Doesn’t that sound like something funny or benign? “Hey, stop making me laugh with that cholangiocarcinoma of yours!”.
Mami died of it. It killed her in 10 months. No questions asked. One powerful round of 2 chemo drugs that reduced the tumor to half its size in the first half of the treatment and seemed like doubled in size within a few short weeks after the treatment ended.
Cholangiocarcinoma. Bile duct cancer. About 2,500 cases discovered every year in the US with only 5 to 10% of them being intrahepatic, or inside the liver. The survival rate for people diagnosed with early-stage cholangiocarcinoma is about 30%. However, only about 20% of cholangiocarcinoma is found at an early stage.
All that said, Mami had less than 6% chance of survival. Thing is, we were lucky. I’ve heard of cases when this is found and all they can do is stitch the patient back up and send them home to die. We had 10 months with her. Ten months where she fought as hard as she could. With appointments, radiation, chemo, biliary catheters and way too much time being spent in a hospital room.
But 10 months nonetheless and for that, I am grateful.
February is Cholangiocarcinoma awareness month. Ironic because as many of you know it’s also the anniversary month of my mother’s passing. I wanted to share something of this disease with you.
But there are so many medical terms, so many ins and outs. If you come upon this page looking for information for yourself or a loved one, I don’t want you to focus on the percentages. They are just that: numbers. I believed in Mami’s treatment up to the very end. And I didn’t think those odds applied to us because you can’t let yourself think that way when you’re in the fight. If you are reading this, keep fighting. Equip yourself with knowledge and a great team of doctors and you can beat this thing. I believe that, even after our experiences.
I am grateful that we were able to meet a pair of wonderful doctors that did so much to bring us hope and understanding of this disease.
Dr. Roh at M.D. Anderson Cancer Center. Wow. I only wish we had found you earlier. It is my belief that if we had, things might’ve turned out differently. Thank you for showing compassion during our visits. For holding Mami’s hand. For being genuinely concerned about her and her family. Thank you for caring. After we saw you that first day, Mami had renewed hope. I believe it was the human touch, the holding of the gaze that did that. I will be eternally grateful.
Dr. Maddipatla, I loved that you drew on the exam table paper. That you finally identified specifically what was going on inside of Mami. That your staff was compassionate and caring and always available to me for any questions I might have. Thank you for that call after one of her last stays at the hospital where you wanted to share with me some additional alternatives for treatment and giving us one last bout of hope. We so appreciated you taking the time to look. I can tell you that her previous oncologist never took that kind of time. It meant the world to me that you weren’t condescending. That you spoke to me clearly and as your equal. We were partners in the fight and for that, I have no words bigger than thank you.
We hear about all kinds of different cancers but rarely hear of this one. I’d never heard of it until we were faced with it. This month, I want to do my part in sharing some of the factual information but I also wanted to make it a point to tell you about these great doctors that we found on our journey. They weren’t all like that but man, am I thankful that the last couple were. I think they prepared us for what was to come and more importantly gave Mami comfort that she was getting the best treatment possible.
For more information on cholangiocarcinoma, head on over to the Cholangiocarcinoma Foundation’s Facebook page. For signs and symptoms of this disease, you can check out The Cholangiocarcinoma Foundation as well as Cancer.org.
Don’t forget that if you ever feel ill or don’t feel “right” consult with a doctor. I’m providing this information to bring awareness to this disease. But also to remind you to listen to your body and seek medical attention as needed.
As always, feel free to share your stories here. Do you have experience with this disease?