Hello from caregiver and question about pain
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Dawn: My husband Tom had a successful left liver resection in June ’09, no chemo no radiation afterwards cause they had clean margins. He initially had drain tubes for 7 1/2 months. 18 months later he started turning yellow which was one of the signs we were to watch for. Turns out he had another tumor in the remaining right bile duct which involved the hepatic artery, therefore in operable.
To make a long story short, his then oncologist told he he had less than 6 months, radiation and chemo would not help. We got 2nd, 3rd and 4th opinoins and thank goodness we did. Tom underwent 28 rounds of radiation, then oral chemo (Xleoda) and later on they installed a port because a radiologist mis read a scan and said the cancer had spread to his groin area. The started him on Gem/Cisplatin and after about 5 rounds did another scan and the ‘mass’ was gone so they discontinued all the chemo.
It’s been just about 2 years since he as told he had less than 6 months. So just goes to show that most doc’s simply do NOT KNOW! The best thing is to take it one day at a time, say a lot of prayers, be positive. Do the things that you can, research, become educated as much as you can on this cancer. Never take no for an answer, instead ask what else can we try! Make sure the doctors have some experience with this type of cancer, or that they have others doctors that they can consult with if necessary. Write down your questions as you think of them (cause else you will forget them). There is no such thing as a dumb question.
Our thoughts and prayers are with you and Theresa.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret and Tom
Thanks for responding and supporting!
Gastro appt was earlier this week followed by an MRI. She got the call this morning from the oncologist that read her scan (not her normal oncologist) but she had a hard time understanding what he was saying…basically what she got out of it was lymph nodes on the pancreas and PETscan to come. She has a message into her oncologist to get more info. I did a quick search online and mostly just saw pancreatic cancer but I know better than to rely too much on that. About a month after her liver resection, a post-op procedure caused pancreatitis, maybe it is related to that? Although the current pain has been pretty bad, she says it is nothing compared to pancreatitis.
Trying not to freak out. Praying for the best, for us and for all of you!
DawnHello Dawn….welcome to our club (the one no one wants to belong to.) As Jim has mentioned scans don’t always tell the true picture. The thickness of the plates prevents detection of anything smaller than 1 cm therefore; symptoms such as elevated blood levels, patient
Dawn, CT scans usually tell the story about possible recurrence of cc. I’m about 2.5 years from a resection and also going through some uncertainty regarding elevated CA 19-9 results over the past several months (3 tests, all over the trigger value), gradually increasing bili numbers over the past six months. I’m not able to have MRI’s, so it’s off to get a PET in a few weeks, and perhaps other tests if the PET is not conclusive. I had a series of CT’s mid-August and all clean and reviewed by some very talented eyes at NY Presbyterian. These are clearly times of high anxiety for patients and their friends/families. Just a nasty byproduct of cc.
I hope Theresa has nothing of great consequence. Good luck to both of you.
Hi Dawn,
Welcome to the site. Sorry that you had to find us all but I am glad that you have joined in with us here after first reading the posts back in 2009. You will get a ton of support and help from all of us here. So please, post away as much as you like and we will do what we can to help you.
Like Lainy says, congratulations for Theresa that she was able to have her surgery and that it went well. Also, great to hear as well that Theresa’s last scan was clean, that is indeed amazing news as you say and I hope that the ultrasound does show that there is nothing to worry about there.
I can’t help you from personal experience regarding your question as my dad never had a resection, but hopefully others will be along soon that can share some experiences with you. Have you looked at our resections board that we have here as that may be of use to you? It can be found here –
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=41
When does Theresa have her app with the gastro doc, and is there anyway that you could see if this could be brought forward? I hope that you will keep coming here and please keep us updated on how Theresa is doing, we are all here for you.
My best wishes to you both,
Gavin
Dear Dawn welcome to our wonderful family of courageous and caring people from all over the world. First I would like to say CONGRATULATIONS on the surgery that Theresa had as Theresa was fortunate enough to have the CC found so quickly. While I cannot help you on your question, I know that others will be joining in soon. Wishing you both the best of luck and please keep us posted.
Hello all,
I’ve been on and off of this site a few times since I learned what cholangiocarcinoma was on Nov 10, 2009 but I think I was too scared to get involved knowing the often poor prognosis of cc.
The reader’s digest version of our story…My partner, Theresa, was 46, extremely healthy and fit, and never sick with anything worse than a common cold. She had stomach pain which led to the diagnosis of a hemangioma in her liver, which is a benign mass of blood cells. It was fairly large and the pain was bad enough to have her decide to have it removed. It should have been a 2-hour laproscopic procedure with at most a one night hospital stay. 1/2 an hour in, the surgeon came out to tell me that he had found a cancerous tumor in her bile duct. She had 30% of her liver removed and was in surgery for over 9 hours with a 5 day hospital stay. The surgeon felt positive about the surgery (thank God!) but she had several complications during surgery recover. In all it was 10 months from surgery till the end of her chemo/radiation treatment.
We are just a couple of months away from the 2-year anniversary of her diagnosis. She just had a “clean” scan (except for something they want to check out with a pelvic ultrasound but think is nothing to worry about). The good scan was amazing news as I am sure many of you can relate to, but she has had severe pain in her liver region for a few weeks. She is now seeing a gastro doc to get to the bottom of this pain. Even with the good scan, I am still terrified that it is cancer again.
Has anyone who had a liver resection experienced pain a year or two out from it? Any thoughts on what it could be? It is slightly swollen and very tender to touch.
Wishing good health, peace and joy to all of you! Thanks for reading…and hopefully responding.
Dawn
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