New ICC Diagnosis — Looking for Advice

My wife Lisa was diagnosed with Stage 4 intrahepatic cholangiocarcinoma on May 30, 2013. Lisa is 43 years old with no risk factors and is in excellent health otherwise. Obviously, the diagnosis came as a complete shock. Her only symptoms have been moderate abdominal pain and general fatigue for the past several months. She attributed the fatigue to the busy lifestyle of a mother with two small children (ages 1 and 4).

After an initial ultrasound identified multiple liver masses, a CT was ordered. The CT revealed four distinct masses – a very large tumor occupying most of the right lobe and extending into the left lobe measuring 15x12x13, as well as three smaller tumors in the left lobe measuring 2, 2, and 5.5 cm respectively. The right portal vein is completely encased by the large tumor and the right and middle hepatic arteries are also compromised.

A subsequent biopsy confirmed the diagnosis of cholangiocarcinoma. Additional imaging (CT, MRI, EUS, and PET) revealed both regional and distant enlarged lymph nodes; however, no additional metastases have been identified. A biopsy of the distant (aortacaval) lymph node was positive for cholangiocarcinoma.

We were referred to a GI oncologist at our local university medical center in Portland (OHSU) for consultation. We learned that transplant is not an option due to the intrahepatic nature of the cancer. We also were informed that resection would be unlikely because of the size of the main tumor, the multifocal involvement, and distant lymph node metastasis. The standard treatment of gemcitabine and cisplatin was recommended. Our oncologist discussed the potential for future treatments depending upon the chemotherapy response, including ablation, embolization, and regional chemotherapy via an intrahepatic pump.

We scheduled a visit at the Mayo clinic in Rochester the following week for a second opinion. The Mayo team (oncologists, hepatologist, and surgeon) agreed with the initial diagnosis and treatment plan. While at Mayo, a second biopsy was taken for genome testing with the hope of developing some targeted therapies based upon the unique pathology of the tumors.

We also had a phone consultation with an oncology surgeon at Sloan Kettering. The surgeon at Sloan is confident that Lisa could be a candidate for resection if we are successful in shrinking the tumors. The Sloan team recommend starting with regional chemotherapy instead of the systemic approach. As we were scheduled to begin the standard systemic chemotherapy the next day, we chose to stick with our original plan and perhaps travel to NYC for further evaluation depending upon the response to the first few rounds of treatment.

Lisa has successfully completed her first two chemotherapy treatments and so far has tolerated them well. Her symptoms have not changed much in the month since the initial diagnosis with the exception of increased fatigue 2-3 days after chemotherapy. She still has a fair amount of pain from the installation of her port a few weeks ago. We will have the first “post chemo” scan in another month.

Last week at our second visit with our oncologist, we learned that the local surgical team would be willing to consider Lisa for resection depending upon her response to the chemotherapy. After initially being told that resection would not be an option due to the distant lymph node metastasis, the tumor board discussed her case and they concurred that one positive node would not render her unresectable. We were also told that the lymph node could be removed during the surgery.

In addition to the opinions of the OHSU (Knight Cancer Institute) team, The Mayo Team, and the Sloan Kettering team, our medical reports and scans have been reviewed by a family friend who is an interventional radiologist at Loma Linda Medical Center. Our friend reviewed our results with his colleagues as well as a prominent surgical oncologist. The Loma Linda team assisted in the initial diagnosis and agreed with the findings above.

Lastly, at the advice of a CC survivor and frequent poster to this site, we have sent our scans to Dr. Selby at USC for an additional (and technically the 5th) medical opinion. We have heard great things about Dr. Selby and are anxious to hear his opinion and recommendations.

We had an appointment scheduled at MD Anderson immediately after our Mayo trip, but we cancelled the trip because Lisa was so exhausted after so many tests and procedures in such a short time.

Obviously, we have learned a lot about this disease in the past month; however, after reading the posts on this site I realize that we still have much to learn. I would welcome any thoughts, recommendations, words of wisdom, or treatment protocols that have worked for others with similar circumstances. Lisa and I are very motivated and determined to fight this cancer. My purpose in posting to this board is to leave no stone unturned.

Thanks for reading, and best of luck with all of your respective journeys.