Advice for Surgeon Choice in California
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Hi Arieolskie,
As Mary noted, there is a list of “provider specialist” on this website. To find it go to the “Newly Diagnosed” link in the top menu bar, and then select “Find a Local Specialist”.
I also was treated in the Los Angeles area, and was treated at USC Keck Hospital by the surgeon Dr. Sujit Kulkarni and the oncologist I am working with is Dr. Anthony El-Khoueiry. Both came highly recommended.
I have been going to USC Keck for all my healthcare needs ever since I was diagnosed with DCIS breast cancer in 2014. So the decision to stay at Keck was pretty easy.
I was at USC-Keck when a basic blood-test detected high liver enzymes, and then future tests/scans/ERCPs at USC-KECK diagnosed perihilar Cholangiocarcinoma. Dr. Van Dam was the doctor for my ERCPs and placement of stents. He was the one to recommend theses specific doctors as part of my team. I was very happy to see them listed on the recommended specialist list on the CCA Foundation website. The other surgeon that was highly recommended was Dr. Yuri Genyk. There are also 2 other KECK doctors listed, but I am not familiar with them, but if they are on the list, I’m sure they are excellent. FYI….I had a second opinion video consult with a doctor at Mayo Clinic in Arizona, and he said it is really hard to make it onto the “provider specialist” list on the CCA website.
It is great that you are talking to more than one doctor and it’s important to get a feel for who you and your Dad would like to work with. I can tell you that KECK hospital is great, and the care I received there was top notch.
Good luck to you and your Dad in making this decision and best wishes for much success in your path to beat this disease. To both you and your Dad… Stay strong and stay positive!
Laurie
Hi Arieolskie,
Thank you for posting. It is great news that your father’s chemo was able to shrink his cancer and make surgery potentially possible.
There is a provider map resource on the Cholangiocarcinoma Foundation website that lists surgeons experienced with cholangiocarcinoma. The three surgeons you mention appear to be on this list plus there are some others mentioned in your area. Choosing among several experienced surgeons would be a personal choice. Additional questions you might ask could include how quickly the surgery could be scheduled, and questions about the hospitals’ policies related to covid, and what follow-up is recommended.
You may wish to ask for more details about what happens after release from the hospital. I was released from the hospital a week after my surgery. After release, I saw the surgeon for follow-up just once about 2-3 weeks after surgery. At that appointment the stitches were removed. I did not see the surgeon again, after that meeting, as my follow-up was with the oncologists. The hospital arranged for a visiting nurse to come to my house every few days during the first couple weeks at home, to check on me and care for the incisions. A whipple is more complex than the liver resection I had — you may wish to double-check how necessary it would be for your father to stay in the SF area so many months after surgery, if he chooses the surgeon there.
The question about whether the surgeon undertakes the surgery himself/herself is one you should definitely ask if you are worrying. I don’t see why any of the doctors would be bothered by this or any other question you have.
Your father must be so appreciative you are looking out for him, and helping him with research. I hope other colleagues on this board can chime in here about their surgery experiences.
Take care, regards, Mary
My father was diagnosed with CC in summer 2020. He has been on gemcys, the tumor shrank to operable size and now he is completing the cycles and is hoping to do surgery this spring. We are considering several surgeons but want advice on how to choose, as we know it is a major surgery and could include a whipple/multiple organs will be involved. We are in Los Angeles area and we have consulted with Dr. Nissen at Cedars Siani, Director of Hepatobiliary amd Pancreatic Surgery and Liver Transplantation, Dr. Susan Warner at City of Hope who has been very helpful and does specialize in GI oncology surgery but seems to have less experience than Dr. Nissen, and also Dr. Carlos Corvera at UCSF who is Chief of Hepatobiliary and Pancreatic Surgery there. We felt best about Dr. Corvera, but dad does not want to have to travel to SF for surgery and find a place to stay there for 3-4 months there so we can be there if complications arise and then not have a surgeon to follow up with again in LA when he is back. We have heard that more experienced surgeons get better outcomes, so that would lead us towards Dr. Nissen, but Cedars Siani is a teaching hospital and we are unsure how much of the surgery would be done by him, versus fellows and others working/learning under him. Any advice on how to delicately figure out how much of the surgery a lead surgeon would do? And any advice on how to choose between the options we currently have? Or other recommendations for what we should consider?
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