Hello Everyone, it has been a few weeks and here is finally my story with a happy ending. Sorry in advance for this being so long....
At the end of December 2010, I woke up with jaundice and went to the emergency room of a hospital that is local to my home, suburb of Chicago. After numerous tests, I was told that I had cholangiocarcinoma, bile duct cancer.
After talking to a friend who is a radiologist in Dallas, she told me that while the suburbs are great to live in, it is not the right place to go for life or death situations. She suggested a very famous doctor who is director of transplant of organs in Chicago. After I met him and took more tests, he agreed that I had cholangiocarcinoma. But because he has only seen a few cases, he suggested that I go to Mayo Clinic in Minnesota for further evaluation.
After getting approved with Mayo, I took more tests and met with an oncologist who said that I do not have cancer but suggested I take more tests. So after 2 more weeks of tests, met with more doctors and said that I do have bile duct cancer and probably colon cancer also. So back again for more tests and I seriously dont think that an abdominal test was missed. lol .... So 2 weeks ago, I meet with 3 doctors, one being the surgeon. He said that Mayo doctors do not have any clue what I have but they do know that the tumor in my bile duct does not belong there and it must come out. They said that after it is removed, they will figure out what it is. Surgery was the next morning and lasted 6 hours.
It took less than 24 hours for them to figure out that I had Mirizzi Syndrome, Type 2. Again, a very rare case. They said that I was a very very lucky lady and Mirizzi mirror images Cholangiocarcinoma and this is why everyone was so confused.
I am writing this to tell you how important it is get a 3rd & 4th opinion. It is also important to go where your doctor has treated cases of this nature before. So please, read this site, although heartbreaking, it is very important that you are your own health advocate.
How am I doing? While I was at Mayo (they removed the gallbladder and common bile duct & replaced it with my small intestant), I got an infection and am at a friends with a large open wound. I have someone come in and change the bandages 2x a day, probably for another 4 weeks. But other than that I am great and I thank God everyday that I am alive. So while I am still weak, please let me know what I can do to help with this outstanding organization or if I can help any patient or help this site. I was brought here for a reason, so let me help.
Again, my message to every bile duct cancer patient or caregiver... PLEASE GET A 2nd, 3rd & even a 4th OPINION!!! Miracles do happen and never ever give up. God Bless everyone on this site and prayers go out to everyone one of you.