Mom’s story – from disagnosis to surgery

Hi there,
I have been “lurking” around this site for a few months now, being kind of too wrapped up in finding information out for my mom to post any of my own. Thanks to this community for being a fantastic resource for people with CC.

My mom, Chrissy, is a 53 y/o overall healthy woman. She has always seemed to rarely get sick but when she does, she gets very, very sick! I will start at the beginning. We are from NE Pennsylvania.
In the spring of 2012, my mom was hospitalized at the local medical center with jaundice, fever, and in general very sick. They discovered a blockage in the bile duct and she was transported to UPenn in Philly for further treatment. UPenn performed an ERCP in which they were unable to access the blockage site and at that time they told us they felt it was Cholangiocarcinoma. Like so many, we had never heard of that before and were shocked when we read the statistics about this disease. A week and another procedure later they were able to access the blockage and it turned out to be a stone. They did brushings and everything was normal… no cancer. We were so incredibly relieved!

2 years later here we are. Mom was doing well and hadn’t had any recurring symptoms until early November when she presented with incredible itching and jaundice. We went through the same process – back down to UPenn, ERCP, brushings… this time the brushings came back positive. Dr Drebin at UPenn said inoperable. Sent her files to Mayo Clinic to see if she was a candidate for their liver transplant protocol and again were told no – the tumor was connect to her duodenum.

So, we went in search of another opinion. We ended up at Sloan Kettering with Dr. Peter J. Allen and are so thankful that we did. Dr. Allen has ALWAYS had a positive attitude, never made us feel like we were in a dire situation as the other drs had and told us from the very first visit he believed he could get it. We ran into quite the problem with her insurance company because she has a PA HMO (they wanted to send us to a local hospital with nearly no experience in treating CC) but Sloan Kettering was her advocate the entire way. They took over all communication with the insurance company which came as an enormous relief. About 3 weeks later on January 14th, 2015 my mom had 65% of her liver resected and a Whipple procedure. Dr. Allen told us he does each of those surgeries independently a couple of times a week but he had not done them together in about 5 years. Still he was confident, reassuring and compassionate and we felt good moving forward.

Dr. Allen feels that they got all of the tumor and everything they needed to. 18 lymph nodes were removed and 5 were shown to have cancer in them. She will now go ahead with chemo and kill off anything microscopic that could be “floating around”. She sees the oncologist at Sloan Kettering this Friday to get moving on everything. She is doing pretty well recovering from the surgery, some ups and downs, some “bugs” from opening up the small intestine but doing well.

We pray that the surgery has been successful and the cancer will not return! I will keep updated with how things go at the oncologist.

Lots of love, prayers and positive energy to all CC fighters and their families x