Diagnosis & Major Milestones

Some parts of this web log provide basic information about Sandy's diagnosis, treatment, and her progress. It will not engage in speculation in any way. Hopefully, this will provide enough detail to help you better understand her condition and to keep you informed through her fight.

Sandy was first diagnosed with Primary Sclerosing Cholangitis (PSC), a progressive disease of the biliary tree that causes stricturing and eventually harms the liver. The PSC diagnosis was in September 2005, followed by the diagnosis of a cancerous condition called cholangiocarcinoma (CCA) in June 2006. PSC is rare, and CCA is even less common than PSC. It is thought by some that this type of cancer may be caused by PSC, though no one really knows for sure.

Major Milestones:

August/July 2005
Initial onset of symptoms: pruritis, jaundice, and fatigue.

September 2005
PSC is diagnosed.

October / November 2005
Excellent response to temporary stent. Stent removed in October, Sandy resumes normal activities later in Fall and energy improves.

March / April 2006
Symptoms return and escalate, images indicate possible mass in/on/around biliary tree.

April / May / June 2006
Multiple procedures intended to relieve symptoms of PSC, qualify and diagnose the possible mass. Despite multiple negatives, results of these procedures are inconclusive.

June 2006
Surgical exploration confirms presence of cholangiocarcinoma (CCA) cells on common bile duct and in some nearby lymph nodes.

June / July 2006
Treatment options explored, case reviewed with alternate institutions.

August / September 2006
Sandy undergoes chemoradiation therapy daily for 6 weeks, based on Mayo clinic protocol.

September / October / November
Recurrent symptoms from obstructions require repeat ERCP's to place stents. Procedure repeated two more times over next 4-5 weeks to try different stent types and placements. Sandy is getting proficient at recovering from these procedures. That is no small accomplishment.

October / November 2006
Hopkins wants to "wait and see." Univ. of Pittsburgh Medical Center (UPMC) accepts Sandy as candidate for live donor transplant. No harm in pursuing the preferred option of transplantation with one while the other "waits and sees," right?

November 20, 2006
Sandy's evaluations at UPMC scheduled to begin.


There are two postings in this web log that provide details about PSC and cholangiocarcinoma (CCA), including some images to illustrate the biliary structure. Look in the index on the first page of the blog to find both discussions.