CancerCompass message board discussion started by Seven22 on 4/29/2007 http://www.cancercompass.com/message-board/message/all,11674,0.htm Mon, 08 Sep 2008 00:00:00 GMT Mon, 08 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My dad may have bile duct cancer!  We don't know what to do.  Please help.  His story: It all started when doing a routine physical they noticed that his blood test for his liver was irregular.  He was told to have an ultrasound to determine the problem.  They found that his bile duct was dilated.  To look for any tumors he had a MRI and CT scan and they could not find any tumors.  They then decided to do an ERCP to put a stent in the duct and do some brushings.  They found atypical cells, but the doctors could not say that it was cancer but that the still suspected cancer.  Next they decided to do an EUS (I think that's what it was called? Some type of endoscopic ultrasound.) and still they could not find any tumors.  Next they did a blood test called a ca19-9 and it came back at 23 which is supposed to be the normal range.  The doctor still doesn't know and could not confirm that he has cancer, but referred him to a surgeon that now wants to do the Whipple procedure on a 50/50 chance that he may have cancer.  This seems very drastic on a 50/50 chance. 1. Is it normal for doctor's to recommend this when they still cannot say it is cancer?2.  We live in Cincinnati but are willing to travel to get the best surgeon.  Who is the best to do the Whipple if he needs it? 3.  Where is the best facility to go?4.  Are there other options instead of the Whipple (i.e. take out gallbladder and bile duct only?)? 5.  Who are the oncologists that specialize in this? Sorry for so many questions, but we just do not know where to begin.  Any help will be greatly appreciated.    Seven22 Sun, 29 Apr 2007 00:00:00 GMT Is your father having any symptoms other than the irregular bloodwork with the liver?  I am just wondering because I recently lost my mom to bile duct cancer (klotskins tumor) and my mom didn't have any "visible" symptons until approx 5 weeks before she passed.  At that point her ca19-9 was over 280, she was jaundice and according to bloodwork/tests/scans, it had already consumed her liver.  I would think if your father does have bile duct cancer and the only thing that makes the doctors think that is the blood test on the liver being 'off' then it seems as though it would be at a very early stage. If I were you, I would get some more opinions and get more tests done.  I would also follow up on another ca19-9 at some point soon to see if the levels have gone up.  If it turns out that it is not bile duct cancer, if there is any suspiscion of cancer, i would keep routine check ups.  My mom had breast cancer removed (3 lumpectamies and finally a masectomy-no lymph nodes removed, no chemo or radiation-all clear) in Nov of 2003 and passed away from the klotskins tumor in Dec. of 2006.  she didn't feel it coming, she had no idea she had it until it was too late.  I wish you and your father all the best.  I pray it turns out not to be cancer, but if it does, I pray that you will be able to treat it as soon as possible.  I have faith in today's medicine that if it is caught early enough, they should most definitely be able to do something for you. Take care and god bless Mary426 Sun, 29 Apr 2007 00:00:00 GMT Hello, my wife and I also live in Cincinnati. I have no idea if they specialize in bile duct cancer, but we had great care at Christ Hospital for my wife's brain tumor surgery and oncology/radiology. We see Dr. Albright, but he specializes in Neuro-Oncology. If you haven't already you might want to check out the Wellness Community of Cincinnati... http://www.thewellnesscommunity.org/cincinnati/ as we have found them helpful and they have a research facility there and also on D Level at Christ Hospital. All the best to you. Brandon-cg Sun, 29 Apr 2007 00:00:00 GMT Wow!  I don't have a lot of experience, but your dad has had all the tests I had prior to my surgery.  It must be driving the doctors nuts being unable to come up with a solid diagnosis.  I do know he brushings they take during the ERCP are notoriously unreliable.  My doctor even told me to expect a false negative.  He did manage to get a good look while he was there, though, and was able to make the Klatskin's call.  Nine days later I was having my surgery to remove the bile ducts and gall bladder.  I was fortunate to catch this early, because the overwhelming majority of Klatskin's aren't operable.  The second opinion suggested by Mary sounds like a good idea.  Your dad might not even need more tests if the they are willing to look at the MRI/CT/ERCP/EUS you've already completed.  We've had experience with MRI's in the past where the original doctors missed something someone else caught.  Of course, we also found out some facilities have cheaper equipment that produce lower quality films that make the diagnoses more difficult, if not impossible.Again, as Mary said, if they are having a hard time making the diagnosis, it could be early which is good and makes it that much more imperative to get a good, solid diagnosis.  My surgeon (Southern California) has had really good results when the Klatskin's is operable and followed with radiation and chemotherapy.I'll be praying for your dad and a good diagnosis.  Godisgood Mon, 30 Apr 2007 00:00:00 GMT Thank you for the information and support. If you don't mind me asking, how was your recovery after surgery?  If my dad does have cancer, I am hoping they will only have to remove his bile duct and gallbladder and not the Whipple since we may have caught it early. Seven22 Wed, 02 May 2007 00:00:00 GMT My recovery has gone extremely well. The doctor said it was because I was in good shape (well, sort of). I'm convinced it was because of answered prayer. I spent 3 days in ICU (that's "standard") and another 5 days in the hospital. The morphine pump I had came in handy for the first 5-6 days, but wasn't really needed after that. But, I know there can be lots of issues from the surgery (infection, drainage problems, etc.). I'm VERY happy so far with my surgery and recovery. I've talked with someone who had just about every complication you can have from the surgery, BUT celebrated her 5 year anniversary cancer-free this past Feb. I'll be following the same protocol as her: surgery, radiation, then chemo. I hope your dad doesn't need the Whipple. Please stay connected and let us know how it goes. Godisgood Wed, 02 May 2007 00:00:00 GMT Get him to the James Cancer Hospital in Columbus Ohio,, They are the Best around,,, My Mother Has stage IV Bile Duct cancer but they have been great so far,,, Ask Questions,, you cannot ask too many Questions... Even though my mother has little hope we pray every day for a miracle... I hope your father does well... Also go to Google search and type in Glyconutreints.. You will be amazed.... God Bless..                  M Keeping Faith2 Thu, 03 May 2007 00:00:00 GMT