Q&A with Survivor Pam: Connecting, Advocating, Understanding

What do you remember about the moment you were diagnosed?

It was an unbelievable moment when my whole world changed. It was like getting a sucker punch in the gut. My husband and I just stood there in shock. We hear cholangiocarcinoma, knowing carcinoma is cancer, but not fully comprehending what it was. The research began, only to find out that it’s rare and incurable, with a prognosis of 4–5 years. Absolutely terrifying.

What treatments have you undergone since your diagnosis?

I found out I was stage 4 and inoperable. I got a port placed, had the Y-90 radioembolization, had eight rounds (16 treatments) of Gem/Cis with Durva every other time. I later required 10 treatments of radiation when the cancer spread to my gastrohepatic lymph nodes. I finished all the chemo I was allowed and have since been on maintenance immunotherapy.

What is it like living scan to scan?

The uncertainty with every 3-month scan is hard. It’s a very nerve-wracking time, wondering what’s going on inside my body. I’ve had a few scares requiring more imaging and procedures, but thankfully, all turned out to be nothing to be concerned about, not more cancer. Still, the fear along the way is real.

Is it hard to talk about how you’re feeling?

It’s so hard to put all the many feelings into words, but I find that talking about them is therapeutic, and I help others by doing so. That’s been the surprising part of sharing. These feelings are no one can fully comprehend unless they’ve been through them, which is why I volunteer to be a mentor.

Can you share what inspired you to write this reflection?

I spoke with my CholangioConnect mentee, who’s been having a tougher time than I have. She’s on second-line therapy and dealing with side effects. I’m grateful for our connection, but I also feel guilty because my journey has been easier in some ways. Volunteering helps me process that, and it is important for me to be there for others, which in turn helps me.

Have you been able to connect with others who understand your experience?

Yes. I met another CholangioConnect mentor at the CCF Annual Conference while waiting for the elevator. We kept running into each other, and eventually talked. She mentioned guilt, and I grabbed her arm in amazement—finally, someone who understood that feeling. We’ve stayed in touch. When I called her recently, she told me that I could express feelings she had never been able to express. That meant a lot.

Has being involved with CholangioConnect made a difference in your journey?

I could write a book about that. It has changed my life for the better. Being a mentor is one of the biggest blessings in my life! Connecting and sharing with others who truly understand has been life-changing for me. I’ve always said that we can empathize with what another is going through, but we can’t truly know what it’s like unless we go through it ourselves.

While all of our journeys are different, we all share a common bond of understanding. Being a mentor and sharing my story with as many people as will listen has given a purpose to my life. My ‘why’.

What are you thinking about for the future?

I’m considering volunteering at the next CCF Conference—and maybe even speaking. I’d love to share my journey, talk about mentoring, and primarily speak about guilt. I’ve realized I’m not the only one who feels it, and maybe giving it a greater voice could help others.

How has your diagnosis changed your life beyond the medical side?

In many ways, it’s been a gift. A whole new world of opportunities has opened up that never would have been possible without cancer. I’ve become a better version of myself. I’ve discovered what I call my ‘why’, my reason for getting cholangiocarcinoma, to help others. I’m actually grateful for it.

What advice would you give those newly diagnosed with cholangiocarcinoma?

• Connect with the Cholangiocarcinoma Foundation for guidance and valuable resources. This was a lifesaver for me.
• Be your own advocate. No one knows your body like you do. Get a second opinion from a cancer center that specializes in cholangiocarcinoma.
• Research to find out other possible treatments.
• Join the cholangiocarcinoma Facebook groups to connect with others who are going through the same thing.
• Only you can decide what feels right to you, but be open to advice to make an informed decision.