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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 16
I am so thankful for this board, I appreciate the fact that there are people out there that unfortunately know what we are going through. Since we were diagnosed with cc and now the mass was diagnosed in his pancreas I didn't think surgery was an option. I am hopeful since they have decided to do surgery but also confused because it goes against anything I've heard or read so far. Doesn't the mass mean the cancer has spread? Or is the surgery to determine that? I'm very hopeful and staying strong for our family... This is the only place I have to voice these fears or ask these questions that I'm sure don't have quick answers. Actually, I think voicing these fears enables me to move them out of my head.
Randy went and had the ultrasound endioscope a week ago Friday. During our Doctor visit they said the only reason they would do the ultrasound is if his blood test came back positive for autoimmune pancreatisis. When they called to schedule the ultrasound I cried tears of joy. From what I read this would be a much better diagnosis than cancer. Well as soon as the ultrasound was finished the doctor told me he took two biopsies and one had already come back positive with cancer in the tail of his pancreas. We sat on this information until Monday when our regular doctor phoned with the "official" results. Randy has a mass in the head of the pancreas and one in the tail. He scheduled surgery for this coming Thursday. He called it exploratory but said they would attempt to remove the tumor (s) if the could. My question is what if they can't?
Today I smiled. The doctor in Cleveland wants to operate. Randy had a full body CT done today and once the Dr reads them he will decide if Randy is able to have the surgery.
Today I cried... when we returned home this afternoon Randy started shaking uncontrollably. He was running a low fever of 96 degrees. I immediately called the Dr (who called me back within 10 minutes!) and they prescribed antibiotics. They believe his stent may be infected. He has improved some and is sleeping peacefully now.
I really want to thank you all for the support...
I can't thank you all enough.... you will never know how much I've come to depend on this board already. Just reading your words make me stronger than I ever thought I could be.
I want nothing more than to be strong and someone my husband can lean on. God knows he has always been there for me. I never imagined we would be in this situation, I guess no one ever does. I want to learn all I can and do whatever I can to beat this thing. But mostly I want to be there every step of the way and hold his hand and be his rock.
The "negative" test we got was a brushing that the doctor took during the ERCP. I've had three doctors tell me not to put any faith in this test because it often gives a false negative since the brushing just scrapes the surface. I was just upset that the doctor made a point to tell my husband the cancer test came back negative without telling him that it could be a false negative. I want to have hope and courage and I want him to have the same but I didn't feel it was right to tell him that. It was the doctor that had me keep this information to myself until we know more. Anyway, that boat has sailed so we must move on. I am getting myself ready for this doctor appointment on Monday. I know there is no turning back.
I know I should wait to talk to doctor on Monday but I feel so helpless and ignorant to this disease. I want desperately to do and learn everything I can to help my husband. The sad part is we went to the local doctor on Tuesday and he told my husband and I that the biopsy they performed on him came back negative for cancer. The specialist told me but not my husband or family about the findings and after reading his reports they suspected this almost a month ago! I go from one emotion to the next and sit here alone in my knowledge. A part of me doesn't want Monday to arrive because I know that this will become our truth then. I know time is of the essence and I would never miss this appointment but I do wish for the "boring" days we had only 3 short weeks ago. Thank you for all your help and for giving me someone who I can share this with. I've never felt so all alone. My heart breaks for the moment that my husband learns of this fight we are taking on. He posted an update on Facebook the other day that said "Dear Lord, I ask not for an easier life, I only ask you make me a stronger man" so I am thinking he feels it deep inside.
Also, there is a 11mm length area of a severe narrowing or constriction of the distal common hepatic duct just proximal to the insertion of the cystic duct. Proximal to this area of severe near-complete stenosis the common hepatic duct measures about 5 mm. The common bile duct distal to the area of the stenosis measures about 2 mm.
There are several lymph nodes seen in the periportal/peripancreatic/celiac axis area. This most likely will represent metastatic adenopathy.
I copied this word for word from the report. I have no idea what it all means and I really need to know. Please if anyone could help me even alittle it would mean so much.
Hello everyone.... we are still awaiting an appointment with the Dr in Cleveland. We went today and got the xrays and reports from the hospital Randy was in last week. The report notes:
The gallbladder is contracted and filled with sludge and contrast.
Pancreas: There is a regular mass seen in the body and tail of the pancreas. The mass causing occlusion of the splenic vein and encasement of the splenic artery. Significant splenorenal collaterals is noted. Mass in the tail of the pancreas measures 6 x 3 cm in diameter.
The term Klatskin Tumor of the hepatic duct was used. There was also a cyst noted on his kidney.
Anyone want to give me an idea of what this all means?
I just saw that my husband posted this to his facebook page today....
I ask not to be given an easier life Lord, please help me be a stronger man.
Today, I cried.
Thank you for the advice... I feel so much better knowing you all are out there. I'm so sorry that you are (or have) gone through this too. This SUCKS! Randy is feeling alittle better. I got Almond milk and he ate some cheerios. He also had one of the Ensure fruit punch and it didn't seem to upset his stomach at all. I did call the Dr. and he assured me this is all normal and his appetite will improve. I just couldn't figure out why he was so "healthy" when we went into the hospital and after this procedure all hell broke lose? The Dr told us before the procedure that his throat would be sore afterwards.... we have encountered alot more than that.
I bought some Papaya extract and Ginger root after seeing it on one of the posts here and he took it without any question.... usually he fights me on any vitamins or supplements I try to force on him - lol.
His urine is still dark and the yellow is still in his eyes. He had a stent put in Monday... how long will it take to clear up?
It has now been 5 days since Randy's scope. When we went into the hospital my husband walked in with no pain and some sign of jaundice. On Monday they did the brushing and endiscope, after which he started vomiting profusely. They kept him on antinausea medicine every two hours which kept him pretty much out of it until Wednesday. He was given an IV saline solution on Wednesday (the first and only) and sent home Wednesday evening. Since then he has been on no medication except for his usual insulin and high cholesterol medicine. I can't get him to eat anything. He is drinking alot of water and I've managed to get two ensure in him yesterday which caused him alot of chest pain. Hot liquids also do the same. He hasn't been throwing up at all but he hic ups alot and has alot of gas pain. He has been sleeping most of the time. The doctor said that the vomiting was a rare side effect of the procedure and he would be back to "normal" in a few days. I don't know what to do for him now. I tried smoothies, ensure, applesauce, rice, broth, toast, cereal. He ate about 1 cup of cheerios yesterday. I'm going to get him soy milk, since I've heard that dairy products aren't good. I can only get him to drink small amounts and I'm looking for any ideas. What is causing all the nausea and is this to be expected? He has to have the ERCP in Cleveland and I was wondering if this will start it all over again? This man has never been sick a day in his life. I don't know what to do for him now.
We are being set up to see Dr Christopher Siegel at Cleveland University Hospital. I have read and heard nothing but good things about him. I'm doing my best to put on a happy face until we can see him and find out what exactly is wrong. The doctor that showed me his file and procedure reports was confident of the diagnosis he gave me. I wish I knew I was doing the right thing in not telling anyone but I honestly haven't been given any conclusive formal information yet and I think the question of when to tell anyone should be my husbands call.... My husbands parents are in their 80's and live close by, we have 3 children, Bryan - 29 years old married and lives close by, Amanda - 25 who just moved to Columbus about 3 1/2 hours away, and Mark - 24 who lives in New York City. Thank you for listening, I feel so alone in all of this right now. But even writing this information down makes it too real.
Thank you... I believe I will take your advice. We are going to Cleveland sometime next week, I'll let you know.
Hello, my husband is 54 and in general good health. He was diagnosed as diabetic almost 4 years ago. Last week he had his routine bloodwork done and it showed elevated bilirubin levels. This was the 10th of September. On the 12th he had an ultrasound and we were told it was a gallstone. He had more bloodwork done on the 13th. On Friday the 14th he was admitted to the hospital for a CT Scan. They also ordered a MRI. We were told there was an "obstruction" in the hepatic duct. He had an ERCP on Monday and they inserted a stent. After the procedure the Dr told me there was a tumor and his gall bladder was "a mess". I started to cry and he told me "not to worry until I tell you to worry" and to pray that it was not in his pancreas. He also told me not to tell my husband or anyone in the family until we were able to see a specialist in Cleveland. There was no need to worry anyone until we knew what we were dealing with. So I didn't. My husband had terrible nausea after the ERCP and slept and threw up for the past two days. On Tuesday I was able to talk to another Dr from the Gastrionoligist office who informed me there was a large mass in the tail and middle section of his pancreas plus the tumor in his common hepatic duct. His CA 19-9 number was 3720. He used the term Klatskin's tumors and wrote down Cholangio Carcinoma for me. My husband came home today and has been sleeping well, his jaundice is all but gone and he is not as nauseated. The Dr that did the ERCP came in before discharge and told us that my husband has an "obstruction" that could be anything from calcium to cholestrol and that he was sending us to Cleveland University Hospital to have a scope ultrasound and he is confident that this doctor will be able to help us. He was so calm and upbeat I almost forgot what the other doctor had already told me. I have been searching the internet for any information I can find and came upon this wonderful forum. I would welcome ANY information.
Posts found: 16
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