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Neuroendocrine Carcinoma in the Common Bile Duct

dextrocardia's picture
dextrocardia
Posts: 3
Joined: Nov 2009

I was curious if there was anyone out there diagnosed with a Neuroendocrine Carcinoma of the Common Bile Duct. I was diagnosed last year and underwent a Whipple procedure. I've looked all sorts of places and so far I haven't been able to find anyone else that has had this. One thing I heard from every doctor I encountered was that this diagnosis was very rare. It almost made me uneasy to think that none of my doctors have ever dealt with this before and everyone was pretty much taking it one step at a time and not really giving me any answers. I was told that with this type of cancer chemo or radiation isn't effective, so I have only had surgery. I know it sounds ridiculous but because I have not gone through chemo I feel like I almost can't complain because I have not suffered near as much as other cancer patients. I would also like to hear other people's first hand experience after having a Whipple procedure. I have had a lot of complications and two days from now will be exactly one year after my surgery and I am still having some issues.

mr steve
Posts: 286
Joined: Sep 2009

dex,

My wife had a modified whipple in April. You may want to get to a hospital that works with this type of cancer. M D Anderson in texas and OSU in Ohio were 2 of the places that we recomended to us. There are also several trials ongoing treatments for Neuroendocrine. As for chemo my wife is getting Temodar and Xeloda tablets now, but her Neuroendocrine cancer has mets to liver oviaries and lymph nodes.

LisaH76
Posts: 1
Joined: Sep 2010

Hello, I just stumbled across your post while googling. I am a 34 year old woman, and mother of 8 children. In June, I went into the gastroenterologist for what seemed to be gallbladder problems. I was sent for an ultrasound of my gallbladder, and while they *did* find gallstones, they also found a mass on my bile duct. I was referred out to the Mayo Clinic in Scottsdale, AZ, and underwent extensive testing. It turned out to be a carcinoid tumor of my bile duct...very rare, like you said. On August 27th, I underwent an exploratory laparotomy, had my gallbladder removed, a bile duct excision, a partial whipple (roux-en-y hepaticojejunostomy), had 11 lymph nodes taken out, and interoperative ultrasound. My margins around the tumor and all lymph nodes were clean, and nothing else of interest was found, but I'm left was way more questions than answers. I am to be followed by an oncologist at the Mayo Clinic, but I worry that so few doctors even know what a carcinoid is, let alone the specifics of one found in this very odd location. I'm not sure if you will get this message as your post was from almost a year ago, but I hope you do! I also hope you are well! You can email me at luxor@uneedspeed.net

Lisa

Aisdane
Posts: 1
Joined: Mar 2011

Hi
I hope everything is going well for you and I hope you don't mind my replying to your message after such a long gap - but I'm only after coming across it now. I was also diagnosed with NET in the bile duct is September 2009. After some complications I had a successful whipples in May 2010 and I have my First annual check-up this week. I was wondering - how are things going for you.

Gerry

mr steve
Posts: 286
Joined: Sep 2009

Gerry,

My wife just had to start back on chemo after a 9 month stay. (xeloda and temador) Seems the tumors are growing and popping up in even more places. another ct scan next month so well see how thing go.

Steve

prakash wadekar
Posts: 1
Joined: Jun 2011

Hi!!! First of all let me tell you that You please don’t worry , God is great !!!everything will be alright very soon.

Few months back my wife also diagnosed with the Neuroendocrine Carcinoma of bile duct…for which she got surgery (Rt.Extended Hepatectomy)they removed the right lobe of her liver , but before the sugery doctor did one procedure PVE(Portal Vein Embolization) to achieve Hypertrophy of her future remnant liver…after 6 weeks they did a CT Scan and confirmed the desired Hypertrophy and fixed the operation …operation went very well…generally it takes two to three ICU days after the surgery…but my wife was in ICU for seven days because she had a breathing difficulty due to post operative plural effusions , for which doctor put a pipe (Pigtail drain pipe)to drain a fluid which was there near her lungs…she is ok now and got a discharge from hospital , I believe that our doctors gave her the best and right treatment …thanks to God!!!if you need any information about the treatment please feel free to contact me on my e.mail prakashwadekar@gmail.com..
Wish you all the very best for your future , God bless you!!!!

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