Surgery on Stage IV Cholangiocarcinoma with Primary Sclerosing Cholang

Dr. Selby decided to do the liver resection in two stages. The first surgery was a center resection. And after some recovery time, he will resect the far left section which also has a tumor. That will take place in about 3 weeks. On the recovery note – Mark has been doing great. He is recovering slow and well. Everyone has been so wonderful. Thank you for your thoughts and prayers. You have all been so supportive and wonderful. We will keep you posted.

Thank you Lainy and thank you for your wisdom of getting the second opinion. I have a bit of a background in the medical field (very small) and when we went to UCLA, I believe they were very much interested in candidates for their clinical trials. Well, my background is sort of working in clinical trial studies so I felt like my husband was only being considered from that aspect. Thus if he wasn’t going to fit in the trial guidelines, they were not going to consider him at all or see him as a real individual. I believe UCLA is an excellent health organization, just wasn’t the answer we wanted.

Dear All – Well it has been a whirlwind holiday around our place. You would not believe it. First of all, I have to thank Patti for writing her story about Dr. Wallis Marsh. Because of her, I was able to email Dr. Marsh requesting him to review my husband’s case. To which he replied, “Yes”, and so much has changed since then. We were originally told by UCLA that Mark had PSC and he was inoperable. Further, that with palliative care, he had about 3-15 months to live. Well, after much research on my part and getting in touch with Dr. Marsh, he generously reviewed Mark’s case and determined that he thought he was able to have a resection. He contacted a colleague of his in LA at USC, Dr. Rick Selby and literally 3 weeks later, my husband had a 12 hour resection surgery just 2 weeks ago. This was possible because Dr. Selby determined, among other things, (after really reviewing the PETscans) that Mark did not have PSC which we were led to believe. Anyway, he is doing well and in a few weeks, he will be going in for his final portion of his resection surgery – Dr. Selby will be doing that surgery as well. Thanks to Dr. Wallis Marsh and our amazing surgeon Dr. Rick Selby at USC, Mark has been given extended life and we feel so blessed. We know he is not out of the woods yet, there will be therapies following the surgeries, but we feel it is worth it. Thank you Patti for sharing your story about Dr. Marsh – he is truly an amazing man.

What have I learned from this experience? Like many of you taught me? Don’t give up hope. Yes you can be realistic but educate yourself and do the research. Don’t take no for an answer the first time. My husband had no idea I contacted Dr. Marsh in the first place – he probably would have told me I was crazy to do so. He believed and trusted in our first opinion (i.e. UCLA) and he was ready to accept their recommendation of palliative care therapy. I wasn’t and now he is thankful I wasn’t. But for whatever reason, consider seeking other options if possible. There can be hope.