choleangiocarcinoma (Liver Cancer)

melodyfj

My mother passed from choleangiocarcinoma. I would like to know where i could get more in depth information on this disease, as i would like to know if any one else in my family (my sister, myself or neices etc, would be apt to get this)
thank you. Any information would be greatly appreciated.

uvm85

Dear Melodyfj,

I am sorry to read about your mom. I am a 39 year old female and was diagnosed with choangio carcinoma in September. I had surgery 10 weeks ago to remove 1/2 my liver, resect my portal vein (tumor had attached to it) and "create" new bile ducts from my intestines. I was blessed with a physician who is not only brilliant, but incredibly compassionate! He is an hepatobiliary transplant specialist not an oncologist, but has extensive experience in this type of tumor. My last CT showed no spread, my lymph nodes were clear, and the liver margins were negative. I am considered cured. It is such a grim diagnosis to face, I sometimes have a hard time believing it is gone.
There is not a whole lot of information about bile duct cancer. About 3,000 people in the US develop it annually. So, that is about 1:100,000. It is hard to diagnose apparently (I had been tired for awhile and then suddenly became VERY jaundiced) and from what I have read not many physicians aggresively go after this. There are several known cause (liver flukes, primary schelorosong cholangitis for two examples) but many folks don't know what precipitates the cancer. They are not sure what caused mine. I guess it is more common in Asia, and in males over 60.
I wish you the best of luck as you try to cope with your loss.

dawnordus

uvm85 said:

Dear Melodyfj,

I am sorry to read about your mom. I am a 39 year old female and was diagnosed with choangio carcinoma in September. I had surgery 10 weeks ago to remove 1/2 my liver, resect my portal vein (tumor had attached to it) and "create" new bile ducts from my intestines. I was blessed with a physician who is not only brilliant, but incredibly compassionate! He is an hepatobiliary transplant specialist not an oncologist, but has extensive experience in this type of tumor. My last CT showed no spread, my lymph nodes were clear, and the liver margins were negative. I am considered cured. It is such a grim diagnosis to face, I sometimes have a hard time believing it is gone.
There is not a whole lot of information about bile duct cancer. About 3,000 people in the US develop it annually. So, that is about 1:100,000. It is hard to diagnose apparently (I had been tired for awhile and then suddenly became VERY jaundiced) and from what I have read not many physicians aggresively go after this. There are several known cause (liver flukes, primary schelorosong cholangitis for two examples) but many folks don't know what precipitates the cancer. They are not sure what caused mine. I guess it is more common in Asia, and in males over 60.
I wish you the best of luck as you try to cope with your loss.

My aunt was just diagnosed with stage IV choleangiocarcinoma 3 weeks ago. She developed gallstone-type pain and was jaundice. The mass in her bile duct was malignant and has spread to her liver and lymph nodes. The doctors say that surgery is not an option because the cancer has spread. She has had a medaport put in and a stent to drain the bile. She has been given about 3 months to live without chemo and possibly a couple extra months with chemo. The treatment is only to try and help make her more comfortable. Because of a set back with dehydradtion and an allergic reaction to morphine, she was unable to begin the oral chemo. Possibly next week. She is 74 and in fair health with a history of having had an illeostomy over 30 yrs. ago for ulcerative colitis. They say this is why she developed this cancer. She also has bronchiectisis and gets pneumonia at least once a year. Never a smoker or drinker! I understand that this is a rare cancer and also a very aggressive one. I'm just looking for advice or suggestions. I am her caregiver and she is more of a mother to me than an aunt. I will do whatever I must (and she will too) to save her life if possible. Please reply. Dawn

shellys

uvm85 said:

Dear Melodyfj,

I am sorry to read about your mom. I am a 39 year old female and was diagnosed with choangio carcinoma in September. I had surgery 10 weeks ago to remove 1/2 my liver, resect my portal vein (tumor had attached to it) and "create" new bile ducts from my intestines. I was blessed with a physician who is not only brilliant, but incredibly compassionate! He is an hepatobiliary transplant specialist not an oncologist, but has extensive experience in this type of tumor. My last CT showed no spread, my lymph nodes were clear, and the liver margins were negative. I am considered cured. It is such a grim diagnosis to face, I sometimes have a hard time believing it is gone.
There is not a whole lot of information about bile duct cancer. About 3,000 people in the US develop it annually. So, that is about 1:100,000. It is hard to diagnose apparently (I had been tired for awhile and then suddenly became VERY jaundiced) and from what I have read not many physicians aggresively go after this. There are several known cause (liver flukes, primary schelorosong cholangitis for two examples) but many folks don't know what precipitates the cancer. They are not sure what caused mine. I guess it is more common in Asia, and in males over 60.
I wish you the best of luck as you try to cope with your loss.

I felt like I had to respond to you. I was diagnosed with primary liver cancer in December 2002. I am 50 years old and was really taken by surprise. I have no family history of cancer and no history of anything that could contribute to a cancer. I had a liver resection (30%) and had clean margins and negative lymph nodes. I'll have a repeat ct scan on Friday. I do feel really alone with this diagnosis because it is so rare and also because it was detected in a early stage whereby I 've got a good chance of survival. This has been the only avenue to possibly talk to another survivor who knows what it is like to walk in my shoes. Thanks for your message. shellys

nvtyson

shellys said:

I felt like I had to respond to you. I was diagnosed with primary liver cancer in December 2002. I am 50 years old and was really taken by surprise. I have no family history of cancer and no history of anything that could contribute to a cancer. I had a liver resection (30%) and had clean margins and negative lymph nodes. I'll have a repeat ct scan on Friday. I do feel really alone with this diagnosis because it is so rare and also because it was detected in a early stage whereby I 've got a good chance of survival. This has been the only avenue to possibly talk to another survivor who knows what it is like to walk in my shoes. Thanks for your message. shellys

My father was diagnosed with this cancer January 16th of this year. He had been seeing a doctor about hip pain since last year in May. The doctor assumed it was arthritis pain and kept giving him steriod shots. Eventually they quit working and my father got really tired and he didn't have an appetite, which was weird b/c my dad liked to eat. AFter about eight months of steroid shots....the doctor finnally decides to schedule an MRI. The results were not good; it showed large tumors in each hip. They did a cat scan and the cancer had spread to all his organs. The doctor said he would live with out treatment for about six months. Hearing this news, I decided to withdrawal from NCstate to be at home with my dad. One month of oral chemo...and dad kept getting weaker and jaundice. One month later, we lost him. I'm so frustrated with his doctor.....why didn't he do an MRI sooner...why did he wait eight months down the road.? I googled the cancer and this chat room popped up. I just wanted to share my story.