Tumor in the Duodenum Obstructing the Common Bile Duct

This is the first forum I've ever joined and I really don't know how this works but here goes. I'm a healthy 54 year old female with my first serious health issue. In the process of doing research I've gotten some good information from others here. So, I'm here looking for guidance from you on what I should do next.  I apologize upfront for the lengthy post.

In late July, I started experiencing abdominal pain on my right side below my ribs. The pain started as a dull ache and it radiated to my back. In early August I started having a burning sensation when I peed. The pain in my abdomen progressed to a stabbing pain and continued to go straight through me into my back. I started feeling sick to my stomach and just exhausted all the time.  Finally, after dealing with this for about 6 weeks I went to an afer hours care facility. I've been blessed with good health to the point that I don't even have a real primary care Dr. Anyway, I was diagnosed with a UTI (Flagyl and Levaquinn for 10 days). They did blood work and scheduled me for an abdominal ultra sound. All blood work, including liver panel, h-pylori, CBC and ultra sound came back normal. At that time they thought and I was sure it was my gall bladder. So after those tests they sent me to a GI Dr. and I've had the following tests:  

1) Abdominal CT scan - results normal.
2) Colonoscopy - Diverticulosis and Ischemic colon found. Started on Levbid and Librax. Minimal pain relief.  A week later, I started taking some new antibiotic called Xaifaxin for my intestines...whatever. Still having pain at that point but it would range from a dull ache to a stabbing or burning pain that would almost take my breath away, nausea and fatigue.  
3) HIDA scan - results normal.
4) EGD -  Found an enlarged and ulcerated ampulla with abnormal papilla in the doudenum. Finally, prescribed pain meds.
5) Blood work, including CA19-9 level and an MRCP - results normal.
6) EUS - I just had this done 2 days ago. Finally, some answers. There is a tumor on my ampulla. The Dr. who performed the EUS said it's benign. He did 4 biopsies on it. The tumor is 1.2 cm. It's partially obstructing the common bile duct and the pancreatic duct.

He says I have options. They are:
1) Recheck in 3 to 6 months. My concern is that I will still have the pain and the tumor  will still be there in 3 to 6 months. I don't think that is a good option but I don't know. There is colon cancer in my family. My Grandmother died from colon cancer. Every member of my family have had polyps removed from their colon. None have been cancer.  
2) A surgery called the Whipple procedure. OMG...not even going there unless this will kill me otherwise.
3) ERCP and perform a resection.

I have a follow up appointment with the GI Dr. tomorrow.  I just feel so stupid about all this. I don't even know what questions to ask and I just don't know what to do.

I hope someone here has some suggestions or advice that can help me understand what I should do next.

[Caryopteris]

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.  

[CalGal]

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.

[cj26225]

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.

[cj26225]

Thanks for the response!  I'm trying to remain positive! This has definitely been a wake up call for me.