It's Not You, It's Me: A Second Opinion Story

By Ingrid Laub

I knew I had to tell him I wanted to see other people but I could never find the right time to bring it up. We’d been together for 7 months. We never said we were exclusive but I think we both assumed it. I wasn’t trying to break up with him, I just wanted to explore what other partners had to offer since I didn’t do that exploration before we met.

It was time to tell my oncologist I was seeking a second opinion.

Many patients consult multiple oncologists when they’re first diagnosed with cholangiocarcinoma to find the right fit. Through research and referrals, I found two local doctors I thought it would be a good match for me and decided to work with the first one I met. With a diagnosis of stage IV hilar cholangiocarcinoma, I knew it was important to start treatment as soon as possible and didn’t want to “waste” time comparing oncologists. My doctor has an excellent reputation, is at a top-ranked cancer center, and is located just 30 minutes from my home. Seemed like a home run to me.

As time went on, however, I kept feeling that I wasn’t leaving every stone unturned when it came to potential treatment. My wonderful CCF mentor mentioned how important it is to know what your biomarkers are to see if you’re eligible for any targeted therapies or clinical trials. I was embarrassed that I didn’t really know what she was talking about. It just wasn’t something my doctor discussed with me, and I started realizing I had to take control of my destiny by educating myself. I also didn’t realize that it was possible to get direction from a doctor at a distant location, but have treatment somewhere closer to home, until my mentor told me that’s what she did.

I was nervous about seeking a second opinion because I was worried that my oncologist would be offended and that I would damage our relationship. Everyone I spoke to (including the rest of my current care team) said I should absolutely get a second, or even third, opinion. If I were advising a loved one, I would tell them to get as much information as possible. So why was I prioritizing my doctor’s feelings over my very survival? Or, I should say, my perception of his feelings. When I ask questions wanting to get a better understanding of this disease and my treatment options, he sounds defensive, as if I’m questioning his expertise…but that may just be his communication style. Still, it intimidates me.

Having made the decision to get a second opinion, the question became, with whom? I was already seeing an excellent doctor who was focused on my immediate need for systemic treatment. For my second opinion, I wanted to go to a leading expert who was both a clinician and a researcher, devoted entirely or primarily to cholangiocarcinoma, who could make me aware of any possible additions to my treatment regimen via targeted therapy or clinical trials.

I spoke to my mentor and other patients. I scoured the CCA Facebook groups. And I found some really helpful resources on the CCF website:

• Find a Specialist: an interactive map listing doctors who treat and manage the highest number of patients with cholangiocarcinoma, receive referrals from and work with many other CCA specialists, and publish research and participate in clinical trials for CCA. A word to the wise: it’s a great tool, but shouldn’t be your only source of information. If a doctor is not on this list, it does NOT mean that they aren’t capable or qualified.
• Webinars and Annual Conference Presentation Recordings: watching these presentations can give you an idea of the providers’ area of expertise and communication style.
• Virtual Support Groups: to meet other patients, providers, and caregivers who can share their knowledge and experiences.

Last but definitely not least, a CCF Patient Advocate can give you a free, one-on-one consultation. They listen to your unique story and can guide you with provider recommendations, additional resources, and connections. My conversation with a Patient Advocate helped me recognize my priorities and find providers who could be a good match for me.

I also used ChatGPT to compare providers. If you give it a prompt with the doctors you’re considering and the criteria that are important to you, it can prioritize your options in a clear and concise manner. I’m careful about how I utilize AI. I never ask for a prognosis, which it would be based on previously published information that may not include data on the latest advances. Also, as we all know, every case of CCA is truly unique, and statistics can’t accurately predict actual patient outcomes.

I zeroed in on two providers and made appointments with both. They’re both out of state and therefore not covered by my insurance, so I’m paying out of pocket. (Check with your insurance company to see if you have out-of-network coverage.) One could give me an appointment quickly, and the other is several months out.

The first consultation was amazing. It was supposed to be an in-person appointment but the doctor was sick and offered to switch to Zoom. While I would have appreciated being in the same room, at the end of the day, I felt it actually made little difference that we were on screens. The doctor was clear, empathetic, and informative, and is a staunch proponent of biomarker testing and clinical trials. My oncologist had said I couldn’t have a tissue biopsy due to the risks, but this doctor suggested an approach that my doctor is now moving ahead with. I consider her part of my personal CCA Advisory Council and will continue to check in with her as I continue my journey.

I’m not sure whether I’ll move ahead with the second second opinion (or is that the third opinion?). It’s a much more expensive prospect because that cancer center does all of their own tests rather than reviewing existing lab work and scans and requires the patient to be at their location (no virtual option) for up to 5 business days. It may be worthwhile to go so they’re aware of me for any clinical trials they’re running. Or it may be information overload, adding a level of confusion if their recommendations are different from the ones I already received. I’m going to wait for the results of my biopsy to decide whether this is a good time for me to get another expert opinion.