Need help finding a doctor in California
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Lainy and Raye,
Thank you so much for your concern and responses. I have sent my CT scan reports and other reports to UCSan Francisco and Loma Linda Medical Center and got the same response – a transplant would not be an option for me. I even sent my papers to UCSan Diego to Dr. Lowy and a check for him to review my reports. He called me and sent a follow-up letter saying that surgery would not be a good option for me, it would be 5% to 10% chance of making it. I just went to Stanford and they did not even mention a transplant, just more chemo. The doctor who took the biospies sent them to Mayo Clinic to read. At the bottom of the report, it said if the doctor wanted a clinical consultation to call Dr. Gregory Gores or Dr Lewis Roberts. I did call Dr. Gores and he told me that if the doctor wanted to talk to him, he would talk to him. He would not talk to me. I have requested an appointment with Dr. Venook at UCSF and have faxed him my reports but have not heard from them. I did ask if he treated bile duct cancer and they said yes. He is a medical oncologist.
It is amazing to me how good I feel even though I have this awful cancer, but I believe it is my faith in God and all my friends who are praying for me.
I am so glad that Teddy and Raye were fortunate enough to be able to have transplants and are doing so well. My gastroentrologist who finally made the diagnoses said that with surgery there is a much better outcome, but that it was not an option for me. So, he referred me to a couple of oncologists, one for chemo and one for radiation. I guess I am looking for someone who has had successes with chemo.Rowena….We have a listing of major cancer centers. (Top bar, Cholangiocarcinoma, major cancer centers) however, it is not fully updated as of yet.
Being that you are located in central California you might want to go either, to Los Angeles (Dr. Lenz, UCSF, oncologist) or, go North to San Francisco. Dr. Venook (oncologist) is at UCSF in San Francisco. But, I agree with Ray and Lainy in that I would definitely gather more than one opinion in order to make sure that a possible liver transplant is ruled out, before proceeding on to other treatment options.
In addition to Ray’s recommendations: there is an ongoing clinical trial for liver transplants: Utah
http://clinicaltrials.gov/ct2/show/NCT00708877?condHi Rowena, I just want to add that as long as Raye mentioned Phoenix, where we live, one of the BEST transplant surgeons is Dr. James Cashman at
Good Samaritan Hospital downtown Phoenix. IF interested you can look him up on the WEB. I have met several people here who have had CC and the Mayo here is not as up on it as Mayo Rochester, MN or MD Anderson in Houston. Teddy’s CC appeared while visiting Milwaukee, WI. and it was an emergency situation. When we came back to Phoenix 3 months later it was Dr. Cashman who took over until Teddy was healed. Extremely impressive. He was the Transplant Direct at the hospital. Closer to you, we have a couple of people using a Dr. Lenz in I think the San Diego area. You can pull up Lenz in our search box at the top of the page. Good luck. P>S> You can also gather together your different test results and send them over to any major hospital you pick and they will usually give you an opinion. Again, good luck.Rowena,
Please visit these links as a second opinion option before you go further. Its worth your while. I was given 8 to 12 months to live at the time of my biopsy and diagnosis, but I was quite able and fortunate to qualify for a transplant at the Mayo Clinic.
http://www.mayoclinic.org/transplantcenter-rst/patientstories.html
Read the 1st and 4th stories here, and then peruse the Mayo site for CC information. Search Dr. Gregory Gores, my friend. Phoenix has a Mayo Clinic for oncology and transplant/surgery.
http://ucsdnews.ucsd.edu/newsrel/health/10-09Hemming.asp
Dr. Hemming is a truly brilliant surgeon. USC also has a great oncology team. Click the video to play.
Wishing you the best. You really need to have people treating you who have great experience with CC.
Raye
I live in Monterey County which is on the west side in central California. I was diganosed with bile duct cancer in July, 2009. I have had chemo (Genzar) and radiation. The CT scan showed that the cancer has not changed so the oncologist is recommending more chemo. I have a stent in one of the ducts to help with the drainage. I am hoping to find a doctor who is familiar with cholangiocarcinoma before I start more chemo. If anyone knows a doctor who specializes in our type of cancer in CA I would appreciate help in finding someone so I can get another opinion .
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