March 20, 2012 at 1:04 am #58964
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.March 20, 2012 at 12:47 am #58963
Virginiagal, thanks for the clarifications! WOW! She has really been through the mill.
I still don’t understand 8 months to find out what it is as we don’t have 8 months to waste. I also never heard the terminology “we can only tell if it is CC by doing a Whipple”. I don’t think, I could be wrong though, that a Whipple is NOT performed if the diagnosis isn’t solid. While it is true the Surgeon really doesn’t know what he will find before he gets in there, he knows it IS Cancer or he would not do a Whipple. Someone with more Medical knowledge please correct me if I am wrong. Again, she needs to be seen by an ONC and a Surgeon who have had much experience with CC. In other words a major Cancer Center or Hospital who have dealt with this many times. It needs to be done ASAP.March 20, 2012 at 12:25 am #58962virginiagal172Member
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! XXXXXXMarch 19, 2012 at 1:21 pm #58961
Eli and all above, Teddy’s was much the same way BUT we were visiting our kids in Milwaukee and he went in to a distress mode. Before that it was only itching and you know how you think, oh, he has an allergy! All of a sudden he was a not so pretty yellow! Something else I have not heard of on here, we were out to dinner and he had a massive nose bleed. That was Saturday and on Monday my son’s Family Doctor saw him and sent us to a GI who did the Endoscopy and by Friday he had all his tests and was scheduled for the Whipple the very next week. Being out of town, being in a distress mode, MAN, did we luck out on doctors and Surgeons! Our 2 week visit to all the kids lasted almost 3 months! Guess that is why I don’t like to hear that it is taking so long for a diagnosis. Always sets off an alarm that the Doctor is not experienced with CC.March 19, 2012 at 5:23 am #58960
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.March 19, 2012 at 4:55 am #58959
I agree with Lainy… 8 months is way too long to diagnose this. I wonder how much experience your doctors have in treating CC.
Just for the reference:
My wife went to ER on April 18th. On June 1st we had a firm recommendation to proceed with Whipple. So it took us 6 weeks to go from initial symptom presentation to the diagnosis. The investigation was done by a group of surgeons who specialize in liver and bile duct surgeries. They do Whipples all the time. By the way, our hospital wasted some precious time. I think they could have completed the investigation in shorter time.
CC is rare and hard to diagnose. Many hospitals don’t have enough experience to treat it. The best place to get treatment is a high-volume center that sees large number of CC patients every year.March 19, 2012 at 4:53 am #58958duzalotMember
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.March 19, 2012 at 3:45 am #58957
Here’s one of the papers I read before we agreed to do Whipple.
Surgical strategy for bile duct cancer: Advances and current limitations
Section “PREOPERATIVE EVALUATION OF BILE DUCT CANCER” describes various diagnostic tests the doctors can use to figure out if the stricture is cancerous or benign. At the end of the section, they say this:Quote:In the absence of other explainable causes of biliary strictures, patients should be assumed to have cancer and operated on as such, accepting that 10% to 15% might prove to have a benign lesion on the final histologic investigation.
Our surgeons told us the same thing.March 19, 2012 at 3:29 am #58956
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.March 19, 2012 at 3:27 am #58955
Welcome to the forum and sorry that you had to find us. What you are going through now is very similar to what my wife and I went through last year. My wife is the one with cholangiocarcinoma. She had a stricture in the common bile duct. She got ERCP done to put in a stent. The doctor did the brushings of the stricture. The biopsy of the brushings came back as suspicious for cancer. The ERCP was followed by CT scan, MRI scan and Endoscopic Ultrasound (EUS). The doctor who did EUS also took needle biopsy of the lymph nodes. The biopsy of the nodes came back negative.
The surgeons said that all diagnostic tests pointed to extrahepatic cholangiocarcinoma. However, they could not diagnose cancer with 100% certainty before surgery. The surgeons recommended Whipple. They warned us about a small chance that the stricture could end up being benign. One surgeon estimated the chance of it being benign as 10%. Another surgeon estimated it as 3%.
I read tons of medical papers before we agreed to do Whipple. Every single paper confirmed what surgeons had told us. Whipple is the only way to rule out cancer with 100% certainty. Non-invasive tests cannot do it. So we agreed to do Whipple. The post-surgery pathology report confirmed extrahepatic cholangiocarcinoma.
When you said that stricture brushings came back as ‘inclusive’, did you mean to say inconclusive (lacking clear answer)? This is very typical for brushing biopsy. The brushings pick up a tiny amount of tissue. If this tiny amount of tissue does not contain any cancer cells, the doctors cannot confirm or rule out cancer.March 19, 2012 at 2:59 am #6527virginiagal172Member
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
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