January 28, 2010 at 8:24 pm #35158gavinModerator
Welcome to the site, although I am sorry that you have to be here. I can’t help you I’m afraid with your specific questions as my dads situation was different to yours. But I just wanted to join the others in welcoming you here. I hope that you will come back often as you will get so much help and support from us all.
My very best wishes to you,
GavinJanuary 28, 2010 at 8:19 pm #35157kayMember
Dad had his resection 10/07 clear margins. No radiation or chemo after because dr’s said it was not neccesary. Almost 2 years later reoccurence in bile duct area 9/09. 12 rounds of chemo and radiation the tumor is gone. Now they are saying there are more in his liver…supposedly grew in 2 months??Conflicting readings as these two spots were called scar tissue or lesions last year??? Not sure who is on first right now. Dad has an appt with a radiologist tomorrow which i will attend. My thoughts were he should have had it back then after surgery to make sure.January 28, 2010 at 8:16 pm #35156ajcarman72Participant
My mom had a successful resection last year at this time with clean margins. Unfortunately spots started showing up a few months after resection. I don’t know if it would have changed where she is at this point or not but I know she does this hindsite thing wondering whether or not she should have done chemo then. Her doctor at the time said, “there’s just no good chemo treatments that I know of for this”. She has a new doctor and is on chemo now.
Given what my mom went through, I would push for chemo or at least get a second or third opinion. Everyone seems to have different experiences and the cancer seems to be very unpredictable. Good luck!January 28, 2010 at 7:53 pm #35155devoncatParticipant
Welcome to the board. I too was Stage 1, clean margens. My doctor actually said that in his 13 years of doing resections, I had the best results he had seen. I had no chemo or radiation after. Unfortunately, I had a reoccurance last year…two years after my original surgery.
Now the good news. Our Sue had her surgery the same time I did and is still 100% cancer free. So there you go. There is hope.
KrisJanuary 28, 2010 at 12:41 pm #35154mlepp0416Participant
Welcome to the site that no one wants to join, myself included. Thanks for posting. My husband Tom’s story is similiar to yours. He was also diagnosed in early 2008 with surgery in June 2008. The did a resection of 3/4 of his liver, left lobe and part of rt lobe and gallbladder. He was never sick and the only indication that something was wrong was elevated liver enzymes. An ERCP showed cancer cells. He also had clean margins. You can read his amazing story under my login name mlepp0416.
Tom has had a re-occurance of a new tumor in the remaining rt biliary tree. In Nov 2009 he started turning juandiced. His new tumor is inoperable because of where the tumor is. His oncologist gave him 6 months, however both Tom and I were not happy with that! We sought out 2nd and 3rd opinoins. Although they agreed with the inoperable part they did not agree with the no chemo and no radiation as a course of action.
Tom underwent radiation – could not do chemo because the liver was blocked and they were unable to stent past the tumor. His bilirubin level climbed to an all time high of 24.7. He had an external drain placed and after about 27 rounds of radiation, his bilirubin level is down to 9.9!
In two weeks they are going to try to stent the liver again and once his bilirubin is back to normal levels he will start chemo.
All his new doctors now say that he SHOULD have had chemo after surgery because he may not be having this problem right now IF he’d had chemo, even with clean margins they feel he should have had it. Like you his team of doctors after the surgery said it was not necessary because of his clean margins.
Personally I would push for the chemo just to be on the safe side, but I am by no means a medical professional. I certainly hope your ERCP goes well and it turns out to be nothing, however with this type cancer one never knows how it will go.
I have read many posts on this site, and traveling with Tom on his CC journey, it seems that there are many twists and turns that can occur, no one seems to be exactly the same, but somehow similiar…
My advice would be also to ASK all the questions you can, get second opinoins and talk to your doctors about chemo as a precaution.
Good luck to you in your journey, Prayers are coming your way from Wisconsin!
Go with God and KEEP KICKIN’ THAT cancer.
MargaretJanuary 28, 2010 at 5:28 am #3139ejhernMember
Hi everyone, I have been watching this site and it has helped me, so I have decided to post my questions. I was diagnosed with bile duct CC in may 2008 surgery June 2008. Dr removed the gallbladder and 40% left lobe of liver said he had a 2 inch clear margin, no chemo or radiation. My scans have been good until the last couple showing spots on the liver, I will be having another ERCP in March I am a little worried my blood work is good but it was good before the surgery. The only reason the cancer was found was my wife wanted me to have my 50 year inspection I had no symptoms the dr felt the lump on my liver. I was over exposed 25 years ago to carcigenic chemicals (PHOTO CHEMICALS) I worked in a photo depart that did not provide protection. The question that I want to ask is if anyone has been diagnosed at stage 1 with resection no chemo no radiation if they are doing good or have had recurrence? I would also like any suggestions or recommendation if they have already been this route. At this time i am just researching and worry about the spots that are showing up now.
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