Topic: Newly Diagnosed, new member ????
Thank you for all the information on this website. My mother in law was recently diagnosed with bile duct cancer and psc (at the same time). This website has been most helpful as all of us try to learn about this diagnosis.
Joanie started having symptoms in mid-January 2013 while vacationing in Florida. The initial symptoms were itching, dark colored urine and acid reflux. In Feb, on a Wednesday, the itching was so intense, she went to a clinic for the first time. At this point, the nurse practitioner recognized she was jaundice. The next day labs and ultrasound was performed. That evening the nurse practitioner called and reported the test results for the liver functions were approximately 5x higher than normal. Her Alkaline Phosphatase was 856 and her Bilirubin was 5.5 She said Joanie needed to see a GI specialist immediately. On Friday, she had a CT scan and an appointment with the GI specialist. The CT Scan significant finding was: common bile duct wall thickening or enhancement concerning for inflammation of the common bile duct.
Tuesday, Joanie had ERCP and plastic stent placed at OakHill Hospital. The ERCP showed a tight distal CBD and diffusely beaded irregular appearing proximal CBD, intraheptatic biliary ducts. At this point, strictures are noted and beading in the ducts. The diagnosis from the pathology was focal moderate chronic portal inflammation and focal portal fibrosis and mild pericellular fibrosis. The pathology showed no malignancy in the liver from the brushing.
On March 7 and 8, she had a MRI and ERCP spyglass at Mofitt Hospital. One week later, her doctor called informing her she had 2-3 cm malignant mass. The mass was in the mid CBD extending to superior margin of the pancreas, but the pancreas was normal. Findings: Extensive common hepatic ductal thickening present to the bifurcation and thickening of the distal gallbladder and cystic duct. Irregular beading of the intrahepatic ducts and left hepatic duct suggesting sclerosing cholangitis. There was a stricture fo teh left hepatic duct at the bifurcation. There was a periportal lymph node high in the porta hepatis measuring 1.5 x 1.1 cm.
Joanie lives up north and was vacationing in Florida, so she was referred to Mayo Clinic in Rochester MN. March 26 was her first trip to Mayo Clinic. On the second day of office visits, she met with a surgeon. He said she would need a whipple operation along with a liver transplant. The whipple was needed because the mass was so close to the pancreatic head. The transplant was needed because the right lobe of the liver was so affected. The right lobe was "dark" there were no ducts showing going to the right lobe. He advised that that she would not be able to withstand both procedures. He did not feel she was a good liver transplant. He advised consulting with ONC.
The ONC recommended putting two different chemos together. This is supposed to be a mild chemo with minimal side effects. Joanie may also be part of study by Bayer taking place at Mayo. This entails taking the two chemos plus a third drug.
Mayo transplant team looked at her case again, and there is a slight chance she could be a candidate for a liver transplant, but they need to do more tests to make sure the cancer has not spread to lymph nodes.
So... here we are... all the immediate family is gathered down south... yes from Florida to Minnesota back to the ocean. Its on Joanie's bucket list for all of her family to gather at the beach. We all hopped in our cars, and drove down to spend this week with her.
Now we have some decisions to make and would love some advice/insight from those of you who have been through this before.
What are your experiences with chemo? Is it mild like they say? What can we expect from the chemo? How about the whipple and liver transplant--- has anyone had both done successfully? Also, her insurance wants her to go to the University of Iowa-- has anyone been treated there? How about the stents-- right now she has plastic, but will need another one placed soon-- metal or plastic?
Joanie is feeling ok. She gets a little tired, itches a bit, eyes are slightly yellow, urine color gets dark and then normal, lost a little weight. No pain.
Thank you for taking the time to read her story and help us with our questions.