I may be a new member of the club
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Dear Ike, welcome to our wonderful family. You have come to the right place and I heartily concur with all that PCL posted to you. We are big believers in 2nd and 3rd opinions and you want to be sure you have all your ducks in a row. We would love to hear this is a false alarm, but if not, you have caught it very early. No 2 people are alike therefore don’t think that it is always a helpless situation. We have some very strong survivors on here. MD Anderson is considered one of the best for treating CC. You will find Barnes Jewish Hospital in St. Louis quite popular on our site as well as Mayo Clinic in Rochester MN.
Much good luck to you on your tests and please keep us posted.Hi,Ike,
After the 23hr observation and release from your local hospital;Try to make an appointment with MD Anderson hospital located in Houston and go from there including any surgery or procedure and consultation. Make sure you get a copy of everything from your local hospital and bring them to MD Anderson. If you had not done any CAT SCAN or MRI,do them at Houston,the radiologists will have more experiences to read the scans.
I will suggest you not do anything at your local hospital but continue your treatment at MD Anderson as soon as possible when you will be discharged tomorrow, MD Anderson is one of the best hospital to treat CC around the world.
If you are now being treated at MD Anderson ,then you should be happy that you have already been in good hands.
Ike,do not worry,take this one day at a time.
Keep us informed ;we always like to hear good news.
God bless.Thanks for the replies, I live in west Louisiana, but am currently in Houston (the doctor did not want me to travel for 24 hours after the spyglass ERCP). I am still in the early stages of coming to terms with this potential condition (hopefully the biopsy results will be back soon), not real sure where I go from there regardless of news. I lost my father to a rare cancer with similar survival rates a few months ago, and watched his fight for 13 months from the time he was diagnosed until the end and can’t stop wondering if such a sharp decline is in store for me.
Hi,Ike,
First of all, I am only a patient,I am not a doctor,and the suggestion I will make to you is just your information only, you must confer with your doctors first before adopt of any of the suggestions.
1.If you do not have any CAT SCAN or MRI with contrast for your chest,abdomen and pelvis you should have one before the removal of the gallbladder and repair the stricture of the common bile duct.This will provide the doctor(surgeon) a better idea of your cholangiocarcinoma(CC) and assessment for vascular invasion for your hepatobiliary system . I know doctors can take out the gallbladder and stones with or without open resection.But won’t it make you feel better if you know other parts of your biliary systems is in good shape too ?
2. If surgery is needed as you may suggested,2nd surgical opinion by MD who specialized in biliary,pancreas and liver is highly recommended .Where do you live ?
3.You are very lucky if this is your only biliary problem,you discover your problem much early than most of us.
God luck and God bless.Ike,Welcome and sorry you had to find us. I am a CC survivor and like you my only sympton was being itchy! Please read my story at thetelegraph.com under christmas miracle, it will give you HOPE!! (I also have it posted on my FB page Catherine Sims-Dunnagan. There is also another CC survivor story posted on there)
I would be very cautios about any surgery because this can cause cancer to “seed” . I would post where you are located, so people on this site can give you directions to some of the best CC doctors and hospitals. This cancer is very rare and really needs a specialist.
My miracles and heroes were Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Dr. Chapman and the Mayo-Clinic are on the same page about treatment options, so those are 2 good choices.
Lots of prayers-CathyI am a 42 year old man, It all started going in to see my GP to get my blood pressure RX renewed, I mentioned I had some general itching the week before, this lead to testing for elevated liver levels, then an untrasound the next day, which found a gallstone, then an MRCP before surgical consult the next week, which found a blockage common hepatic duct, ERCP revealed it was really a stricture, initial scaping biopsy negative, which lead to a second spyglass ERCP today, the results were looks “highly indicative of cholangiocarcinoma” waiting on biopsy results. The doctor wants me to have my gallbladder removed as well as resection of the duct regardless of biopsy result. So I am waiting and seeing, and hopefull for the best, the one bit of good news so far is the Gastrointernolgist says it looks locallized on the spyglass ERCP.
Maybe more news soon.
Ike
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