May 16, 2011 at 8:24 pm #50365
by the way, were you had the surgery done sue?May 16, 2011 at 8:17 pm #50364
by the way, were you had the surgery done sue?May 16, 2011 at 8:13 pm #50363
thank you for your answer sue,in the pathologie of the piece that was resected it says”one adenocarcinoma reach focally the surgical margin”do you think that its a bad news?May 16, 2011 at 12:02 pm #50362scragotsMember
Thanks for your email. I apologize for taking so long in getting back to you. I had the right lobe of my liver and my gallbladder removed in January of 2007 (feel free to check out my early posts). I remain cancer free so far. Having a successful resection is the only true “cure”, altho many people live with this cancer for many years. It sounds like your dad is making all the correct decisions. As far as chemo is concerned, I had none. My doc felt there was nothing for the chemo to attack and suggested not doing it. We will see how that decision affects my future. I may regret that decision some day, but for today, all is well. I am down to one CT scan each year and I do not worry about the cancer returning. At least, not EVERY day. Some days are still difficult. All you can do is literally take it one day at a time. I know that sounds trite, but it’s true. People in this forum are wonderful. Please come here and ask any and all questions.
SueMay 15, 2011 at 6:50 am #50361barbMember
mark, i feel your fright… i found my own tumor in nov of 2002. i have intrahepatic cholangio too. during my first liver surgery, my entire left lobe was removed. i had a recurrence within a few months.
i had my 2nd liver surgery in feb 2004. had another recurrence and a 3rd liver surgery in aug 2006.
post my 2nd surgery i had more than 4 years of various chemos. i had a short ‘break’ from chemo at one point. my last chemo treatment was in may of 2008… WOW that’s shook me a bit just now to realize how long it has been….
i had a VATS procedure in feb (?) 2010 – the lesion was benign.
when i found my tumor, i cried for days. post my diagnosis and learning how serious this disease is, i cried harder.
with my first recurrence, i felt it was even more difficult to cope as the research pointed toward a really bad outcome.
however, i had to focus on the task at hand and then my fight with getting my insurance to pay for treatment kept me very busy.
for me, it took some time to adjust to what i was dealing with and just like everyone else, life’s other challenges did not give me a break.
this site did not exist when i was diagnosed and it is truly a blessing for everyone who has anything to do with this monster. i hope that this support family will help guide you, ease your pain, and help you through a fight of a life time.
i don’t come here often as i am dealing with other family issues, but i will check back on a regular basis for the next week or two in case you have any questions that i might be able to help you with since i am one of the longer survivors.
sending you love and hope,
barb hMay 14, 2011 at 7:28 pm #50360marionsModerator
Mark….As PSC has mentioned many people live with this cancer for many years. And, many people choose not to visit our site especially those people who chose not to focus on this disease. For those experiencing a recurrence often times it can be treated the way a chronic disease is treated. Additionally, we have seen two types of recurrences that of rapid progression and that of the more lazy kind.
In the past very little research has gone into this cancer however, things are changing rapidly. More attention is directed to this disease than ever before and more physicians are treating it than let’s say, five years ago. During the numerous medical conferences attended by our wonderful volunteers including, myself we have noticed a shift in regards to recognition of this disease. And, it continues to move forward.
For the present take joy in the fact that your Dad had a successful resection and that his recovery is moving along smoothly. Adjuvant therapy is hotly debated on this site and I believe amongst physicians also however, lately we have seen a trend toward some sort of treatment post surgery.
But, I am hoping for others to chime in on this and help you along.
Ultimately, you will gather enough information allowing for an educated decision.
Good luck on a speedy recovery for your Dad and please, keep us posted.
All my best wishes,
MarionMay 14, 2011 at 6:21 pm #50359pcl1029Member
Please read under the discussion section-topic under “Help! Post Recent Liver Resection…” to get some ideas about my case study as well as others.
1.It sounds like there may not be enough negative margin for the surgery(R0) for your Dad.
2.Recurrence is very common (50-75%) especially for intrahepatic CC (ICC).
3.There are patients on this web site that are 5,10 and 15 years survivors.
4.Please read my case study for the Gemzar as treatment option and duration.
5.CEA and CA19-9 are not good markers for monitoring ICC.The trend may be of value to some patients but not others(this is if you obtain values for each of them each month like me and make a log,they are still within the normal range).However they are more useful in monitoring extrahepatic CC.
Do not worry about the future of your dad’s outcome;nothing you can really do at this time. He will do fine for now.Come back to this site often and learn from the experiences of others and related knowledge to help you understand this disease;in turn you will make your dad and others down this long and winding journey of cholangiocarcinoma easier and more fruitful in terms of knowledge,hope and treatment outcome.
God blessMay 14, 2011 at 3:30 pm #5138
my dad had left hepatectomie,the doctor said he could take everything he could see.. in the pathologe report is written :”one adenocarcinoma reach focally the surgical margin”is that mean that he have a higher rate of recurance?
Did anyone had left hepatectomie with no recurance more than 5 years,has anyone lived more than 5 years with intrahepatic cholangiocarcinoma after resection,does he need to have Gemzar Chemotherapy as prevention?
i would like to know from you who had this experience if this disease have signs of hope of a total cure in some cases?My dad is going to have his ca19-9 checked in 2 weeks,hope he wil have negative margins:),if not?what does it mean?is he gonna die:((
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