CHOLANGIOCARCINOMA SURVIVOR STORY: A Mother-Daughter Journey of Hope, Faith, and Triumph Part ||

SECTION 2: THE DIAGNOSIS (October 2024)

FOR MOM:
What symptoms did you first notice? When did you know something was wrong?

First, I felt exhausted—just completely fatigued. My husband noticed my eyes were yellow, but I didn’t believe him at first. Then my skin turned yellow, my urine turned dark, and my stools were pale. The itching of my skin was unbearable, especially at night. I’m not a sweet eater normally, but I just wanted so much sugar during this time. I’m not sure that’s correlated to the diagnosis, but I was eating tons of sugar.

Then people started noticing the color in my face. All the makeup in the world couldn’t hide this. People were noticing, and I would get angry at them. I thought I was just dehydrated, so I drank a lot of water, but nothing changed. I was hiding from my kids during this time, but my daughter, who’s a former ICU nurse, planned a pumpkin painting party at my house. When she got there, I opened the door and ran away from her, but she noticed immediately and made me go to the Emergency Department. I felt like a monster. You can’t hide this cancer. Thank God for Costco’s collared shirts because those were the only things I would wear that made me look halfway decent.

What was the process of getting diagnosed like?

It started in the emergency department. They drew a bunch of labs and took me to imaging. One of the doctors told me that there was a possibility that I had bile duct or liver cancer. That same night I got transferred to another hospital where they drew more in-depth labs.

The following day, all my cancer markers came back pointing in the direction of cancer, but no one confirmed it yet.My bilirubin was sky high, so I went in to get stents placed. My daughter, who worked at University of Chicago, immediately had me transferred there a couple of days after finding out. If I was going to beat this cancer, she wanted to make sure I had the best chance, and she knew UCMC would give me that.

What went through your mind when you heard “cholangiocarcinoma”?

I was so scared when I heard the word cancer. You go through stages of grief when you hear that term.I didn’t realize the severity of it at first. I asked no questions. I didn’t Google it. I didn’t even know how to pronounce it until recently. Around eight months into treatment, I was watching a TV show, and it was then that I realized how bad this cancer was. And this was after several procedures, a few hospitalizations, several rounds of chemo and radiation. But I knew I had an amazing chance of survival because my care team was the best—LITERALLY THE BEST. I believed in them. I did everything they told me. If they were going to try to save my life, why wouldn’t I help them and do exactly what they told me to do? Regardless of the outcome, I wanted to put in as much effort and give it everything I had.

Had you ever heard of this cancer before?

Heck no. I’ve heard of all the other cancers—breast, prostate, lung, bone, all of it. Like I said, it wasn’t until recently that I was able to actually pronounce cholangiocarcinoma.

What was the hardest part of those early days?

The diarrhea and the complete loss of control over my body. Temperature dysregulation, no appetite, constant nausea. In my head, I would want one thing to eat, and then when it was in front of me, I couldn’t even look at it. Watching my body deteriorate. Putting clothes on and seeing them hang on me. Looking in the mirror and seeing myself transform into someone I didn’t recognize. But even when I hit rock bottom, I still put my lipstick on to feel a little bit like myself. I went from a woman who felt pretty to this woman I didn’t know. You don’t realize what you have until it’s gone. And this cancer takes everything from you very, very quickly. This is a reality check for us all to embrace what we have. Don’t sweat the small stuff because it’s minor compared to this.

FOR YOU (CAREGIVER):
Where were you when you found out? What do you remember about that moment?

My mom knew something was wrong weeks before we found out. I hadn’t seen her for about a month, so I decided to throw a pumpkin painting party at her house. When she opened thedoor, she turned around quickly and went into the back room where it was dimly lit. I had been an ICU nurse for a really long time, so I was able to tell right away that something was off about her complexion. I had her come into a more well-lit room, and when I saw the yellowing of her skin and eyes, I immediately knew something was wrong. Against her will, my brother and I rushed her to the emergency department. They did a series of tests there. They weren’t able to confirm anything, but they mentioned that they saw what appeared to be a mass on her bile ducts.

From the ED, she was transferred to another hospital where they continued the workup. I had questioned a medication while we were at the hospital, and I was asked to leave by the charge nurse for interfering with patient care. I didn’t want to leave my mom, so I remember sleeping in my car. It was freezing! Around 2 AM, her labs were all coming through on her patient portal. CA 19-9 and CEA—cancer markers—were elevated, and I was certain in that moment it was the word we didn’t want to hear: Cancer.

I didn’t know how I was going to tell my family or how any of us were going to deal with the news. I was devastated and could not stop crying. The way I can explain it is it felt like an out-of-body experience. Almost like a nightmare.

How did you and your mom talk about it together?

Honestly, she was there for me in the moment more than I could be there for her. My mom and I have a very strong relationship. I was so scared to lose her. Neither one of us knew what the future held, so I think we just tried to talk about everything that was on our hearts so that nothing was ever left unsaid We honestly got to know each other better. Our relationship was strengthened during this time. I don’t think either one of us wanted to leave any stone unturned.

What was going through your mind about the future?

How will my life look once she is gone? How could I ever celebrate a holiday without her? How could I ever carry on the traditions that she built? How could I carry her memory on if something were to happen to her? She is the coolest woman I know and has such a zest for life. I wanted to make sure that I carried that on

SECTION 3: MEDICAL DETAILS

FOR MOM:
What type of cholangiocarcinoma was it? (location, stage)

I was diagnosed with perihilar cholangiocarcinoma. We weren’t given a specific stage initially, but it had not spread, and based on the location and stage, I was a possible candidate for transplant. That’s why the transplant team got involved right away. There was an interdisciplinary approach from the first meeting. Because we were given the diagnosis of cholangiocarcinoma at the first hospital, my daughter knew—having worked at University of Chicago—that if I was going to beat this incredibly aggressive cancer, I had to have my care moved there where the best doctors in the country could give me the best chance.

Were there doctors or medical team members who really made a difference?

The entire care team at University of Chicago is worth mentioning. We will forever be indebted to this hospital and the people who took care of not just me, but walked with our family every step of the way. I knew I had a chance when I found out my oncologist was Dr. Joseph Franses, one of the best in the nation for treating bile duct and liver cancers. The nurses and nurse practitioners were exceptional and there with us every step of the way.

When I had my first appointment at the University, I saw Dr. Anjana Pillai, gastroenterologist and transplant hepatologist, was part of the interdisciplinary discussion. My daughter had worked as a Medical ICU nurse for many years at this hospital and took care of many of Dr. Pillai’s patients. She had witnessed how well Dr. Pillai took care of her patients for many years and the lengths she was willing to go to ensure her patients had great outcomes. Not everyone wins this battle, but people have a better chance when they have people like Dr. Pillai and Dr. Franses in their corner.

Down the line, we met the rest of the transplant team—Dr. Barth (my transplant surgeon), Dr. Lamatina (my daughter’s surgeon for liver donation), Dr. Te (hepatologist), and the nurses. They worked so hard to get everything in place. When I was finally approved for transplant, they made it happen before we could even blink. And I’d like to mention that there is a risk of complication with every surgery, but my daughter and I walked out with zero complications. Again, not everyone’s situation will turn out that way, but it’s worth mentioning as a testament to how good they are at what they do.

As a liver donor, my daughter was taken care and had her comprehensive workup done by Dr. Te, who did absolutely everything to ensure her safety. Having worked with her for many years, my daughter knew she was in the best hands.

What treatments did you have between diagnosis and transplant?

Initially, I received FOLFOX because the team couldn’t get my bilirubin down after a couple of ERCPs with stent placement and another procedure where they placed a biliary drain. After a couple more procedures and the addition of another biliary drain, the bilirubin finally came down to a level that was safe to give first-line treatment: gemcitabine, cisplatin, and durvalumab.

I can’t remember exactly how many rounds of chemo I had, but I believe I was going through treatment for about eight months, with a couple of pauses in between because my blood counts had dipped. When I was done with IV chemo, I was started on oral chemo for about a month. During this time, I also had to go through several biliary drain exchanges. I ended up in the hospital a couple of times with infections from these exchanges, one of those times being sepsis.

How did your body respond to treatment?

The tumor was responding well to treatment on every scan. The cancer markers were also coming down consistently.

FOR YOU (CAREGIVER):
How did you navigate the medical system and decisions?

This was all a little bit easier for me having worked at the hospital for many years. I would say that it’s important to build a relationship with your care team. If you are at a reputable institution that treats cholangiocarcinoma, trust your team. Ask all the questions if you don’t understand what is happening. If something isn’t sitting well with you, always seek a second opinion. I did not have to seek a second opinion, but I have heard stories about patients at other hospitals who weren’t given all their options. Believe it or not, not every hospital is in the know, and that’s why I think it’s important to see someone at the University of Chicago or another major medical center when dealing with cholangiocarcinoma or other aggressive, rare cancers.

Also, stay off of ChatGPT when it comes to medical advice. Talk to your doctors.

Were there insurance or financial challenges? How did you handle them?

My parents had great insurance, but there is a great financial team at the University of Chicago who can walk you through this and help explain things.