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PattiB,
I also had intrahepatic cholangiocarcinoma. It was found incidentally when I was (probably) having a gallbladder attack. I had a 5.5 cm tumor in the right lobe of my liver. I have a fantastic doctor, a liver specialist/oncologist/surgeon who was able to take it out right away. I am now 13 months after resection and am doing well. I go for CT scans every 3 months, with my next one March 11. Then I will start going every 6 months.
I don’t believe I ever had pain or jaundice DIRECTLY RELATED TO THE CHOLANGIO. I was having pain, which sent me to the hospital, but I had a big stone in my gallbladder, which did cause jaundice days later, for a couple days. But if not for the GB attack, my cholangio would not have been found until it was too late.
So, I guess what I am saying is if you do have ICC, there is a good chance that there will not be any pain or jaundice. Please keep looking around for doctors. Get 2nd, 3rd, 4th opinions. It’s important.
I wish you all the best. Know that we are all here, ready to help in any way we can. You are not alone.
Take care,
SueChrissy,
I had surgery (right lobectomy and cholesystectomy) in January of 2007 for cholangiocarcinoma (my story is on here if you really want to read about my experiences). I am now almost 12 months past resection, and still show no signs of cancer return. My doc did not take any lymph nodes during surgery, nor did I have chemo afterwards. I have spent months worrying, expecting the cancer to return at any moment. I feel guilty that I am doing so well while others are not. I hardly even respond on this website anymore for this very reason, altho I read it every day. And I discuss my feelings with my doctor every 3 months when I get my CT scan. But, she has told me and told me (and I am starting to understand) that the cancer may return, but it may not. You cannot go everyday wondering if the shoe will drop tomorrow.
Now, that said, I still worry every day. I imagine facing the news that the cancer is back. I can have myself bawling in one minute flat when I start to worry about it. So, as time goes on, I try to think about it less and less.
You have to try not to worry about what may happen and start being happy for what has happened! Chucks has been given a gift, whether the cancer comes back or not. Please, I know how hard it is. But you have to try, for your sake AND for his. Hopefully it will get easier as time goes on. And until that other shoe drops (and maybe it won’t!!!), enjoy Chucks and the life together that has been gifted to you.
You are both in my thoughts and prayers.
SueKris,
I’m so sorry to hear this news. I am also so sad that you had to go thru it alone. Hopefully your husband will be home soon to comfort you. I will be thinking about you. I wish I could be there so you could cry on MY shoulder.
Take care,
SueHi Kris,
I had two liver biopsies, 3 weeks apart, (the kind like Jeff had…with the big ol’ needle in your gut) when they were trying to diagnose my cancer. The first time, they hadn’t told the radiologist that I even had a tumor, so he tried to work around it and got tissue from the liver only. The second, which is the one that actually diagnosed me, was specifically for the tumor and was done on 12-26-06. Yep, the day after Christmas. My sister-in-law called me back on 12-29-06 to let me know the diagnosis. I am still not sure which of us was more upset.
Anyway, mine were both done in the IR room (Interventional Radiology) and were CT guided. I was not asleep in either, but they did give me the fentanyl/verset combo. It certainly didn’t make it not hurt, but all in all, it really wasn’t that bad.
However, I am not sure that that is what you are talking about. The “percutaneous transhepatic cholangiogram” is something different, I believe and I bet they do put you night-night for that.
I am glad that they are moving forward and getting this checked into. Keep us up to date!
Sue
Carol,
My doc did NOT order any chemo or radiation after my resection. I had clean margins, and she said “there simply isn’t anything left to treat with radiation or chemo”. I am now at 10 months after resection and doing great. I am certainly not telling you to do chemo or not, just passing on what my doc said. It took me about 4 months to really start feeling “good”. All things take time! He’ll get there!
Take care of each other,
SueThank you all for your good wishes! Time is counting down…I’m off to the surgery center in about 15 minutes. Can you believe I am nervous after all I have been thru with this cancer?
Karen,
During another conversation I had with my doctor, she told me she had taken out tumors up to 10 cm. Now, I am NOT saying she could or could no do anything for your husband. IU Med is not just a “cancer treatment center”. It is a learning and teaching hospital that is known around the world as a leader in medical research and treatment. But, I have no doubt that there are other extremely good centers out east…Sloan Kettering (which is where my doc took her residency) is, of course, extremely top rated.
I wish you the best of luck. I am grateful for all your good thoughts and will check back in as soon as I feel up to it. I look forward to feeling better!!!
Thanks,
SueKaren,
Thank you!
I have no idea where you live, but we live in central Indiana. We have the Indiana University Medical Center available to us. It is one of the best cancer treatment centers in the world, with the best physicians. My doc is simply amazing. The day we met, she walked into the exam room and the first words out of her mouth were “I can take out your tumor”.
I do not know what your husbands case involves (how large is the tumor, location of the tumor, etc) but my tumor was found incidentally during a gall bladder attack while on vacation in Florida. I came home and it still took another 4 weeks to get an actual diagnosis. I was referred to IU by a GI doc and was lucky to be given her as a doc. My tumor was 5.7×5.5 cm and was located in my right lobe. 2 weeks later she resected my liver and my gallbladder. It’s been a long road, but I feel so much better than a year ago and actually have hope again.
Please, keep looking into help and solutions. Do not just take the advice of one doctor, get second and third opinions. Keep fighting. And please don’t give up hope.
Sue
I come to this site everyday, if only to feel as if I am amongst people who understand how I feel. My husband loves me, of that I have no doubt. But almost a year after my surgery (can it really be almost a year???), it seems he has “forgotten” that I had cancer and I try not to bring it up when I am with him. He is always sympathetic when I do, and always says he understands how I feel and how it can be at the uppermost of my mind everyday, but he NEVER voluntarily asks me about it or how I am feeling. Of course, maybe that’s a good thing. But it would still be so good to feel like I could just break down and cry and get those hugs that I need.
But, I don’t. I just come here to see how everyone is doing and to feel like someone really does understand. The only person who really asks me how I am feeling is my wonderful step-mom, but I don’t see her very often, or even talk to her that much.
So…thank you for being here. For listening to me when I am scared, upset, frantic AND relieved. Thank goodness for this website…
This next week will be hard. I have my CT scan on Thursday and if it is okay, I will be having knee surgery the next day, and then two weeks later on the other knee. Maybe I can get some sympathy and some help for Christmas, whatcha think??? (And yes, I am almost done with my Christmas shopping…it helps to have an early deadline!!!)
Take care of yourselves, and thanks for listening!!!
SueOh Ted,
I am so sorry. I have read your posts and it has always made me feel better to read about and feel your wonderful relationship together. You have both been blessed and you WILL see each other again. Try to think good thoughts. You are in my prayers and thoughts.
Sue
Kris,
You have been on my mind. Try not to worry, until there’s something to worry about. I know it’s easy to say but I have had my share of scan screw-ups. It does happen, so you just have to believe that for right now. And, of yes, I cried all the way home after the last screw up. We don’t have to be ultra strong all the time. This is our LIFE we are talking about. The mere thought of losing it is enough to send me into weeping fits.
The time will be here before you know it. I am sure your husband will be able to get some reassuring news from your doctor. And thank goodness your doc is meeting you this time. When is your scan reschedule for? I will be thinking about you, crossing my fingers and sending up prayers and wishing you a peaceful mind until then.
Sue
My outstanding liver specialist/surgical oncologist can be found at IU Medical Center in Indianapolis. It is a world renowned teaching hospital offiliated with Indiana University. Her name is Mary Maluccio. You can get her info off of the IU Med Center website. She’s funny, caring and smart as a whip. Of course, you would have to travel to Indy, but I am sure she s available to check over cases from out of state. This woman saved my life. It’s hard to find a doc who will give you all the time you need. She reads my scans immediately afterwards so there is no “waiting on the results”. She has even met me at a DIFFERENT hospital when my scan had to be moved. She may be one in a million.
Good luck!
SueKris,
I have been thinking about you all week. I’m so sorry you have to wait so long to get your results. I don’t understand why it does take so long for some doctors. As I have said before, my doctor will be able to at least look over the results within minutes after my scan. It will still need to go thru radiology, but she has seen enough of these scans to know if there is anything glaringly wrong. Please post the results ASAP when you recieve them.
But try to relax. I hear everything you are saying, and understand so well. Never feel that you are whining. We all need someone to listen to us that truly understands how we are feeling. And I truly understand.
I got your email. I will write you back tomorrow. Take care of yourself. I am thinking about you and crossing my fingers that all is clear and sunny!!!
Sue
Kris,
My doctor has always scheduled CT scans for me since my surgery. I tried to have her schedule an MRI one time, as I also have some chronic kidney failure, and all of the dyes are tough on my kidneys. But, she insisted on the CT instead, so apparently they work fine. I have never had a PET scan but did have many MRI
Lana,
I was diagnosed with intrahepatic cholangiocarcinoma on 12-29-06. I had surgery (right lobectomy and cholecystectomy) on 1-29-07. My tumor was 5.5×5.5cm. My doctor (fabulous, at IU Med Center in Indianapolis) said that she has actually excised tumors around 10cm size. I wish the best for you and your dad. I’m afraid I can’t offer you any advice about how to proceed as my case was “incidentally” found “early”, so I was offered the surgical choice. So far, so good. I have another CT in December and continue to keep my fingers crossed that the surgery continues to work. Many people on this site will have both of you in their prayers, me included.
Sue
