April 19, 2015 at 3:09 pm #58993
Thanks Abby and I am going to make one more suggestion so that members can find your post. Y attached to an old post and I am afraid they might not see this. Could you transfer it over to Introductions be making it the first post in a new thread? Just copy and paste it to a new INTRODUCTION thread. Make sure it shows that you need an Oncologist in the Miami Dade area. My parents lived there for 25 years off 163rd and Biscayne.April 19, 2015 at 2:46 pm #58994Abby wrote:Thank you so very much!! I hope that you are doing very well from your Surgery. My very best to you. Yes I am in Miami Florida, Dade county. I really don’t have very good luck with Dr.’s I almost lost my leg because 3 times the professor of orthopedics failed to support the osteotomy that shattered my femur and made my leg 3 1/2 inches short with the stem in my knee lucky a Dr heard what was happening and offered free of charge to try to fix it after 4 years of horrible suffering one surgery fixed the leg and I walk today with a slight limp. At least I got very lucky in the end as the UM wanted to amputate my leg.!
HugsApril 18, 2015 at 5:06 am #58992
Abby, I would strongly suggest another opinion first so you would go to an Oncologist who in turn would suggest an Oncology Surgeon. You want to make sure this 2nd opinion is given from an ONC who is very familiar with CC as should any ONC Surgeon should be as well. I find it strange that your present ONC has offered no treatment of any kind and you started 6 months ago. If you can tell us where you are located perhaps some members can come along with suggestions of who they have seen. As previously stated you really need to find out if it is CC.April 18, 2015 at 4:20 am #58991
Dear ,Lainey and Marion,
Thank you so much for your replys. The website you had sent me I had read. I had the ERCP to see if I haves Enough small intestine. I only have about 10 feet left. As a child I grew excessive amounts of scare tissue that caused gangrene so they had to remove quite a bit of them. I would really appreciate if you could tell me what kind of doc surgeon I should see. The stricture has been 15 mm for the last 6 moths. So says all the test I have had. Anything you can suggest I would very much appreciate. My very best too both of you.
HugsApril 16, 2015 at 6:31 am #58990marionsModerator
Abbie….welcome to our special group. I recall a similar posting about dilation and stricture. In this case the stricture was measured during the first ERCP and a repeat ERCP was performed 6 to 8 weeks later. If the stricture is smaller on the second ERCP, it helps to rule out cancer. It had been explained that cancerous strictures do not shrink between ERCPs.
The surgeon then recommended surgery warning the patients about a small chance for the stricture to be benign.
It also referred to a study in where it was mentioned (toward end of study) that in the absence of other explainable causes of biliary strictures, patients should be assumed to have cancer and operated on such, accepting that 10 to 15% might prove to have a benign lesion on the final histologic investigation.
I am not a doctor hence I recommend you consulting with a surgeon “very” familiar with this disease.
Good luck and please keep us posted.
.April 16, 2015 at 2:06 am #58989
Dear Abby, welcome to our remarkable family and the best place for CC support. I think it is time for you to get a 2nd opinion. First of all you want to make sure that you do or don’t have CC. We can only give advice on CC and it seems to me you definitely need another opinion as 6 months is way too long. Make sure you go to an ONC who is very experienced with CC and that he uses a Hospital who has also had experience with CC. Where are you located ? I take it there has been no treatment so far? Not acceptable for what ever it may be. Please let us know what is found out as we are anxious to start helping.April 16, 2015 at 1:33 am #58988
Hello to all. I am very happy to have found this place. Reading all of what you all have been through made me feel as if one of my family members was writing to you about my own journey. I to have Bile duct strictures. My entire bile duct is dilated to 15mm. They also say I have a Choledochal cyst type 1, Stones or cyst in gall bladder. My CEA went up fro 8.4 to 10.5 in 2 weeks Had MRCP, ERCP, CT , MRI and xrays.. My ERCP came back with abnormal cells and pathology from biopsy say Metaplastia. I had a Pet scan done today. All of this has been going on for 6 months and still I do not have a answer as to if it is cancer or what. Please can any of you please give me some information. I am so worried and I jusy don’t have much trust in Dr.’s. I would so greatly appreciate any input you could give me. I wish all of you the very best in your own journeys and look forward to meeting and chatting with youOctober 9, 2012 at 11:10 pm #58987marionsModerator
Virginiagal…you might want to print out Isaac’s posting and take along when visiting the physicians. Isaac’s experience is a case they might want to look at.
Hugs and good luck,
MarionOctober 9, 2012 at 2:20 am #58986
Virginiagal, This is all so confusing but I have one big question. Did you ever get to see Dr. Reid? Hopefully it is not CC but if it is so much time has been wasted. My own personal opinion is you need to see this Dr. Reid, ASAP since it sounded like he was good and he was near you. The Whipple is the largest surgery to the human body. Not life threatening but huge. In all this time now has your Mom got any other symptoms?October 9, 2012 at 2:20 am #58985EliParticipant
To answer your question:Quote:I was wondering, if there is any other reason the Bile Duct can become blocked without being Cancer?
Yes, the bile duct can become blocked by a benign stricture. Unfortunately, the existing diagnostic tests cannot reliably distinguish cancerous and benign strictures. They look almost the same on all tests.
Benign strictures can be caused by:
* Surgical trauma from prior surgery in the area, such as gallbladder removal.
This is not a complete list. I recall seeing medical papers that discussed about 5-7 different types of benign strictures. I will post the links if I can find them.October 9, 2012 at 2:13 am #58984pcl1029Member
I think, when in doubt like in your case,go for a 2nd opinion by another GI or liver specialist may be needed. Major hospitals like John Hopkins or Mass General hosp. or New York Pres. hospital etc.
I do not think I can provide any good answers for you.
God bless.October 9, 2012 at 1:06 am #58983virginiagal172Member
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?October 2, 2012 at 5:05 pm #58982pcl1029Member
Yes, you should go back to the doctors to have follow up CT scan done and lab work like CBC,CMP CA19-9,CEA DONE FOR THE GI Doctor to compare.
God bless.March 29, 2012 at 6:49 am #58981isaac-1Member
Your mother’s story reminds me a bit of my own (which you can read about on here in more detail if you look at my old messages), just under a year ago I went in to see my doctor thinking I was a ,mostly healthy 42 year old man, who was just getting over a broken back due to a fall a few months earlier, on a routine follow up visit, I mentioned I had been experiencing some itching and he did blood work for liver levels which started the ball rolling. Ultra-sound found gallstones, referral to a general surgeon then to an MRCP which showed a “blockage” in the common bile duct, so the surgeon sent me to a Gastroenterologist for an ERCP, which found the blockage was really a stricture (scraping biopsy negative, but also told they were unreliable in these cases), on to a specialist Gastroenterologist who did a Spyglass ERCP, biopsy again negative, but visually he reported it looked “highly consistant with CC”, places a stint to help things flow so on to the speciality liver surgeons. I have my fist gallbladder pain a few days before my appointment to consult with the surgeons, local doctor puts me on antibiotics knowing I was scheduled to see a surgeon within a few days, I see the surgeon am told it is an 80% chance of CC even with negative biopsies, he is concerend about the gallbladder infection, schedules me in for surgery (ended up getting a Roux-en-Y hepaticojejunostomy instead of Whipple due to placement of the stricture higher up in the bile duct, similar surgery though), surgeon has a CT scan done, and ends up admitting my to the hospital on the spot, gallbladder is highly infected, erored into the liver, looks like the stint blocked the opening to the gallbladder which was already mostly blocked by gallstones, they put a drain in and have me on IV antibiotics for a week, then home for a week or so to let the infection clear up then back for the big surgery with a drain pouch taped to my side. I have the big surgery and thankfully it turned out the stricture was benign, the surgeon said it was best to do the surgery anyway as even if benign strictures can turn into CC a lot of the time. Spent a week in the hospital, then several weeks recovering at home, the surgery was rough, but the real issue was the fatigue afterward, even 6-8 weeks later I barely had the strength to drive myself to the store to run short errands. Anyway I just had my 6 month follow up, liver lelels look good, but the doctors are telling me it will have to be checked every 6 months from here on out.March 22, 2012 at 4:20 am #58980peggypMember
I am very familiar with Chesterfield. I used to drive from Staunton to Moorefield Park to attend business meetings. Now, I have a sister-in-law who is living in Chesterfield. Small world. My husband has a friend from highschool who had a liver transplant done at one of the hospitals in Richmond. I’ll try to find out which one. I know you will love Dr. Adams, and I so hope that you get in fast. Love, PeggyP
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