March 22, 2012 at 3:48 am #58979
I have a few comments:You wrote: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.(?)
You put a question mark in there. I’m afraid I’m not sure what your question is. This note seems pretty clear to me. The bile duct was thicker than normal. But not as thick as what they usually see in cholangiocarcinoma.You wrote:The CBD had no tumor associated with the pancreas causing the compression.
A portion of the common bile duct sits inside pancreas. Think of it as a pipe going into a tunnel. In some patients, the stricture (narrowing) of the bile duct is caused by pancreatic cancer. Pancreatic tumor compresses the bile duct. Your mom’s report says she doesn’t have that. This is great news.You wrote: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.(?)
FNA = Fine Needle Aspiration. EUS doctor can extend a fine needle from the endoscopic probe and stick it into surrounding organs. They can use this fine needle to collect a tiny amount of tissue for biopsy. I don’t understand why he wrote “there was nothing to be sampled by FNA”. I don’t know enough to even begin to speculate.
In my wife’s case, the doctor noted that he had *chosen* not to sample the stricture by FNA. He was afraid to cross-contaminate the surrounding organs with cancer cells, if the stricture was truly cholangiocarcinoma.You wrote: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.
Sorry Teresa, I think I managed to confuse you. The sizes of the stents are not important. What’s important is the size of the stricture (the narrowing of the bile duct).
Here’s how our surgeon explained his plan. Do the first ERCP. Measure the stricture. How long and how tight it is. Wait 6-8 weeks. Do the second ERCP. Measure the stricture again. If the stricture is smaller on the second ERCP, it helps to rule out cancer. Cancerous strictures do not shrink between ERCPs. My wife didn’t get to do the second ERCP. We did EUS after the first ERCP. EUS doctor was pretty sure that my wife had cholangiocarcinoma. So we decided to go to surgery without waiting for the second ERCP.
Any questions – please do not hesitate to ask.
EliMarch 21, 2012 at 2:49 am #58978
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.
TeresaMarch 21, 2012 at 2:27 am #58977
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.
TeresaMarch 21, 2012 at 2:17 am #58976peggypMember
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, PeggyPMarch 20, 2012 at 11:23 pm #58975
Teresa, you are welcome!
I googled Dr. Reid Adams and I must say.. I’m impressed. He looks exactly the kind of doctor you want to see for a second opinion. He is a very experienced surgeon who specializes in liver, biliary and pancreatic cancers. He published a few medical papers on treating cholangiocarcinoma. He is a Professor and Chief of Surgical Oncology at UVA. Sounds good to me.
Good luck with your appointments and please keep us posted.
EliMarch 20, 2012 at 8:16 pm #58974
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.
TeresaMarch 20, 2012 at 6:23 pm #58973
They did not see the tumor when they examined my wife. They saw thickened bile duct walls (dilatation) and the narrowing (stricture).
Extrahepatic CC has different patterns of growth:
1. It can grow along the walls of the duct.
2. It can penetrate the walls and go outside the duct.
3. It can form a mass.
If the tumor does #1 or #2, there is no mass that the doctors can easily see.
In my wife’s case, the tumor did both #1 and #2. It spread along the walls of the common bile duct. It also grew through the walls into pancreas head.
You mentioned another appointment with another ONC. My opinion: you need to seek a 2nd opinion from an experienced surgeon who does tons of Whipples. The surgeon has to answer these questions:
1. Is there enough evidence to recommend Whipple?
2. Is the tumor resectable?
3. Is your mom well enough to undergo Whipple?
A surgeon who does a lot of Whipples might be in better position to answer these questions than a medical oncologist. Just my opinion, and I’m not a doctor.
EliMarch 20, 2012 at 5:12 pm #58972
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 everyoneMarch 20, 2012 at 5:55 am #58971lainyParticipant
Sheri, we got hail, rain, thunder, 57o!!!! But I loved it as we never get that. Hysterical, when one longs to see a gray sky! My Granddaughter got an extra Spring Day break at NAU!
You have a safe trip tomorrow and I have everything crossed for a great grand opening! Will be anxious to hear good news.
Say, do you ever come in to Phoenix?March 20, 2012 at 4:11 am #58970
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?March 20, 2012 at 3:28 am #58969duzalotMember
Lainy – we got THREE FEET of snow!!! Did you get alot of rain? SheriMarch 20, 2012 at 3:23 am #58968duzalotMember
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?March 20, 2012 at 1:57 am #58967
Lainy, I’m guessing Teddy’s brushing biopsy picked up a few actual cancer cells. As opposed to atypical cells they usually pick up. That gave them the confidence to diagnose him before Whipple. Just a guess.March 20, 2012 at 1:42 am #58966lainyParticipant
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.March 20, 2012 at 1:24 am #58965
“The report after the brushing said Atypical cells present suspicious for carcinoma”
That’s exactly what my wife’s report said. Her stricture ended up being cancer… confirmed after Whipple surgery. As I mentioned before, the brushing biopsy is unreliable. The brushings pick up only a tiny amount of tissue. If they fail to pick up cancer cells — and that happens very often — the doctors can’t confirm cancer. At the same time, they can’t rule it out.
You mentioned your mom had multiple ERCPs done. Did they compare the size of the stricture between ERCPs? Our surgeon told us that cancerous strictures never ever become smaller. Strictures caused by inflammation can become smaller, once the bile duct is unblocked. That’s one of very few ways they have to rule out cancer.
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