Question about Common Bile Duct Stricture (Page 1 of 2)

Dear VirginiaGal, welcome to our extraordinary family but sorry you had to find us. Many times CC is very hard to detect, however, it bothers me that in 8 months time they still have no answer for you. I am curious as to where she is being treated and if this ONC has experience and how much experience in treating CC. What was the reason they stented her bile duct? Was she jaundiced? I am sure you will be getting some more imput here and I hate to add to your stress but something is not making sense to me. I hope to be proved wrong! No oneed to apologize about using space, that is why we are here.

Hi Virginiagal:  I just wanted to comment on the doctor doing a brushing of the stricture.  My stepmum has been going thru much of what your mom is going thru right now.  With her first stent placement the doctor suspected pancreatic cancer because of a shadow on one of her ct scans.  She was then sent to Cedars Sinai and had an ERCP.  The doctor at Cedars suspected cholangiocarcinoma at that time not pancreatic cancer, but the insurance company (HMO) only allowed the doc to rule out pancreatic cancer, which they did.  How crazy is that?  That same doctor insisted that she come back for another ERCP and a EUS, because he felt (this is the part I was getting to in the first place) that the original brushings done were not deep enough.  He said that he would prove that she did have CC and he was correct.  I find it interesting that he wanted the brushings deeper.  My stepmum is scheduled for surgery this coming Wednesday but it has been 4 months since she originally went to the ER with a strictured bile duct.

To add to what Duzalot wrote:

The brushing biopsy of the stricture is unreliable. When extrahepatic CC grows, it leaves behind fibrous tissue. This fibrous tissue contains few actual cancer cells. Negative brushings cannot rule out cancer.

Needle biopsy of the lymph nodes is also unreliable. They stick a very thin needle into a node. The needle brings back a tiny amount of tissue. Negative biopsy doesn't rule out cancer.

The surgeons don't need a positive biopsy in order to recommend Whipple. They recommend Whipple based on the *balance* of all available tests: blood work, ERCP images, biopsies, CT, MRI, PET, EUS.

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

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

Thank you all again for everyhing! XXXXXX

Lainy,

They do Whipple when they are reasonably sure it's cancer. Unfortunately, in many many cases, they can't say YES WE KNOW IT'S CANCER before Whipple. To say that, they need to do a full biopsy of the bile duct. Full biopsy can't be done before surgery.

In my wife's case, they warned us upfront: there's a small chance it's not cancer, but the only way to find out is to do Whipple.

Our surgeon said that, in his 20 years practice, he had two Whipple patients that proved to be benign cases after surgery.

Thanks, Eli. We were told that Teddy definately had Bile Duct Cancer (CC) before the Whipple. Don't know why but perhaps different Surgeons approach it differently. So guess I thought it was always diagnosed before they went in. The important thing is this Surgeon bought him, 6 years! Thanks again.

Getting excited to head to CA tomorrow - surgery Wednesday - it sure feels like it's been a long wait to get here.  Regarding the brushings - Stepmum's first brushing showed atypical cells, that's when the other doctor said to go deeper and he did that for the 2nd brushing which confirmed the cholangiocarcinoma.  Also, that same doctor did a "spyglass" on her at the same time as the 2nd brushing.  Do you think going deeper does make it more reliable?  Or is this just that particular doctor's preference?

Sheri,

I don't understand how the 2nd brushing could go "deeper". A brushing is a brushing. They vigorously brush the stricture with a brush. The brush picks up cells. It beats me how they can go deeper with a brush. When they said "deeper", did they mean deeper into the walls of the stricture? Perhaps "deeper" means that they went further up in the duct, closer to the liver?

SpyGlass device includes forceps to do a different kind of biopsy. Forceps bite a small tissue sample. They do go deeper than a brush. I'm guessing they bring back larger amount of tissue as well. Could it be that it was SpyGlass that made the real difference in your stepmom's diagnosis? Not the 2nd brushing?

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 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

Hi Teresa,

I'm another Virginia gal.  My husband was operated on by Dr. Adams in August '08.  You will be very impressed with him.  He is very straightforward and honest with you and answers all your questions, good or bad.   He told us had John not been in as good of shape as he was, they probably would have done nothing.  John asked him how he could stay in surgery so long, and he said he loves it.  In fact, he said John's case was a challenge for him and when he heard about it, he looked through his calendar to see if he had any openings because he's usually booked six weeks out.  From the time John saw his doctor until Dr. Adams operated was three weeks.  And we had to have a lot of different tests done during that time.  I actually had to hand deliver the final test results to Dr. Adams the morning of the surgery.  So, I will agree with Eli and say that your mom will be in good hands with Dr. Adams.   Hope you can get in quickly and that your mom will get some relief.  Good luck,  PeggyP