anything.
So is ERCP and resection the option between the other two options? That's what it sounds like. I'd find out more about this option from the surgeon, and be sure to ask which option he would do for a family member, and why. Try to stay pleasant so he will spend as much time as possible with you, explaining it.