Here we are almost another year later and more CT Scans, biopsy, blood work, & EUS performed still not showing any signs of cancer. We just visited the Cancer Doctor last week and he told us that he believes that it is Bile Duct Cancer and from the other visits, recommending the Whipple Procedure again to rule out if it is Cancer.

I was wondering, if there is any other reason the Bile Duct can become blocked without being Cancer? It's just, we have been doing this for almost two years and I would have thought something would have showed up in the tests and nothing. Do we take the risk of the procedure after everything she has done, showing nothing or continue to monitor it with the scans and bloodwork?

Hi Eli,

I went back in my Mom's records (what little I have) The Doctor that performed the EUS had noted the Common Bile Duct was somewhat thickened at 2-3mm, but not such to make one think of Cholangiocarcinoma.(?) The CBD had no tumor associated with the pancreas causing the compression. He stated later on in his notes, I cannot be certain that this is not an early Cholangiocarcinoma however there was nothing to be sampled by FNA.(?)

It's all confusing to me/us and It doesnt help when we ask questions and they go around it and not point blank give us a answer.

I could not find where he had the size of the original stent, just that he had replaced it with the 10 French 5 cm long stent.


Thanks,

Teresa

Hi Peggy,

That makes me feel so much better. I am hoping that we will be able to get an appointment with him soon. I am keeping my fingers crossed. We live in Chesterfield, Virginia and I have been trying to do a lot of research on the Hospitals here locally (closer), but nothing really stood out for me and then after googling I came across Dr. Adams name. Thanks so much for responding.


Thanks,
Teresa

Thank you so much Eli! I have wrote your questions down and will ask the ONC those very important questions. I have a email into a Doctor Reid Adams with UVA in Charlottesville, VA in hopes to get an appointment with him for a 2nd opinion.


Thank You,

Teresa

Eli,

You wrote:

You mentioned your mom had multiple ERCPs done. Did they compare the size of the stricture between ERCPs?

I am not possitive. I will go back tonight and see if I can find anything in her records.

I am going to set her (My Mom) up with another appointment with another ONC to get a 2nd opinion.

Everything you guys have said has been such a tremendous help! I really appreciate each one of you for taking the time out and giving me advice. I am very grateful.

I did have one question, when they performed the test for you all did they actually see a tumor or like us where they have not identified one as of yet?

Thank again everyone

Thank you all so very much for your response, advice and support! I greatly appreciate it. I was in shock to see so many people reply. I am just in tears and so grateful to have someone to talk to that has experienced what we are going through.

She just recently went to see the Oncologist that was recommended by her Gastroenterologist.  It all started with Gallstones. We took her out to the Hospital because she was having abdominal pain and after doing an ultrasound they said that she had Gallstones that needed to be removed. She had her Gallbladder removed and everything seem to be going ok. She was sent home and over the weekend, 3 days later I went to visit her and she was laid on the floor in a fetal position in severe pain and sweating profusely. I called 911 and ambulance was dispatched.

When she arrived at the ER they took her blood and her liver test came back abnormal (I believe elevated) she was also jaundice. This is where it all started. She was admitted to the hospital and the Gastroenterologist on call that night tried a few times to perform a ERCP with no success. She was too inflamed and the Bile Duct was too narrow for him to get down there. She was then scheduled in Angio to have a plastic tube inserted in her side to drain her bile into a bag (I apologize, but I do not know the proper medical term for what they call this) He wanted her to go home and wait a few days to see if the inflammation would go down. After a few more visits the inflammation went down (almost 4 months later) enough for them to perform another ERCP to put a stent in and then they took the plastic external drain tube that was inserted in her side and put in a internal one in her.

She had a brushing of her Bile Duct and a 10 French 5 cm long stent was placed in the Distal Common Bile Duct.  I get confused cause in some of her records it says it looks more like cholamgistis and it doesn't appear to be neoplasm in the head of the Pancreas. They did say that she also had sludge in her Common Bile Duct. They also did a Balloon pull through the stricture area.  The report after the brushing said Atypical cells present suspicious for carcinoma, but it could not be rendered from this sample?

She was then recommended to another Doctor in the same practice to have a EUS (I believe that is what it is called) Where they go down with a camera and do a biopsy. He took a sample of a lymph node and the head of the Pancreas and it came back negative for malignant cells.

It's so confusing and we can't get any clear answers from either of them. One paper she has in her medical records says, Reason for visit: Pancreatic Mass?? So everything says something different.

After all this they both said that she needed to see an Oncologist which she has seen twice. Once when he order the CT, PET Scan and blood work. He was very adamant about her having a Whipple Procedure to rule out cancer.

It's just all so much and I don't understand a lot of it and when you ask a question they really don't go into detail. Everything I know I have learned from researching (Googling and joining groups)

I know that he said that he would see us in 6 months to re-do all the test again (CT, PET Scan and blood work) It's like we are damned if we do the surgery and damned if we don't. I just don't know what advice to give her. If she has the procedure on a probable cause there is a chance she won't survive the surgery and if she waits, it may be too late. It's like we are damned if we do and damned if we don't sad

We are in Virginia and the Oncologist is Dr Rose with Johnston Willis Hospital

Thank you all again for everyhing! XXXXXX

Thank you for adding me to this group, I really appreciate it. I am trying to get as much information on Common Bile Duct Stricture as I can. I had a few questions and didnt know if someone could give me some advice. My Mom started off with a Gallbaldder removal when she was then diagnosed with  Distal Common Bile Duct Stricture - 3 cm long stricture. She has had numerous ERCP's performed. They were able to do a brushing and it came back inclusive. They took a biopsy of a Node on the head of her Pancreas that came back non malignent. She has a stent in her Bile Duct now. The Cancer Doctor just order some test (CT & PET Scan, along with blood work). The Surgeon said the only way we could rule out Pancreatic/Bile Duct cancer is to have the Whipple Surgery performed. She has been going through this for about 8 months with still no clear answers. We met with her Cancer Doctor and all the test came back inclusive. Her Cancer Doctor said that if we decided not to do the Whipple Procedure we could have her come back in 6 months to re do all the test. He explained that he could not rule out cancer. I have read that this can be hard to detect and was wondering has anyone else gone through this and any advice would be greatly appreciated. I am soooo sorry that the message turned out to be thins long