You are not logged in. Please login or register.
|La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
Join our new Mentoring Program
A new discussion board experience is coming this September!
After 10 years, we're upgrading our discussion board to a new modern system. The new forum will be easier to use, mobile-friendly and loaded with new features! We'll be taking all of the existing posts and users over to the new board, you won't have to do anything. If you have any questions, we've started a thread here to discuss.
Posts found: 7
Hello everyone - I wanted to give the group an update on my mom. She had her 6 month post-surgical appointment last week. Everything went great. The surgeon was more than pleased with her progress and her scans were all clear. She had numerous complications from the surgery, but her surgeon and family practitioner have been wonderful. It was very inspirational last Friday as we participated in our Relay for Life event and she walked for nearly 3 hours. The people on this board have been a gift from God and a special thank you to Percy and Cathy. We highly recommend Dr. Chapman from Barnes Jewish in St. Louis and Dr. Nagorney from Mayo clinic...they are the best of the best. Most of all, keep faith in God. The last 13 months have been quite a ride and there is no way we could have made it this far without His help. Thank you for all of your prayers. Jason
Mom had surgery today with Dr. Chapman at Jewish Barnes in St. Louis. The surgery took almost 10 hours as he resected 75% of her liver and reconstructed the portal vein. He said things went well and no new lesions were detected during surgery. He was able to directly attach the main portal vein to the left branch. The remnant liver tissue looks healthy and that up to 90% of her liver will return. He believes that the lymph nodes were clear but we will have to wait 7-10 days to get the pathology report. Based on the pathology report, she may (or may not) need to complete adjuvant chemotherapy. She is in ICU tonight for observation and will go to a recovery unit for 2-3 days. Dr. Chapman expects that she will be in the hospital for 7-10 days. Thank you for all of your prayers. This site has been a wonderful source of information. Jason
We have not been told what stage as of yet. That is one of the questions we asked the oncologist yesterday but haven't heard back.
Her CC was discovered accidentally. She had blood in her urine and her family physician ordered a CT scan since she had a kidney stone 4 or 5 years ago. He prescribed an antibiotic which cleared up her symptoms. Fortunately, she is a nurse and decided to have the CT scan to make sure there wasn't a kidney stone. Although there was not a kidney stone, the radiologist detected this abnormal mass which led to her MRI w/o contrast, MRI w/ contrast, biopsy and then PET/CT scan. Thankfully she had the first CT scan otherwise we would have never known there was a problem as she is asymptomatic with normal labs.
She called the lab yesterday and found out that her CA19-9 value is 1 but do not have a CEA value that we are aware of.
Lainy, I've read about CyberKnife on this website but it was not discussed at our initial surgical visit. I will contact the surgeon's office to see if they provide this option. I visited CyberKnife's website and noticed that most centers are not affiliated with any direct cancer center. Can you contact the CyberKnife location directly to see if you are a candidate for the procedure? Thank you. Jason
We called the physician today and asked if they had checked her CA 19-9. The insurance denied the test as they said it was experimental. However, mom paid for the lab test and it was 1 and they said anywhere 0-30 is normal. We're wondering why it is not higher as she has a 5cm tumor...is this normal? Jason
Thank you for the replies. We have copies of her pathology report, MRIs and PET/CT scan. I will check into the referral process to Mayo in Rochester. I do have a question about which tumor markers should be tracked with this type of cancer. I've read on the forum about CA19-9 and 125 markers, but that is a question that we did not ask. Jason
Hello everyone -
This site is a wonderful source of information. My mom (57 years old and otherwise very healthy) has been diagnosed with intrahepatic cholangiocarcinoma. She has a 5cm tumor in the caudate lobe of her liver. Currently surgery is not an option due to its location as it is near the portal vein and hepatic artery. Her oncologist has started her on gemzaar/cisplatin. She has weekly chemo on Fridays, 2 weeks on
Posts found: 7