CBD stricture, relatively asymptomatic
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Lfs….I think that everyone should be aware that for some select people a liver transplant may be an option. That requires Cytology and FISH test.
You may want to read this:
http://www.mayomedicallaboratories.com/articles/features/biliary-fish/
And for further explanation:
The American Association for the Study of Liver disease Guidelines recommends that potential transplant candidates should be expeditiously referred to centers that have established protocols for oncologic assessment and treatment approved by UNOS.
AASLD Recommendations:
Patients diagnosed with early-stage cholangiocarcinoma and deemed unresectable due to parenchymal liver disease or anatomic location may be considered for LT in combination with neoadjuvant chemoradiation
AASLD Practice Guidelines:
http://www.aasld.org/practiceguidelines/Documents/Evaluation_for%20LT_in_Adults_hep26972.pdfHugs,
MarionThanks Marion for the additional information. Re: “percutaneous biopsies and/or biopsies performed at the time of endoscopic ultrasound should be discouraged… the biopsy could cause cells to spread” — wow, really? Talk about a catch-22 — how are they supposed to biopsy then? Much relieved that I have a consultative appointment with the ERCP physician this week who will review my MRCP scan and hopefully be responsive to my many questions including brushing…
Lfs…..I too would like to welcome you to our site and share a few thoughts with you. I understand your worry about a possible diagnoses of Cholangiocarcinoma however; at this point, much still has to be evaluated. The upcoming ERCP most likely will include a cell brushing, which will aid in the diagnoses. The latter has a high false/negative, but is needed nevertheless. Please note that percutaneous biopsies and/or biopsies performed at the time of endoscopic ultrasound should be discouraged. If indeed you are dealing with bile duct cancer, the biopsy could cause cells to spread. But, again, dear Lfs., try to relax; at this point you may still be dealing with something other than this cancer.
If possible, newly diagnosed patients should go to a major cancer center or medical institution that provides cholangiocarcinoma patients the option to have their specific case seen by a tumor board and/or multidisciplinary team before receiving any kind treatment. A tumor board consists of a medical oncologist, surgical oncologist and a radiation oncologist – this team would jointly view your medical records making a recommendation for the best course of treatment for each individual patient. A multi-disciplinary team consists of the above (a medical oncologist, surgical oncologist and a radiation oncologist) plus any or all of the following: Interventional Radiologist, Advanced Gastroenterologist, Cancer Registrar, Genetic Counselor, Clinical Trial Coordinator. It is very important to find a doctor and team who is experienced in treating cholangiocarcinoma.Make sure to request all copies including, physician report, blood test, scan results, etc.
The below link lists centers treating a high volume of cholangiocarcinoma patients:
http://cholangiocarcinoma.org/for-patients/major-cancer-centers/
Please stay in touch and keep us informed.
Hugs,
MarionI am hoping that someone in your area replies with first hand experience of ONCs for you but our list in the Menu is quite the tops! Good luck.
Thanks so much for the clarification and for being so responsive!
Sorry about that. Once you get the “final” diagnosis you may want to get a second opinion. All you have to do is get copies of all tests and LABS and take then to another ONC for a 2nd opinion.
Do you mean 2nd opinion on the scan? Or on who does the ERCP? Or 2nd opinion on results of ERCP? I don’t know what i’m dealing with yet until the ERCP is done.
Dear Lfs59, I am hoping someone in your area will respond with a suggestion for you.
In the meantime if you go to the Orange Circle (Menu) above and to the right, click on that and go to About the Foundation. Scroll down to Medical Advisory Board. While these highly qualified ONCS do not treat from the Board here check the site out as there may be someone near you that you could at least get a 2nd opinion, which we always highly advise. Best of luck on this.Thanks for answering, though I have to say I lost sleep thinking about it. The doctor who would actually do the ERCP is a colleague of my GI (who has been very responsive to me) and he is co-director of the hospital’s advanced endoscopy center. His expertise is in “all aspects of interventional endoscopy, gastrointestinal neoplastic disorders, pancreaticobiliary endoscopy, endoscopic ultrasound/FNA, therapeutic ERCP, mucosal resection and luminal stenting.” I feel like this is a good place to start, but I really want him to look at my scans, so I need to follow up on that. I am in the greater Washington DC metropolitan area, if you or anyone else has and additional recommendations of ONCs.
Dear Lfs59, welcome to the best place to be for CC Support. We just had some posts today about relying on the Radiologist report. Apparently an ONC needs to check both the report and see a copy of the Scan as well. If it was me I would go for a 2nd opinion ASAP as you want to be with someone with experience in finding and treating CC. Sometimes a really aggressive ONC is needed. Don’t let anyone slough you off until you feel you have all the answers. While CC is tough to diagnose, if it is in it’s early stages you have such a good chance of beating that monster down. Honestly a GI is not the place to be as an ONC is more likely to know about CC. Wishing you the best and I know you will get some more answers here over the weekend. Wishing you the best and please do keep us posted as we truly care.
Hi all. I was happy to find this forum! I am in my mid-50s, healthy and active. With my GI, i have been trying to get to the bottom of some chronic generalized mid-abdominal pain that i seem to wake up with. Long story short, after experiencing brief, intermittent pain for a few days in upper right quadrant, i went to GI. Suspecting gall bladder issues, had a normal sonogram followed by a HIDA scan that showed slow biliary to bile transit. That was followed up with MRCP that showed everything normal except a moderate stricture midway in CBD (estimated to be 3 mm). Now i am scheduled to have an ERCP with possible EUS. My blood work is normal, i don’t have jaundice or other symptoms typical of gall bladder or pancreatitis. No stones have shown up on any imaging. I am anxious about this whole situation after reading about the possibilities, esp since benign strictures seem rare and I don’t have the risk factors for that. I don’t think my GI saw the actual MRCP pictures but is relying on the radiologist report. Is that typical? She says it could just be sludge, but she wants to rule out a malignancy. I haven’t read anywhere that sludge could cause a stricture, so i am worried. How could everything else be normal but still possibly a malignancy?? Would appreciate any insights!
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