Cholangiocarcinoma: Early Diagnosis and Unmet Needs

Rare Disease Report is proud to launch a new series called Rare Connections. In Rare Connections, we’ll have medical experts, caregivers, and family members sit down with patients and discuss the hardships and successes that may have been encountered, starting at the time of diagnosis. These inspiring people are here to share their insights based on their own knowledge and experiences.

In this Rare Connections program, Martha Raymond; Founder of the Raymond Foundation, Executive Director of Michael’s Mission, and the Co-Chair of the GI Cancers Alliance meets with Sarah Bennett, a cholangiocarcinoma survivor to highlight the space.

MR: Welcome to CURE Connections. Thank you for joining us today. I am Martha Raymond; Founder of the Raymond Foundation, Executive Director of Michael’s Mission, and the Co-Chair of the GI Cancers Alliance. Cholangiocarcinoma is a rare type of gastrointestinal cancer that forms in the bile ducts.

We are very fortunate today to have with us Sarah Bennett, who was diagnosed at the age of 30 with this rare disease. Welcome to CURE Connections today, Sarah. It’s great to have you.

Because you were diagnosed at such a young age, and you’re still a very young lady, what was it like to be diagnosed so young when all of your other friends and family members are at very different points in their lives?

SB: Being diagnosed at a young age is very overwhelming, especially with a rare type of cancer like cholangiocarcinoma. I was on this mission the first few months to find someone my age who survived it, because when you read the statistics, it doesn’t look great. I thought ‘Oh gosh. This is it. So, let me find someone who survived it, who is my age, so I know that I will be okay.’

So, I went on with that for a while, and then through social media, you can find people and connect with them, but it’s hard because I’m a mother. My son was 18 months when I was diagnosed. Not only did it overwhelm and impact me, but it did for my whole family.

MR: With that, with your son, and how old is he now?

SB: He’s four-and-a-half.

MR: I can’t even imagine. Just being so young, and being a young mom and a new wife, how did you put that all into perspective to be able to be that mom, to be the wife, but to also be a newly diagnosed patient?

SB: The short answer is that I felt like I had no choice. That’s just what you do. You wake up and you’re still a mom. Just because I have cancer, that doesn’t change me. I’m still a mother. I’m still a wife. I’m a daughter and a sister. You name it. That hasn’t changed. I remember when I was a child, hearing my grandmother say that her memories of her mother were that she was always sick and always in bed. I thought, ‘That’s not going to be me.’ I don’t want Austin to grow up remembering me sick and ill and not being able to do stuff. I pushed through it.

MR: When we talk about ‘the new normal’ for cancer patients, I know that sends shock waves through people, and I agree, but for lack of a better term, how was that adjustment to your new normal as a 30-year old with a little boy and a husband?

SB: Part of me wants to say that nothing really changed, but let’s be honest: emotionally and mentally, everything changed because it’s always in the back of your mind. You’re thinking about your future, and if you’re going through treatment, how you’re going to feel, and then your future again. There were points where I was considered to have no evidence of disease, and you don’t just go back to life being the way that it was because you’re always thinking ‘is it going to come back? When will it come back?’ It’s just always there.

MR: I think that some patients will say, you know, that this ‘new normal’ changed them a little bit for the better, or it made them think about things that they maybe hadn’t thought about before. Did you experience any of that?

SB: Not really. Really, when I think about it, though, yeah, because my perspective on a lot of stuff has changed. Why wait until you’re given this terrible diagnosis to do the things you want to do? Just do it.

MR: It’s kind of ‘living in that moment.’

SB: Yeah. It sounds cliché.

MR: I was just going to say, it sounds cliché, and I don’t think a lot of people use it accurately when they say to ‘stop and smell the roses.’ But truly, if you do stop, and you look at those roses, you say ‘my gosh. They’re beautiful,’ et cetera. I think so often, many of us just go through the motions, and we’re not really in that moment. I think that, in my experience, if we look at cancer as more of a chronic disease, we can all learn from that. It’s so important to cherish those things.

SB: You know, it’s true; especially with holidays. When I was first diagnosed, it was in the summertime, and then when I was going through chemo, it was Halloween, Thanksgiving, Christmas, and I was in the moment because all I kept thinking was ‘What if this is my last one?’ Here I am, three years later, but still — every time, it’s like ‘let’s take that family photo!’ I drive everybody nuts, but I need those photos!

MR: Absolutely. You need to make those special memories, and it could be something very small, but absolutely. It’s so important. Have you been able to work during your diagnosis and treatment?

SB: I’ve kind of sporadically been at work on-and-off for three years. The first time took about 10 months; it was two months from surgery, and then about — maybe it was a little longer – but six more months for chemo. Then I went back to work for about a year, and then it came back. I took time off again for a clinical trial and chemo and other stuff. I wasn’t sure how my body would react and how I would feel. I don’t exactly have an easy job, so I wanted to be able to focus on myself and getting better, and I felt working would make it hard to do that.

MR: It’s wonderful that you have that luxury where you don’t have to be at work.

SB: Yeah, and my work was very supportive.

MR: That’s huge. That’s great. That is wonderful. I think one of the things is that you do worry about patients when they feel like they have to be at a 9-to-5 job. Sometimes, coworkers want to be supportive, but they don’t know how to react.

SB: It’s overwhelming.

MR: Right. It’s overwhelming, but it’s great because you have a loving family and you have had that support of coworkers and things like that.

MR: One of the last topics I had wanted to chat about was, given you’re an advocate and you’re a patient, you have a wonderful perspective from many different views. I’m always looking, in the GI cancer space in particular, what gaps we have in education, or what unmet needs our patients are going through. I would just be curious if you felt that, not just in your disease state, but in general, are there gaps in services that you would advocate for us to work more on?

I know you saw the gap with your Facebook group, so you stepped in and created one, which is amazing. I often think that in clinical trials, there’s a gap there to find the right messaging. I think that’s going to have to be a joint effort between our pharmaceutical partners, advocates, and patients, to really look at that and say ‘what is going to be most effective to dispel a lot of the myths that are out there?’ I think that’s what makes patients say ‘you know, this isn’t for me.’ Besides clinical trials, do you also think there’s supportive services that you think we could do more for? Do you think online is the best forum? There’s probably not, especially for your disease type, a lot of in-person support groups, I wouldn’t think.

SB: No, whenever I’ve looked for them, it’s always been GI. It’s very broad, and it’s not specific, but because of the Facebook group, we have held our own get-togethers. I was just at one in Cuca Lake. One of our guys has a house up there. There were people from Canada, and I’m from New Jersey. Someone came from Iowa, and we were in Upstate New York. There’s quite a few people in Ohio, and they plan their own get-togethers. As far as hospitals go…

MR: They’re difficult to find, even I think for some of the larger disease states.

SB: Even at my hospital, it’s not “Cholangiocarcinoma Survivor Support Group,” it’s “GI” or “Liver.” It’s similar, but it’s not liver cancer that I have.

MR: I think that one of the things with the GI Cancer Alliance, one of our goals, while the disease types might be a little bit different, is to really bring that education to patients. There’s a lot more in common that you might expect. Obviously, we’re much stronger together as we’re advocating for these diseases that are a little bit more rare.

SB: I was just thinking that the Cholangiocarcinoma Foundation has just started a mentoring group for patients and caregivers. So, that’s another support specifically for cholangiocarcinoma. You made a good point in that even though there are tons of different cancers, going to a GI support group might be beneficial as well, because even though it’s different cancers, there could be another mother that I could connect with who is having a hard time. Thank you for putting that into perspective and spinning that for me.

MR: For example, her disease state might be pancreatic, but her relationship with her children would probably be very similar. I just think that for all of us, knowing that we’re not alone in this is crucial; especially for young adults. There’s a different set of needs there, for sure.

Sarah, I appreciate your time today. It’s been a great conversation, and we wish you well on your journey. We’re here for you 100%.

For more information, please visit gicancers.org or cholangiocarcinoma.org.