My father was diagnosed on October 29th with Cholangiocarcinoma

My dad is 67. We live on the East Coast near Philadelphia close to hospitals like Fox Chase, University of Pennsylvania, Jefferson, Temple, Cooper, and Johns Hopkins. We are about 2 hours away from New York and Johns Hopkins.

I am the youngest of my dad’s 3 sons. I am 39 and have 3 children who are 5, 3, and 1. My kids adore my father and looked forward to his visits which were usually 1 day a week and once over the weekend. My kids really miss my mom and dad coming over. I take them over to see them 2 or 3 times out of every 7 days. I can tell seeing my kids boosts my mom and dad’s spirits.

My mom noticed my dad’s skin and eyes turned jaundice around September 10. They went to their family doctor and an ultrasound was ordered. The ultrasound revealed a blockage in the bile duct. An ERCP was performed at Cooper Hospital in NJ. My dad had a severe reaction to the ERCP procedure and got pancreatitis and had to stay in the hospital for 8 days eating nothing but ice chips most of the time. He dropped 20 to 25 pounds in about 3 weeks. The ERCP revealed my dad had a stone and 2.5cm mass. The stone was removed during the ERCP. A biopsy was taken of the mass which came back as non-definitive for cancer but atypical cells noted. So my dad had a surgical consult and it was determined that surgery was an option. My dad’s tumor/mass was at the confluence where the right and left hepatic ducts meet.

Surgery was performed on October 14. The surgery lasted 7.5 hours. They removed part of his liver and the surrounding tumor. The final diagnosis was the bile duct and surrounding tumor revealed the following:
1. infiltrating moderately to focally poorly differentiated adenocarcinoma
2. Tumor (2.5 x 2.2 x 1 cm) infiltrates bile duct wall and involves periductal soft tissue with focal perineural invasion identified
3. Tumor infiltrates surface of the liver
4. Tumor is present at inked periductal margin and at proximal bile duct margin
5. No angiolymphatic invasion identified

The gross description indicated the following – Sections disclose lesional tissue coming very close to one of the proximal resection margins. The tumor is yellowish-tan and very friable and comes to multiple resection margins grossly.

He was noted as T3, NX, MX

The oncologist and radiologist both commented that they have never seen someone look as good as my dad after going through the this type of surgery. The surgeon said he was able to completely remove the tumor and infiltrated soft tissue. He said he had healthy tissue (to the naked eye) on both sides to reconnect/rebuild. The oncologist said they are administering chemo and radiation to eradicate/clean up any microscopic cancer cells left behind.

My dad is getting a port put in his chest on December 4th for the chemo applications. He is set to have 6 weeks of chemo starting December 7th. He is going to get 5 FU continuous flow (24 hours a day for 6 weeks). He will have his chemo bag changed once a week. He has to get radiation 5 days a week the entire time he is getting chemo. He will have 1 to 2 weeks off after completing the 6 week regimen and then start a 4 month chemo regimen where they will give him 4 cycles of chemo to take place as follows. He will get chemo (Gemzar) 1 day a week for 1 hour for a total of 3 weeks in a month. He will have the 4th week off and then start over with Gemzar for 1 day a week for 3 weeks and 1 week off.

This has really changed our lives. I am so scared for my father and for my mother. I am also not ready to lose my dad. This came out of nowhere as my dad was perfectly healthy before this mess. We lost my father-in-law 7 years ago to squamous cell carcinoma that started on his penis. My father-in-law had horrible quality of life for the last 4 months of his life. I am scared…my father’s condition is the first thing I think about when I wake up and the last thing I think about before I go to bed. I am having a difficult time coping.

I know how serious this cancer is and the prognosis is typically not good. I’ve spent countless hours researching this type of cancer and I am well aware of the statistics. I looked at almost every picture and read everyone’s case on the pictures of cholangiocarcinoma and noted that most folks live only months.

I would greatly appreciate any advice/help/feedback etc… My heart goes out to anyone who has to deal with this cancer or any cancer for that matter.

Has anyone gone through the chemo and radation I describe above? Any advice?