Where To Find The Best Care/Surgeons For Bile Duct Cancer

My mother of 64 years was just confimed having Cholaniocarcinoma. I am her daughter and I am trying to find the best possible care for this rare and compicated cancer. I keep reading that an experienced surgeon and team is important but I am not having much luck getting surgeon names and hospitals. She lives in Southern California, the LA area, but we are not oppossed to travel. Does anyone have some direction to give me???

I went to a hospital in Houston, TX.
They have wonderful facilities there, caring staff, a hotel, etc. My surgical oncologist was in the Gastro dept. All they treat is Cancer and it worked for me.

Good luck and God Bless,
K.

Hello. My name is Lyra and I am 29 years old and live in Albuquerque New Mexico. My husband was diagnosed on May 15, 2003 with Cholangiocarcinoma. He died on January 31, 2004 this year. If it were not for the miraculous surgery he got, he would have only lived 2 days instead of 8 months! I really never check the posted messages like yours because he is passed away and I have gotten out of checking the updates to this site. However, for some reason I just clicked on to see and here you were. The surgeon who performed my husband's 20 hour operation to remove a large tumor in the common bile duct was part of a cancer center in New Mexico. He is one of the best in the country and specializes in cancers of the stomach.

I wish the very best to you and your mother. Please e-mail me if you need any other information or phone numbers. Blessings many times over. Sincerely, Lyra

I am 54 years old and am a cancer survivor for your mom's kind of cancer for over 4 years. I was fortunate enough that my doctors found my cancer early, and I was operated on in May 2000 (had the Whipple Procedure) by a noted specialist in pancreatic cancer in Philadelphia. I understood that he is one of the best in the country, but from the other messages I just read, there appears to be others in this area. I followed surgery with chemo and radiation. However, if you read the articles posted by the Cancer Treatment Centers of America, you'll find new information that indicates no radiation, just chemo afterward. I also know someone who had pancreatic cancer and was operated on and during surgery, after the removal of the tumor, he was wrapped in plastic and taken to the radiation department where he underwent radiation treatment while he was still opened. In doing so, more radiation was directed at the area of the tumor than you can receive after surgery. After the radiation treatment, he was sent back to the hospital for the completion of the surgery. I wish I had known about this treatment for myself. He's a 5 year survivor!!!! And he's doing great, with no recurrence whatsoever! Unfortunately, my cancer recurred in December 2002 and I have been undergoing more chemo since April 2003 (Gemzar). It has spread, but the Gemzar seems to be working even after over a year of treatment. I also received second opinions from several hospitals but they couldn't offer anything other than what I received. I am getting my treatments near where I live and I am very pleased with the treatment I am receiving. If you haven't already, contact an Oncology Information Specialist at CTCA for any input she can give you about their facility. I did, and was pleased with her assistance. Best wishes and God Bless to you and your mother!! My daughter has been taking care of me over these past 4 years, and I know the care-taker's role is extremely hard as well. If I may be of further assistance, please feel free to contact me. Fondly, Marsha B.

My daughter, age 44 had a modified whipple surgery over 5 years ago for a malignant polyp in the ampulla of vader. She even had some cancer cells in the pancreas and about 2/3 of it was removed. Her doctor in Memphis, TN did an excellent job on her surgery. I would highly recommend him to anyone needing similar surgery. Although she has had liver abscesses and was hospitalized off and on for a year, she is doing fine now and has gained back up to her pre-op weight of 145#.

My husband had renal cell carcinoma and malignant melanoma in 2000. Surgery was done for the renal cell and only 1/10 of his kidney was removed and he took no treatment. He went every six months for cat scans, bone scans and MRI. In April was his four-year check up and they found a tumor in his bile duct. Because they were unable to get a biopsy the liver transplant surgeon at Integress Hospital in Oklahoma City took out the bile duct and 1/2 of his liver. He suggested we go to M. D. Anderson in Houston for treatment. When we arrived down there they did all of his scans again and then found a tumor in his head and two in his pancreas. They decided to treat the cholangeo first with three months of Chemo (Gemzar and Cisplatin every two weeks. After the treatment we went back to M. D. Anderson and had Sterotactic radiosurgery on the head tumor and then they put him on Interferon for the renal cell in his pancreas. After two month the tumor in his head shrank 25% d the tumors in his pancreas are the same. We are going to be on Interferon until Jan 7 when we go back for scans. My husband is 64 years old and with these four types of cancers has never had any symptoms or has ever been sick even from the Chemo or Interferon which he gives himself a shot twice a day every day. He has amazed the doctors and hope that we can keep up the fight.

I was told that I had Pancreas cancer and a whipple was attempted on July 20th at Georgetown University. They failed to remove it and gave me 6 to 9 months to live. I called John Hopkins University and set up an appointment is Dr. John Cameron. He said he could remove it and he did on Oct 15, 2004. I actually had Cholaniocarcinoma that invaded the pancreas with negitive margins and cells in one out of seven lympth nodes. I highly recommend both Hopkins Hospital and Dr. Cameron however, I hear one of the world's top Pancreas surgeons is located at University of Irvine in Irvine, CA.

At present I am searching for advice on further treatment. Dr. Cameron wants me to take the Picozzi Regement but I am looking into other options. Anyone that has had the Picozzi I would appreciate hearing from you.

Did you find a great specialist in southern california? Did you find a great doctor anywhere? Who is it and what were your results.
My sister was just diagosised with Bile duct cancer that spread to her uterus and abdomin, she just had a baby 5 weeks early (he is OK). They told her it is Stage 4. What information have you found out, PLEASE let me know. Do you know anything about Canelim Capsules?

I'm not exactly sure what my purpose was for replying to your message.. I guess I was compelled by your young age as I am 25 years old and my 29 year old husband has been diagnosed with bile duct cancer. As with most, his prognosis is short. Because of the advanced stage I am told he is not a candidate for surgery. He is currently at UCI hospital in Orange, California. His oncologist Dr. Shin has recommended a clinical study that is a combination of capecitabine and gemcitabine(chemotherapies) and as I am aware now is the only option left that might be more effective then just improving quality of life. This is all so new..we found out 3 days ago. I guess any information/suggestions/tips for emotional support/physicians, etc. would be great from anyone. I have heard of canelim capsules and am searching for anyone that has infromation regarding them as well. I am so scared, I just don't even know where to start. I stumbled upon this website and decided to respond..I guess that is all. Thank you for your time.

This is in response to Glenn F., my brother has just been diagnosed with this type of cancer it sounds very similar to yours and we are searching for the best medical teams for fast consultation. The difference is that his cancer has begun to spread to his liver, very early stage of travel, he was in for a modified whipple when they discovered it had started to spread. They removed his gallbladder and gave him a roux-en-y, but did not remove the bile duct or really treat the cancer.

I live in DC and he would very easily be available to travel to Georgetown and Hopkins, you mentioned Dr. Cameron, where can he be located...we have also been looking to the Mayo clinic for help.

I am hoping we have caught this early and can come out with success, congrats on yours...and thanks for the very helpful and hopeful info on something that has left our family in a state of shock, my brother seemed to be a healthy 55 year old.

Maria M.