CC free 2nd resection
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Steve…what did you all decide to do? I chose not to do the chemo…had clear margins…jury was out about effectiveness. It was a hard decision. I am 4 years out! Hope you are all well. Let us know how you are doing.
KathyHi Angela,
Great to see you on here again! I know your energy levels are low, but I hope that apart from that things are good for you right now. And I hope that Juan is well also, please say hi to him as well from me. For those who don’t know, Angela, Juan and I attended a conference here in Dundee a few months ago.
Please don’t worry about getting on here as much as you’d like to, and know that when you are up to it more that we will be here for you.
My best to you and Juan,
Gavin
AngelMar……so glad to hear from you. The BILCAP trial should close by 30/09/2014. The phase III trial data is very much awaited and of great interest not only to the patients, but for the physicians as well. When you have a chance and feel up to it please share a bit more with us.
In the meantime I hope for you to get plenty of rest and for your energy to return real soon.
Hugs,
MarionDear Angel*Mar, thank you so much for the heads up post! So glad for you and wishing you all the best. Your cheering section has begun! When you are able please let us know how you are doing!
sorry for short reply but energy levels very low.
Bilcap trial……………..I considered myself very fortunate to get on the chemo arm of this trial and viewed it as my ally and friend… after having 85% of liver removed for cc
I hope that you can find out more about it …it’s also on the ammf website.
All the very very best.I’m just going through some older posts and found yours. I needed a lift tonight and your story did that for me. Thanks for posting. Julie
Hi Steve,
Thanks for the update and as you say, yessssssss, brilliant news indeed! Thanks for sharing with us all and yes, news and stories like this do indeed give much hope and strength to others so thanks again for sharing here. My fingers are crossed for you and lIz in hoping for the good news to continue for you both and please remember to keep us updated on how Liz gets on with everything.
My best wishes to you both,
Gavin
Steve and Liz
This is fantastic news. I have read that recurrence happens a lot when clean margins are not able to be attained or there are distant lymph nodes involved. I had recurrence after my first resection but my tumor was pressing on the artery so they took the whole tumor but could not go any farther to get a clean margin border. My body did not respond to chemo but I did have good luck with steriotactic radiation for some small tumors.
Hugs
LisaWooHoo Steve and Liz –
Successful resection is wonderful to hear especially with clear margins. You will find many discussion on here about chemo or not to chemo. You could use the Search function on the heading tool bar and probably find most of them.
There are arguments both ways and people have chosen both ways. I know my husband decided to do it all….resection then chemo then finally chemoradiation. Not sure he would chose to do it all over again. His theory is that he wanted to do all he could to keep it from coming back. A second opinion is always a good thing.KrisV
Congratulations Liz and Steve! Am so happy to hear this. I hope she is having a speedy recovery. Regarding chemo, when my dad had his resection 3yrs ago the doctor also said no chemo. In hindsight, I thought perhaps we should have done it. Back then we didn’t because his scan was all clear after the successful resection (clear margins et al). In any case, I think many here would agree that speaking to more oncologists is a good idea.
Steve,
YES! Indeed. I am so happy for you and Liz. From what you have said it sounds like you both have a really great attitude and understanding about all of this. There are no hard and fast rules when it comes to CC. It has a mind of it’s own. For now, enjoy the good news and keep taking things as they come, one day at a time.
Hugs,
DarlaDear Steve YESSSSSSSSSSSSSSS Indeed! Oh, we are s o happy to read this cause we LOVE the good news that brings HOPE to all. Everything sounds vague about recurrence because it IS vague. I feel that when it comes to CC we still know not much and CC has a mind of it’s own, however, your fiancé has the best chance now to beat this monster. To chemo or not is always our biggest decision and perhaps a talk with the ONC would help. In the meantime ENJOY the new life she has been given! Thanks for this awesome update!
I forgot to write… The surgeons said that there was no need for any chemo, any thoughts on this? As much as we don’t want to go through chemo I have read on here very different views as to whether or not this should be undertaken as an extra precaution, again we would appreciate any advise.
Thanks again Steve
Hi all,
I posted on here about two months ago following my fiancée Liz’s liver resection. Following a gallstone scan a 5cm unidentifiable tumor was detected on her liver. 40% of her liver was surgically removed with a 1cm clearance all around the tumor except where it was too close to the bile duct. Much to our horror following biopsy she was diagnosed with CC. She is 36 years old, slim and healthy, we couldn’t believe she has this horrific disease that we had previously never heard of.
It was decided that the best way forward to try and achieve a cure was further surgery, and what the surgeons described as ‘radical’ surgery…. Removing 75% of the liver (once fully regrown), this would be the complete right lobe. Plus removal of the bile duct and to reconstruct this using her intestine, and removal off nearby lymph nodes. She has this surgery 2 weeks ago and is recovering very well, her remaining liver is healthy and allowed such a major operation to be carried out successfully.
An anxious 2 week wait, fearing the worst and yesterday the best news ever when she was told that everything that was removed during surgery was 100% CC free. As you can imagine was are so relieved, we feel so lucky, more than words can explain.
We realise that for now we are very fortunate and we are happy for this, however the dreaded recurrence word is shadowing the good news. The doctors have said that recurrence is approx 50 50… We know we must take each day as it comes and be happy for the now, however I seek some positive words with regards to recurrence. Reading about it seems so vague, I know stats are stats and different for everyone, however why is recurrence so high, if the bile duct is removed I would have thought the risk would be minimal now.
Any advise and knowledge would be much appreciated as always.
For now we feel so lucky and I hope this post will give others hope and the strength to believe that it can be GOOD NEWS….. YYYYYYYEEEEESSSSSSSS :0)
Steve
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