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STENTS - find the right surgeo was posted 08/28/2005 03:23 pm by Ariane
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Because this is so rare, it is essential that you have a gastrointestinal surgeon who is experienced with this type of cancer to do the stents. THe first surgeon who tried on my mother was only able to open one duct, and said 'this was the most diffult one he had done' - we were very aggressive about getting her to be seen by a different team (this required some insurance gymnastics) and she now has a GI surgeon who is very experienced in this disease and the stent procedures - however, she still needed to get the stents replaced every two to three weeks the first few times (there have still been some problems with slippage and we had to go in on an emergency basis once). Basically, they keep opening up the ducts further by putting slightly larger stents in each time. THe last time they put in metal stents, which are permanent, but can be cleaned out. Hopefully these will last much longer. The stents really improved the symptoms and made my mom feel much better) - and there is no way that our original surgeon could have done these procedures successfully.

My advice is to be very aggressive about getting an experienced GI surgeon quickly, as you want to minimize the liver failure associated with jaundice and other symptoms. Even very experienced GI oncologists do not know much about the stents - so it is important to have both sides of this equation looked at by different specialists.

Good luck and hope you have some better days ahead.

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