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Mark – thanks for the advice. I have been trying to get in touch with the USC physicians you referred to, but having some insurance authorization delays which is ever so frustrating. Getting authorizations is such an unrelenting process, I wish the doctors could review the case while we’re getting the authorization so there isn’t so much delay. Sigh. Sorry for the vent.

PCL – on the food, we have been doing a lot of cooking and nutrition adjustments at home. We never ate much meat (grew up by the ocean so fish is our staple) so Dad has been eating even less because he feels better without much meat. Instead we keep up his protein with fish and different types of beans. We are on the same page as you on not spending time or money on the herbal medicines. There is too much uncertainty there for us to feel comfortable putting that into our bodies. We are mostly focused on finding a balanced diet that gives him the strength to fight this disease and helps to cleanse out any toxins that have been accumulating in his liver which are hard to flush out on its own. So we generally stick to a very vegetable (both cooked and uncooked) and fruit diet, supplemented heavily with protein from fish and beans, and carbs from sources such as taro, yam and oatmeal. My parents also like soybean milk so we make it fresh everyday. It’s a great substitute for milk and very easy to make. It also doesn’t have any refined sugar or other processed items, which based on my limited nutrition understanding, helps with nutrient absorption as well.

Thank you everyone for your warm welcome and good wishes, it’s quite the blessing to have found this forum and such a wonderful supportive group of people. In the short span of time since I have been exploring this site, I have learned so much from all of your posts, and although each person’s experience is different, the information we have garnered has been remarkably useful for me and my family, in considering next steps and being prepared for upcoming meetings with doctors. A very sincere and heartfelt thank you, and our best wishes for everyone who’s fighting this!

PCL – thanks for the very helpful info you have shared. Below is more info on my Dad’s case. I was also struck by two of your comments which I thought I’d throw out before I forget. First is your comment on my Dad’s oncologist not being specialized in treating cholangiocarcinoma. I wonder how you think I can find out more about what his experience is – we were “assigned” to him after my Dad had his resection with Dr. Busuttil and was told by him that Dr. Finn sees many cases of cholangio. Second is a comment you made in response to another of my posts – you had referred to ablation as a palliative, not curative, procedure. I wonder if you could refer me to any publications you have come across that I can read to understand ablation and its impact on tumors, because as I was thinking about it, it seemed to me that if RFA could lead to necrosis, then how is it markedly different from resection? On this last point, I just got word from Dr. Choti’s office at the JHokpins (I had sent my Dad’s medical files to him for a review) which says he believes my Dad can undergo resection as the next step. This is a totally new development so we are just absorbing it…

In response to your questions on my Dad’s background – we are immigrants from China but we kids mostly grew up in California. My Dad is 63 this year, and quite healthy and active otherwise. Even now, he insists on tending to his garden, planting new trees now the weather is warmer, and doing a lot of other activities, though since his surgery he has started doing more reading as well so he can rest in between more physically demanding activities.

The mass was discovered in autumn 2011, but initially the radiologists diagnosed it as a cyst, then UCLA thought it was heptocellular carcinoma. Dr. Busuttil recommended resection even though biopsy wasn’t done because he felt the size of the tumor and its location was reasonable for resection regardless of what type of tumor. It was only from the pathology report after the surgery that we learned the disease to be cholangiocarcinoma and not heptocellular carcinoma. The surgery was done in March 2012 and straightforward from our understanding – the tumor was in Segment 6 so it was taken out along with the gallbladder (gallbladder was normal). There was a 1cm negative margin and no lymph node. We weren’t given the staging, although when I asked the oncologist last Wednesday what my Dad’s staging is now given his recurrence, he said Stage III or IV which seems quite an aggressive staging to me after looking at the NCCN guidelines. The two new lesions were discovered in his CT in January 2013 and they are 1.1cm and 1.2 cm, one located in Segment 7 and the other located in Segment 4/8. My limited understanding is that the Segment 4/8 one is the harder one for resection, though I’m eager to hear what Dr. Choti has to say given he seems to believe resection is possible.

That is the short summary of my Dad’s case – as of now, the UCLA oncologist has recommended ablation because the tumors are small and in locations that he believes are reasonable for ablation. I first asked him about resection and he seemed to think surgery is too invasive when ablation could achieve the same result without as much damage to the body. Then I asked him about follow up chemo after ablation and he said that it wouldn’t make sense because once the tumors are gone then there is no marker for tracking the efficacy of the chemo drugs. I get what he’s saying, but given that it’s fairly certain that there will be cancerous cells lurking after ablation, I am going to push him more to consider whether adjuvant/maintenance therapy is appropriate.

I understand that each person’s case is different, but as always, your input and guidance will be much appreciated. Thanks!!

Julie

Marion and Mark – thanks so much for the info!

Mark – I’m sorry to hear of your recurrence, I hope you are receiving good treatment and my best wishes to you!! If you don’t mind sharing, what doctors did you consult with at UCLA and USC? My Dad’s oncologist at UCLA is currently Dr. Richard Finn, and the surgeon for his resection last year was Dr. Busuttil. Dr. Finn has suggested starting with RFA for my Dad’s recurrent tumors (both ~1cm) but I would like to get second opinions so will reach out to USC. If there are doctors there you have had good experiences with, I’d love to know.

Thanks!!

Julie