Hello lostandscared. So sorry about the news. You're probably like me wishing there was something you could have done to find it but how could you have known. There is little to no awareness of this cancer from what I've seen. Either you know it because someone you know has CC or you don't. This site is amazing and I've used it since my mother was diagnosed earlier this year. Definitely has way more information than any other source I've found.

With my Mom she developed uncontrollable blood clotting which is how we found it. So she has numerous clots that still haven't dissolved on top of the cancer. I don't recall her ever complaining about her side or anything else other than having a sensitive stomach and occasional heart burn before then and her mass was the size of a baseball when they discovered it. Now we are just working on chemo and luckily she's responding well. We were told operation was possible but now learned it spread just outside her liver on her diaphragm. Not sure if that surgery will ever be an option but wishing for the best. I'd defiantly get a few opinions about surgery before you go on one opinion or give up on it.

Wishing the best for you and your boyfriend.

Amy

Thank you all for your kind words and encouragement. I look forward to reporting better news next time I post. We refuse to give up. I shared your kind words to Mom and she smiled a bright smile. That was great to see. She still has a fight in her and we aren't giving up.

@Jathy- Being on the opposite side of the spectrum I can see how much strength it takes to not give up and continue to fight. You are an inspiration.

@Pamela, Lainy, PCL1029 thank you for your words of inspiration. Next stop, Sloan :-)

Thank you for this wonderful site. I have spent hours on this site reading and researching all I can since Mom was diagnosed with CC last spring. It’s been a very scary roller coaster (and I stress roller coaster) since she’s been diagnosed. I thank anyone who reads all this but I would like to share my story in hopes that anyone has advice.

My mother started getting uncontrollable blood clots sometime last year which lead us to finding the cancer (since we are told cancer can sometimes cause the blood to thicken). Once confirming it was Cholangiocarcinoma we were referred to an oncologist in April of 2012. They said a few spots lit up which meant it probably spread, stage IV.

Then came Chemo, Cisplatin and Gemzar on Mondays and hydration on Tuesday pretty much since then. After biopsies of the other parts that lid up on a PET came out negative and/or inconclusive and we were told it probably didn’t spread. After one round of chemo the tumor shrunk 60% and chest didn’t light up anymore but two lymph nodes lit up after another round it went from the size of a baseball to a cm and only the main mass lit up.

About a month ago, we were then told operation was possible. I was ecstatic but scared with the clotting something could go wrong but thought, out of only 10% of those with CC can get a chance to remove the cancer completely so we are blessed. I was terrified though thinking, what if she didn’t make it after removing so much of her organs? The surgery sounds so scary but she was determined for a cure.

Two hours into the surgery we got a call that they were wrong, the CC spread to her diaphragm and very thin tumors (one being a cm wide) didn’t come up on the scans but when they opened her up they found them, biopsied them, and confirmed they were malignant. They closed her up and explained if it spread surgery is no longer an option. The surgeon told us now we are talking about Stage IV for sure and all that can be done is chemo for the rest of her life and try to extend it as long as possible. She says my mother is responding so well to chemo she believes that’s the best approach but I recall the oncologist telling us she may eventually stop responding to chemo.

I hear stories of people stage IV that are somehow cured and want to know if I have any hope of her being cancer free at this point or if it’s only a hope of extending her life as long as we can. That’s a depressing and scary concept so I guess I’m here hoping someone experienced something similar and is doing well. I’m taking her to Sloan Kettering next week and hoping there is something they can do to help prolong her life. The tumor is now so small I can’t face thinking it will just grow again. We visited Sloan initially and they thought surgery was probably never an option but recommended the same chemo as the local cancer center recommended which is why we didn’t stay at Sloan since the local place was more convenient for her. I’m wishing we stay at Sloan looking back.  I feel the local oncologist cut her open for nothing. I know the “air spreads cancer” myth is false but with blood clots it was an unnecessary risk. Sorry I continued on so much. Thanks to whoever can share anything you can. I refuse to give up and won’t let Mom give up. Any advice is appreciated.