Topic: Going through testing

My name is Steve and I am currently going through EUS and ERCP testing for suspected Gall Bladder cancer and Cholangiocarcinoma in my bile duct. The previous biopsies were benign with a few A Typical cells. I am going to UC Irvine on Thursday (4/26) for another scope. The Drs are suspicious that I do have cancer but it hasn't been proven yet. One of my options may be to have the Whipple procedure. Can anyone give me advice and maybe a recommendation for Dr/Hospital on the west coast to have this done if necessary. I live in Reno, NV.

Thanks so much.

Re: Going through testing

Hi,
UCSanFran is the place for west coast of the disease.

EUS,ERCP may not be as good as MRCP to show the narrowing of the bile duct(stricture).
CTscan or MRI(you can do both MRI and MRCP the same time) and PET scan  of "the chest, abdomen and pelvis" are some of the scan for determining the status of the findings.(to learn more scans,go to experience forum under" radiation and options" .)
Atypical cells means you have cells that are abnormal in the area of investigation,and may or may not  become cancerous in the future.
Please take a look on our web site under the" hospital and physicans" experiense forum to fine more choice.
May I ask how old you are and your health in general? and what symptom prompted you to seek medical help and come to our web site for info.?
it will help me innhe future to answer your question.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Going through testing

Dear Flyboy, welcome to our extraordinary family but sorry you had to find us. I heartily agree with Percy and while I am not versed in all the newer tests my husband did have a Whipple 7 years ago at the age of 73 and it did give him a pretty good 5 1/2 years. I would also suggest you read up as much as you can as knowledge is powerful when fighting CC. When grazing our site, there is a search button at the top and if you type in a word like bile duct, many posts will appear on the subject. You are not alone in this and feel free to ask questions and please keep us posted on your test results.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Going through testing

Thanks so much for the replies. I am 65 and had really bad abdominal pain. went to ER and they did Ultrasound. Became Jaundiced and my Bilirubin went to 22 (normally around 4 because I have hereditary Gilbert disease) and liver enzymes were high. Had a HIDA scan and Gall Bladder was not functioning normally. Have had CT, MRCP, etc. Everything shows normal but Drs are suspicious. Have had CA 19-9 tumor marker blood work which is normal. 4 phase liver CT which does not show tumor. Dr suspect cancer in my Gall Bladder and bile duct so I am going for another EUS and ERCP.

Just got blood work back today. Bilirubin is 4.1 (pretty normal for me) and liver enzymes are in the normal range.

Any suggestions?

Re: Going through testing

Flyboy, sounds like you really have some good Doctors. No suggestions yet. Sometimes CC is just very hard to detect. The only thing we know for sure about CC is that we know not much. Waiting is the hardest part because you feel so helpless but when a DX is given you feel relief either way as a game plan is then set in place and the fright turns to fight. What do the Docs suggest next? Remember if you do not feel right about it get another opinion, we are big believers in that and Doctors understand. Listen to your gut as it is usually right.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Going through testing

GI Doc is the one who set up the EUS and ERCP second opinion at UC Irvine. I have talked to an Oncology Surgeon here in Reno who has done 40 Whipples (27 in the last year) as well as numerous other biliary surgeries. He feels a 50-50 chance I will need surgery but will await the outcome of the second EUS/ERCP. I still have some slight abdominal nausea occasionally during the day.
Tests do not show a problem in my pancreas nor liver. When I hd the MRCP it listed Liver-within normal limits. No masses visualized.
Gallbladder-within normal limits.
Bile Ducts- No intrahepatic or extrahepatic biliary duct dilation. No evidence of colonic obstruction.
Pancreas- no gross pancreatic mass. No pancreatic duct dilation.
Spleen- slightly enlarged.
The ERCP Biopsy lists:
Distal biliary duct core biopsy- Fragments of benign pancreatic parenchyma showing mild acute inflammation and fragments of benign columnar epithelium infiltrated by neutrophjils.
Distal biliary duct-Fragments of benign columnar epithelium infiltrated by neutrophils.
Gastric biopsy-Normal appearing gastric mucosa. A few A typical cells not sure reactive or neoplastic.

Re: Going through testing

Wow, that is a lot of Whipples. Teddy's CC was contained in the Bile Duct Valve where it connects to the Pancreas. He had a successful Whipple with clean margins. His liver was never involved. When it returned it appeared where the Duodenum used to be. I guess you will just have to sit tight until the Docs make their decision. It's the worst part of all this, the mental strain.  Please know that attitude plays a big part in treatment of anything and it sounds like you are ready to put the boxing gloves on. We used to say, "OK! Now we know what it is. Let's take care of it".

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Going through testing

Wish you luck in the 'what the heck is going on with me' diagnosis phase. My tumor was so small that ERCP was the only way they found the slight compression of my bile duct.CT, ultrasound didn't show it at all.  The blockage caused my billiruben to go up, but even with the tumor it was never as high as yours normally! Good luck again!

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Going through testing

Hi,

Since you have Gilberrt's disease;bilirubin(so does the jaundice) will go up or down depending on factors like infection,inflammation;stress level among others. I suspect you may have an infection(ie: like having a cold) prior to or during that period where your bilirubin went way up.

If  CA19-9 is normal and the Cat scans are clean as what the report you had mentioned above, I don't think you have any problem with regard to cholangiocarcinoma(CCA) at this point.Please remember,I am not a doctor and I could be wrong,I am just,like you, a patient.

But  as you know,CCA in the common bile duct or the extra-hepatic ducts (the stricture) require expert or GI specialist who FAMILIAR  with this disease to make the call;that is why a 2nd opinion like at UC San Fran  is important before you choose to have the Whipple prodedure done.

My suggestion is :
when you do the next ERCP;ask the doctor to order a CEA lab test for you along with CA19-9  in a month or so; and a PET Scan of" the chest,abdomen and pelvis" too .
Get a 2nd opinion  before any big surgery like the Whipple .
In that way you will get a complete picture of your health status.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Going through testing

Thanks for the replies. I went to UC irvine yesterday and had EUS, ERCP,and Spyglass procedures done. 7 biopsies were taken and sent for Pathology which I should get the report sometime next week (hopefully). The Dr said from what he saw and felt, it did not look like CC but obviously could not guarantee anything until the pathologist makes his/her determination. But for now that's good news anyway.

Re: Going through testing

Hi There:
I would suggest Jason Sicklick, MD at UCSD in San Diego.  He is from Johns Hopkins and Sloan Kettering.  Am sure he will answer a call or E-mail:  (858)  822-3967  and www.jsicklick@ucsd.edu
Good luck!  Talk to him first---

Re: Going through testing

Just got my biopsy results from the EUS, ERCP, and Spyglass procedures done at UC Irvine and all are benign. Yahoo!!
He wants to repeat it in 6 weeks.
Not sure what is causing the slight stomach discomfort nor the bile duct thickening yet but so far the news has been good.
Does anyone have an opinion about exploratory surgery or the Whipple procedure without a firm diagnosis of Cancer?
Thasnks,

Flyboy

Re: Going through testing

Hi Flyboy,

We discussed exploratory surgery with my wife's surgeon. He dismissed the idea.

If I recall his comments correctly:

1. If the tumor sits inside the bile duct, the surgeon cannot access it. Cutting the duct is not an option during exploratory surgery.

2. If the tumor is visible outside the bile duct, the surgeon cannot reliably distinguish benign from malignant by simply eyeballing the tumor.

3. They can't do a full biopsy exam in the middle of an exploratory surgery. What they can do is called "frozen section" biopsy. The surgeon obtains a small sample of the tissue. The pathologist freezes the sample and takes a very thin slice (a few microns). Frozen section biopsy is not 100% reliable.

We agreed to do Whipple without a firm diagnosis.  The firm CC diagnosis was established by the full pathology exam after the surgery.

Re: Going through testing

This paper argues that positive biopsy is not required to diagnose CC.

Is preoperative histological diagnosis necessary for cholangiocarcinoma?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504384/

Conclusions

* None of the currently available tests (including histological examination of biopsy specimens) can reliably distinguish benign from malignant biliary strictures.

The paper was published in 2008, before the emergence of SpyGlass. I don't know if SpyGlass is a game changer or not.

Re: Going through testing

Flyboy, take a look at this discussion:

http://www.cholangiocarcinoma.org/punbb … hp?id=8163

The situation is somewhat similar to yours. All tests are negative, yet the size of the stricture has increased.

Re: Going through testing

OK. thanks for the info. I am meeting with my Oncology Surgeon next week and I'll see what he has to say or recommends.
Is Whipple the only way to know for sure or are there other surgical options?

Re: Going through testing

The type of surgery they choose to do depends on the tumor location in the bile ducts.

If the tumor is in the bottom third of the bile ducts (close to pancreas and duodenum), they do Whipple.

If the tumor is in the upper third of the bile ducts (close to liver), they resect the bile ducts and part of the liver. This is different from Whipple.

If the tumor is in the middle third, they have an option to resect just the bile ducts. This is a much smaller surgery than Whipple. As far as I know, it's not very common. Smaller resection may be inadequate from oncology point of view, if the tumor proves to be cancerous on the final pathology report.

I found this paper very useful when my wife was going through diagnosis:

Surgical strategy for bile duct cancer: Advances and current limitations
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3095469/

18 (edited by marions Sat, 05 May 2012 03:03:27)

Re: Going through testing

Flyboy....is there a family history with similar symptoms?
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Going through testing

No family history with similar symptoms.

Re: Going through testing

So far all results are good, but I still have some itching occasionally. Any suggestions/opinions for that? Surgeon says no need for Whipple but would like to do another HIDA scan to check my Gall Bladder and repeat EUS/ERCP in 6 weeks.

Re: Going through testing

My stent came out on its own today during a bowel movement.
Has anyone had that happen before?