hercules
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Hello Mac, sorry to hear of your fathers difficult time. There are many informative webinars on this site, so much to learn and know about every procedure. The bile duct is a sterile place in the body until your first ERCP , then and thereafter your bile duct is “inoculated ” with bacteria from your stomach and intestine, The skill of hand of the person doing this procedure is everything, there is ( or was 10 years ago ) a 5% chance of pancreatitis resulting from the procedure, and he told me I would be hospitalized with diarrhea and vomiting for a few days. Also my doctor that explained my ERCP also likened the procedure to a video game as he is watching a video monitor overhead of the xray table I am on, he shoots dye ahead of the devise to help see it on monitor, he likened it to feeding a wire through a tree made of a flimsy garden hose in a harsh gusting wind. As you breathe the whole bile duct and liver moves around as it is right under the diaghram muscle. I suggest you get him to a hospital before an infection takes hold. Find the best specialist you can to do the fix.God bless, Pat
Hazel, hello, I am a post re section survivor, and I was told basically the same thing, there is no effective treatment for my cancer, he did offer me the option of getting the chemo if it helped me deal with it mentally, but recommended that I forgo chemo as it will just weaken my bodies defenses. I chose to forgo the treatment, and things have gone well. Don’t panic due to this recommendation, it may work out well. You say her margins were clear, You trusted this doctor to cut you open and do things inside your abdomen, he performed a successful surgery and I am sure he, more than anyone else in the medical field, wants your case to go well.He did this operation and removed all the tissue scans showed. Do not panic or let emotions control you. Things can be fine just as they are, BELIEVE. Living in fear is a part of it. Let’s not kid ourselves, it will always be in the back of your mind from now on, especially before scans and doctor appointments. How you deal with the unknown is key. Try to be positive, and speak and believe positive vibe when you are with your daughter, anxiety is as harmful to the immune system as chemo, so positive support is very important. I wish your daughter the best possible outcome, Pat
gsharp, welcome, I hope you find helpful info here. I believe many cholangiocarcinoma patients begin treatments without 100% confirmed diagnosis of cancer. My surgeon at the Cleveland clinic ordered and reviewed a CT scan and that seemed enough for him to go ahead with an early stage resection which was successful and curative. I wish you the best, Pat
Hello Scott, hope you continue to maintain a positive attitude, and I would like to wish you and your family a warm, happy holiday season, I hope all goes well, Pat
Hello Cait, I am sorry to hear you are dealing with this at such a young age, I hope your treatment goes well, I have no experience to share with that procedure, but I can wish you the best, remain positive, Pat
Matt, I am thankful to hear you are doing well, enjoy life as fully as you can ! Happy thanksgiving to you and yours, and many more, Pat
Rosalie, it is hard for doctors to tell you that you have cancer until they are 100 percent sure you do, there are several conditions that appear similar to cc in scans, and c 19-9 is not always elevated in the presence of this disease. It is frustrating ,not knowing, but something is blocking your bile duct, so that needs to be corrected. I am a Cleveland Clinic patient and my experience was positive. I had my liver resected without being told for sure this is cholangiocarcinoma. So my take was , in spite of minimal symptoms and an unsure diagnosis, the best course of action is to err on the side of caution, this has to be removed, asap, cancer or not, they wont know for sure until they can “play with the pieces” and do pathology tests on the removed tissues. Thankfully my case went well, and I am here to share it with you ten years later. The Cleveland Clinic has treated this successfully, I wish you the best . The whole experience is very intimidating but be strong, face it, you can do this, tell yourself you will beat this. We will be here with you. God bless, Pat
Oh dear Aiste, I am sorry about your dear father, his case was difficult, only because of how his tumor manifested itself in his case. The one thing I remember my surgeon said, and he was a man of few words, so when he did speak, thank god I listened, “The most significant difference about your case is how the tumor manifested itself in your within your bile duct” . In most cases, the tumor forms like rust around the outside of the duct like a sleeve that gets thicker with time, my tumor was like a small mushroom like growth that was attached to the inside of the bile duct and sort of just stayed there rather than grow around and consume the bile duct and the portal vein which runs parallel and right along the bile duct . Your father’s tumor was in a bad location, which involved both lobes of the liver, very hard to beat. Cancer is ugly, random, and sometimes, sloppy. Thank god for sloppy tumors that can be beaten. I do every day, and don’t think I don’t think of your father and many others, I have witnessed many that did not fare so well, I hurt with you every day, Take care and be strong like your father would want you to be, Thank you for your kind words, I hope your son is doing well, take care, Pat
Of course I don’t mind Marion, you may share it however you wish. Oh what a small world it is, as my brother used to work with the husband of the ultrasound tech that discovered my tumor ten years ago. I wrote her an email thanking her for making such a difference in my life. I said I don’t know how you were trained, or how many times you have seen this,It can’t be too many times as this is quite rare, but you called it, with just an ultrasound image. She wrote back to say, “I will always remember that day, I had never seen this before or since.” Well, that kind of makes it an even more incredible call, my doctors were very hesitant to call this cancer, perhaps because of the panic these words can bring. I am just glad someone wrote what it “might” be to get me thinking of how to deal with this potential threat. I told her about these boards, and to go read a few stories about how cc usually treats it’s victims. I was able to thank this woman ten years later, probably the biggest thank you I have ever written. She was a big part of my story of success, and I wanted her to know it. God bless, Pat
Brigitte, you don’t have to wait 3 months to be told so, I will tell you right now, You are one of us, You are a survivor, right now today. You will be one from now on. Don’t ever for a minute think otherwise, You are now living the rest of your life, You must believe that, scans only confirm what you already know. Don’t let this disease hold you hostage, do what you can when you can, and set a goal to move on, go back to your life, it will happen. God bless, Pat
Good news Greg! Hope your success continues many years ! There has been a flurry of good news lately, ride the wave, live your life, god bless,Pat
Deb, great news on mike, good for you both. The first scans seem to be the scariest, and they get less stressful with each one, May your success continue many years, god bless, Pat
Kathy, congrats on 5 years ! I read somewhere that at 5 years medicine considers you ‘cured’, You probably don’t feel like it still getting scans and all, My doctor drew blood and scanned in january and just drew blood for testing in july , one scan a year now and at 7 years they will tell you no more yearly scans, which I don’t miss, they did an MRI the last time I was imaged, they said the MRI gives a more detailed look at the bile duct. At this point, scar tissue in the bile duct is to be monitored as this becomes a bigger factor as you become a longer term survivor. Once again Kathy, big woo hoo to you, take care, Pat
