December 13, 2020 at 12:45 pm #100710
Thanks for the post and your thoughts. We are going for the surgery as it is the best chance to beat this thing. My wife has just had a PVE (Portal Vein Embolization) to help grow the good side of the liver, and we will have MRI scan the week after Christmas to see if it has grown sufficiently.
I really hope everything goes well with you and your chemo and you get your shot at surgery too.
All the best.
BeingPositiveDecember 11, 2020 at 9:08 am #100706Triagenurse444@gmail.comParticipant
I would go for the surgery. I too am hoping to have surgery if after first 3 months of chemo tumor shrinks. This is just my opinion but I feel the surgery folled by radiation or corse of chemo or other immune therapy is our best shot.November 20, 2020 at 3:54 pm #100639
Thanks for sharing that with me, much appreciated. My wife was not able to have surgery at first but her recent chemo shrunk the bad stuff sufficiently for us to have a crack at it now. Definitely the right thing to have surgery. I really hope everything goes well for you.
All the best
BeingpositiveNovember 17, 2020 at 7:08 pm #100614Bighorn67Participant
I had resection surgery in June. 10 days in the hospital and 8 weeks recovery afterward. Followed up with Xeloda and 6 weeks of radiation. I don’t know how this will extend my survival chances, but I figure it was worth the risk if it means a few, or several more years. Good luck with your treatment. I wish you the best.November 17, 2020 at 4:10 pm #100613
Hi vtkb and Kristenhall
Thanks both for the replies and helpful messages. I really like how everyone seems to be routing for each other on this website. I really appreciate it.
My wife is going to have to have PVE first in a couple of weeks, then hopefully by early January the left lobe will have grown sufficiently to have the main op to remove the right lobe. I am currently sorting out the logistics for the PVE hence my tardy reply!
I will keep you posted. Thanks again for your support
BeingPositiveNovember 15, 2020 at 4:00 pm #100607KristenhallModerator
I also love your username! Being POSITIVE is such a wonderful way to start each new day and to approach this cancer journey. I wish you all the best with your wife and her treatment plan. You are not alone, we are all here to support you and your family through this time. My father, too, has CC. He was not given the option of surgery. I cannot help with a personal experience- I am sorry. But I know you will find many in this group who will be able to give you their experience.
Thinking of you– stay positive! Hugs and support on this Sunday night.
KristenNovember 11, 2020 at 7:37 pm #100595vtkbParticipant
Good luck in your journey. I can’t stress how important it is to seek a surgeon who has experience with cholangiocarcinoma/liver cancer resections. If you live in a major city, look up the major liver transplant centers and get their surgical opinion (your wife will not be eligible for liver transplant, but those surgeons tend to also do a lot of liver cancer cases). My wife chronicled her journey here (36 yr old with CC update) and our thoughts on surgery after neoadjuvant chemo if you want to check it out. There is also a robust facebook community for patients only that your wife should look into joining when shes ready.November 11, 2020 at 1:42 pm #100594
Thanks for your response and sharing your experience. I am really glad it has worked out so well for you. It is a tough one to beat so well done!
We had a follow up call yesterday with the hospital team and we have be doing further research and thinking. We feel we have to go for surgery as the potential reward is too great to not. We are ironing out some details of the logistics but this is hopefully the start of the upward trajectory.
I will keep you posted.
BeingPositiveNovember 9, 2020 at 6:51 pm #100585bglassModerator
I like your name and it is great to hear your wife is having good results from treatment so far.
There are a lot of patient stories regarding resection you can look at on this website, so you can get a sense of the range of experiences. You can search “resection” on the discussion board landing page. In my own case, I was borderline resectable due to the size of my tumor (about 9+ cm.) but went forward with resection surgery. The surgery was successful but my pathology report indicated the specifics of my tumor left me at a high risk of recurrence. I was sent for both chemo and radiation after surgery, and have been without a recurrence now for five years. I am not considered cured, and still am monitored due to the continuing risk of recurrence, but I am immensely grateful surgery was possible.
The first days after surgery were not easy – a couple days in the ICU, total of a week in the hospital. But then it was a lot easier, with about eight weeks total time recovering at home before getting mostly back to normal activities. Once I was home I was well enough to putter a bit around the house, and be part of family life. Each experience with surgery is different, but I felt well enough, once I was home, to enjoy being away from my job and spend time with my family.
Each patient is different, so it is good that you and your wife are having a thorough discussion with the doctors about the pros and cons of resection surgery, as compared to other treatment options. Ask as many questions as you need to, this will help in making decisions about treatment.
Please stay in touch and send any questions our way.
Regards, MaryNovember 9, 2020 at 2:36 pm #100582
My first post here and I would greatly appreciate some advice/help please.
My wife was diagnosed in June 2020 with intrahepatic cholangiocarcinoma, with one main tumour and four small ones on the right lobe (nothing on the left lobe). The doctors have said her median survival rate is one year but she is in good health otherwise so should hopefully be longer.
She has been on chemo for 5 cycles and the main tumour has shrunk by 60%ish and the four small ones are very small now. We have asked the care team to look at surgery given the positive shrinkage. My wife is only 50 and we have teenage children so it is important we give her survival chances our best shot.
We spoke to a surgeon today who said there is no evidence to support that surgery will cure her or give her better results than not, but they would support our decision if we wished to pursue surgery. Our understanding is that there is about 10% chance she will be fully cured from surgery, but it is her only way to have a chance to be cured. Failing being cured, our thinking is that the surgery to remove the right lobe should still give her significant extra time on top of what she would already have if we did not do the surgery. The main downsides are that there is a risk of death through surgery, 2-3%, and she would have between 6-12 weeks of lost quality time while in recovery before she is back to normal.
I am struggling to find how much “extra time” the surgery may give her if it does not cure her. It is not an exact science but does anyone have a handle of what this might be? It is a shot to nothing maybe, but anyone think it would do more harm than good in these circumstances to have the surgery.
I appreciate this is not a medical forum but I am guessing a lot of people will have been doing their own research and have different experiences of this cancer, so I would really appreciate any help.
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