Hello Sweet green, I am sorry for your loss of your husband, I am a resected cc patient and recently an MRI indicated the site of my bile duct resection is becoming restricted, and I questioned what to do,concerned this could be the beginning of it's return, the doctors all consulted one another, took a while and they came back with "it is scar tissue building up at the site of duct resection, if it becomes a problem, stent it." and he added, yours is a variety of cc that is "cyst like" I believe he said, and not to worry about it . ??Reading this article makes cystic bilary tumors worse than cc with equally bad survival numbers. I am very blessed in many ways, it seems my bile duct cleared itself, and I can eat chicken skin without pain if I wish (love it, can do a little ) So who knows ? If I had rushed to get a stent then they need bimonthly replacement and now you risk pancreatitis every time you get one.You are your own advocate and educate yourself and make your own decisions. I am the only one in my family with any symptoms of liver problems. I have not seen my onc since all of this, I am due in feb. sometime. Perhaps I will learn more then....best wishes, Pat
Re: Has anyone had surgery on there liver more then once to remove a tumor (8 replies, posted in Introductions!)
Marco, I knew a woman who I was a support person for had a liver resection, and upon her first scan, 90 days past surgery found another tumor, which her surgeon said he would go back in and remove. she was early fifties and it was hard on her to have healing tissue recut and resewn , the poor woman had a lot of pain and another tumor came a few months later, she chose hospice after trying chemo and being totally exhausted. This is a tough road and most surgeons only try this once. I hope you find a way, Pat
Danny, just a thought, in earlier posts you mentioned that Martin juices his fruit and such, that can give a healthy digestive tract a real challenge, the outcome is predictable. Maybe try more solid food and bananas, works for me, Pat
Re: Sad news. Our beloved son, Jeff, has passed away. (16 replies, posted in General Discussion)
I am so sorry to read your sad news about jeff, my god bless you both, Pat
Sometime in late september ( I didnt write the exact date) I past my eighth year past diagnosis of intrahepatic cholangiocarcinoma, and I am not a health guru or anything like that, I live a ordinary life and the only thing that seems to have really saved me was early discovery and a slow growing tumor. I am blessed with a supportive family and I had a good job with excellent health insurance and many good doctors and a ultrasound technician that called the soft tissue tumor in my bile duct "possible cholangioccarcinoma " in her report, sending my doctors in the right direction right away.I had my liver and bile ducts resected in january of 06' so my message is things can go well, you are your own advocate, listen close when any doctor or nurse speaks to you. More importantly, listen to your body, it will let you know when thing aren't right. My life has been rather busy lately but I am doing well and my mantra lately has been to help others that life has overwhelmed. I hope to have more time for online activity this month and it is good to be back, Pat
Hello all....It has been a while since I have even opened the laptop, a dear friend passed in june and he was the only child of a 92 year old woman who has had a rough couple of months, she is the sweetest old gal I have ever known. It is sad when you out live all your family members and you feel alone and scared.She has church members and a few people who care, one younger sister and they try, but Kay was a loving mother who never gave up on a young man with addictions.I am trying to help her sell her home, put a life time of nick nacks on ebay, all with a story and tears. We all hope for long lives with most our mind and body intact and functional, but the sadness of the eventual loneliness is not part of our wish. I have been there for her, cut her lawn, spent time looking for a retirement home where she wont be so alone and have others to talk to and do things with. Life isn't fair but we can fight for what we feel it could be. I guess I could sum it all up by saying God gave me people to help. God bless you all, I'll be back, my bile duct restriction is scar tissue according to my surgeon, so when it becomes a problem he says stent it, Pat
Hello Dorien, It was 5 months between initial discovery of a tumor in my bile duct and surgery. It was still stage 1 when I was operated on so I would say my case was slow growing. I have read everything relevent to this cancer and one thing I read was a study linking coffee drinking to slowing the advance of most liver cancers. I drink 2 cups or more a day. Who knows what may affect the outcome but mine has remained in check for almost eight glorious years. One day hopefully medicine will figure out what triggers this errant growth and also what suppresses it.The human body is an amazing thing and they say every cell in the body replaces itself every thirty days. I believe it is this mechanism which goes wrong to form cancer. When a liver containing a tumor is surgically removed what is the blueprint for the body to regrow all those cells? And when the body regrows an assembly such as a liver lobe would this blueprint reform a tumor when reproducing what was there? I have many questions for my maker when I meet him, take care, Pat
Re: Let battle commence again ... Sensitive reading .... (24 replies, posted in General Discussion)
Sandie, First I am so sorry for your setback in this battle. We live with this over our heads and we live our lives as purely as possible. There is no reason to apologize for your diagnosis, ever. How everyone deals with your condition is very complex, and most all the population has no idea what the inside of your shoes feel like. It's like a nuclear war is going on but nobody but you is affected. Keeping your cool is tough and only a select few understand your distress. This site has people who are familiar with this and we share your triumphs and setbacks. Don't ever worry about sharing what makes us all cry as we will cry and hurt with you. Hopefully knowing that makes you feel a little better. Please keep the strength you have shown til now and know I am hurting with you, Pat
Its fun to laugh Moonpie but it is very important to listen to our bodies when we are afflicted with any digestive disease and the end result of digestion is a key indicator when things are right or wrong.Don't stop looking, Pat
My oncologist reviewed my MRI this week and says he doesnt like the look of it. They are going to run it by my surgeon who is no longer practicing surgeries but he is consulting or something. He says there is no nylon fitting where the ducts are rejoined. there is scar tissue or something (eek) growing and restricting the duct from 7 mm to 3 mm where it is repaired. Dr. Pelley says it is a major surgery to do anything with this. The jury is still out right now. I lost a dear freind this week who I had helped during his battle with throat cancer. I have been asked to give his eulogy and I have been inspired by the kind words I read on these boards. I will let you know when the man who saved my life once reviews the the disc and tells us his recommendation. Pat
If your stools are marbled with dark and tan have your horoscope checked.
From now on, you can tell people you really know your s*** !
Light colored stool is an early sign of bilary obstruction. A very lean diet with all fruit and vegetables and rice will give the same outcome so to speak.This has been my observation ...One time my stools were light tan for a week or more I panicked, called my oncologist, set up a scan right away and all was fine. stools are white after a scan, if you are paying attention, and this whole life of having cc hanging over your head makes you nervous about every little thing. good luck moonpie, Pat
After my surgery while I had a piece of rubber tubing coming out of my side to a drain bag, when I was being prepared to go home the nurse yanked the tubing out and it pulled off this three way fitting that is designed to break off and become a two way fitting, that is what my onc. told me when I asked about it years ago, just thought someone would have some knowledge of this. Seems this sort of repair doesn't usually have to last so long most the time, scar tissue could also build up and restrict the junction perhaps ?
I am so happy for you Lisa , congratulations ! I hope you have many more, Pat
Finally got results of scan today, Liver looks clear however where the right hepatic duct was joined to the common bile duct there is a reduced inside diameter to 3mm in this area. this was noted by radiologist. I believe there is a nylon fitting where the two bile ducts are joined. does anyone know how small this opening can be before it is a problem? My oncologist will be reviewing it later this week. I guess it is still up for review. does anyone know how two bile ducts are rejoined during a liver resection? thanks, Pat
Dear Bob and Nancy, you have raised an incredibly thoughtful and considerate young man who is caring and sensitive. That is commendable in this world of self centered egotistic people. The job of raising a proper human being is complex and difficult, and your finished product is a reflection of you both, you must be outstanding beautiful people yourselves. I wish you many more special memories together, Pat
Hello Patricia and congratulations on your huge success~! Your surgeon felt good about getting it all and you found it early, sounds like you are truly one of the lucky ones. I saw my gastroenterologist last week and he pulled out the record from November of '05 and he attributes the swiftness of action in my case was a report by the ultrasound technician that called the soft tissue tumor in my bile duct as very strong possibility of being Cholangiocarcinoma. I was blessed with early diagnosis as well and sadly it doesn't happen often enough. I wish you continued success with this awful disease, Pat
Lisa, I took milk thistle right after surgery, while the liver was still regenerating. My daughter came up with a herbal liver support suppliment that I took for about two months. I don't know if it made a difference, but the end result was good. When one detoxes the liver, where do those toxins go? I believe the bile ducts so who can say for sure if this is ideal. I took it and my results have been good so far, take care, Pat
Michele, this cancer is like a meteorite hitting a crowd.It can afflict anyone, even a priest or a nun or a doctor, people who lived relatively pristine lives, I am sorry your husband was diagnosed with this awful disease, it is his choice to make, and it is difficult for me to imagine how terrible he must feel to say that.Value every day there is nothing worse than waiting for such results, I hope the result give him a lift to fight. God bless, Pat
Hello Leslie, I am Pat, I had many similarities to Greggs case, I am seven and a half years past where he is now, and he has past a very important milestone. Just live your lives, do the things you always wanted to do as he is able. Don't ever forget that this second chance can last for a while.This challenge will change how you both look at every day and all around you. When I was at the point where Gregg is I was back to work and getting around pretty well. I was divorced when I went through this so he is fortunate to have you. He is older than I was at the time so he can't be expected to but I hope does as well.Hang in there and focus on your best hopes, god bless you both, Pat
Well Gavin, it is a good thing that people who's liives are upended by cc can get out and live life on a holiday weekend, can't just spend all your time in front of a computer. One of the big lessons dogs teach us is life is too short without health problems so do all you can every day. God bless, Pat
Karen, I was a mechanic for a regional park system which operated a tree sprayer which applied DDT in the 60's, we blew leaves in the fall with this old machine into the nineties, however it is difficult for me to relate that to my cancer. The man who ran it, handled the chemicals and breathed it regularly didn't get cc, I worked in a body shop before that as a floor sweeper and while dumping trash I got paint on my hand so I went to the paint mixing room, there were drums of thinner with little spigots on them, I took a shop rag and wet it with laquer thinner and while I was wiping my hand with it an old bodyman/ Painter named Frank,a great guy with wonderful stories, says to me "don't do that or you'll need half your liver out someday". I listened and avoided contact with thinners thereafter. 30 years later, while laying in a bed at cleveland clinic after surgery to have half my liver out his words came back to me, a crazy coincidence or did old Frank know something about this? Pat
Most the things I read was 5 or more years ago. It may have been old medicine even then. They really dont know much about what causes it. Seven years ago they asked me some crazy questions like "did you ever use intraveineous drugs ?" I don"t like it when a doctor comes at me with a needle never mind turn one on myself, so they don't have a clue. I just hope and pray we get some breakthrough soon to help all the people on this site that so need it.
well Eli, I suppose liver flukes aren't a factor either if no predisposing factors exist? I read this in an american cancer society report, I did not compile that stat, just read it in a report that sounded rather authoritative at the time.My oncologist also stated PSC is a known risk factor.I have tried to educate myself about this disease and most studies I have seen indicate this, Pat