My father, Gordon, was diagnosed with CC in the early days of September, 2008 after my mom noticed that his skin and eyes appeared to be turning very yellow, a condition known as jaundice. He had no pain, and no other complaints, which concerned the doctors. Before any tests were run, the local gastroenterologist indicated to us that painless jaundice was very likely an indication of a tumor obstructing his bile duct, most likely near the pancreas. An initial CT scan ruled out a pancreatic tumor, however, the following day an ERCP was performed, at which time a narrowing of the common bile duct was noticed. The same doctor again approached our family with the bad news. His words were, "e; “unfortunately, this is not a very good cancer. It doesn't respond well to chemotherapy. Radiation may shrink the tumor and give you more time. Your best chance might be at the Mayo Clinic where they are doing experimental liver transplants for cholangiocarcinoma. "e; and there it was for the first time...that word...cholangiocarcinoma. It took our breath away.

Within two weeks, dad visited the Mayo Clinic in Rochester, MN for a second opinion and an initial workup and consultation. Our family had a lot of fear and anxiety during this initial visit. All the research we had been doing during the weeks preceding the visit did not paint a very “rosy” picture. Expecting the worst, but hoping for the best, dad underwent a series of tests once again, including chest x-rays, another ERCP, an endoscopic ultrasound, an MRI of his abdomen, and numerous blood tests. The following day, he met with Dr. Lewis Roberts, a hematologist / gastroenterologist and with Dr. Michael Farnell, a surgeon. The news was better than any of us expected; indeed, an answer to many prayers. Dr. Roberts and Dr. Farnell concurred that the tumor had been contained to the distal section of the common bile duct and had not yet spread to any surrounding organs or lymph nodes, making dad a great candidate for resection surgery. Dr. Farnell scheduled the surgery for October 2, 2008, and explained that he would likely have to perform a Whipple surgery to remove the tumor, including part of the duodenum, part of the pancreas, the bile duct, the gall bladder and perhaps part of the liver. He told dad to prepare for a long surgery and recovery which carried a high risk of complications.

Surgery was performed as scheduled, with dad entering the OR at 8:45 in the morning. Periodic updates by the surgical nurses throughout the day indicated that the surgery was proceeding well, and at about 6:45 that evening, dad was returned to his family who were waiting for him in his hospital room. Dr. Farnell met with us prior to dad's return and gave us wonderful news! The surgery, while extensive, did not have to be the complete Whipple! Instead, the doctor was able to determine that the 2.7 cm tumor was well contained to the distal (central) section of the common bile duct, hadn't spread to any of the other organs or any of the 9 lymph nodes which had been tested, and displayed negative margins. Because of this, Dr. Farnell chose to only remove dad's common bile duct and gall bladder, then “built” him a new bile duct out of his small intestine. This was good news indeed, as it substantially improved his post-operative recovery time and prognosis. Dr. Farnell (highly regarded for his surgical skills and known to be one of the most experienced Whipple surgeon's in the United States) went so far as to tell us that he did not remember the last time he saw a tumor located in such a good way, and that if anyone stood a good chance of surviving this cancer, dad did! Within 15 hours of returning to his hospital room, dad was up and walking, and 6 days later, he was able to return to his own home!

In November, 2008 we all made the 10 hour return trip to Mayo Clinic-Rochester for a six week follow up appointment with dad's surgeons, doctors, and oncologists. Again, all news was great! A follow up MRI indicated no cancer. The surgeon's report to the oncologists was that they had great confidence that they had removed all of the cancer. The radiation oncologists recommended no follow up radiation therapy. The medical oncologist consulted with dad about the prospect and possible value of adjuvant chemotherapy, but indicated that there are no good studies to support or negate whether or not follow up chemotherapy would benefit him in any way, or reduce the chances of the cancer returning. They indicated that they would leave that choice up to dad. After a couple of weeks spent researching and conferring with his local doctors and others, dad decided to forego chemotherapy at this time. He feels terrific. He looks terrific. His energy level is back to normal, and life in general seems to be getting back to normal.

This is certainly not the path our family had expected this cancer might take after reading about CC on the Internet. All the stories we read were bad...very few offered any hope. During long, late nights spent researching and looking for hope, I stumbled upon Susan Costa's website and story. I contacted Susan's husband, Jeff, in search of stories of hope because I was finding few if any and I needed to know that there was hope of surviving this disease. Jeff emailed back and has since been a constant source of support as our family has faced this “monster.” He agreed that there needs to be a place where people can report their stories of hope and survival, and then went an extra step and set up a forum on Susan's website where people could submit their personal stories. He asked if my dad would be the first to submit his story of hope and survival. These stories need to be seen. Without hope, it is very hard to fight this battle.

If you or someone you love is faced with the initial diagnosis of CC, know that all does not have to be “doom and gloom” with this cancer. Each case of CC presents differently, and there are people who have survived long term after a “bout” with this cancer. Indeed, there are people who have been cured through surgical resection, and new drug and radiation therapies offer hope to those for whom resection is not an option.

My Father's Daughter, Kirsten