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.
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 Part 1 of 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 sat down with Sarah Bennett, a cholangiocarcinoma survivor to highlight diagnosis and unmet needs within the space. In Part 2, the pair discussed building a care team and finding patient support.
Below, in Part 3, Raymond and Bennett discuss participation in clinical trials.
MR: One of the other things you mentioned was clinical trials that you’ve participated, and I love your perspective as a patient having gone through a trial, and searching for trials; we often hear that that may be a difficult process. But the other thing I would like to get at is how advocacy groups and patients together can kind of dispel some myths about clinical trials. So, I’d love your perspective on your experience.
SB: I think that’s kind of hard because I think I still have some. I’m still skeptical I guess about trials based on my experience. With the one that I went through, it didn’t work for me. It was interesting when I was at the foundation conference and I had the opportunity to speak there; I said I failed the trial and the doctor said you didn’t fail the trial, the trial failed you, which is a great spin on it and it makes sense. My thought is like this is the way medicine is going with these trials, immunotherapy and like targeted therapies. I want to participate so I can help move things forward or help other patients in the future. But it’s hard because I think back to how it didn’t work for me. There’s just a lot of unknown with trials.
MR: Was it difficult for you to find a trial? Did your healthcare provider help you with that? Because you hear about that all the time - how difficult it can be.
SB: So, it can be really difficult if your hospital isn’t doing trials or doesn’t have anything to offer you. I was fortunate enough the first time with my reoccurrence, my doctor, there’s a clinical trial doctor in the same building, the same hospital, who he referred me to. I still got a second opinion just to see what other hospitals had to offer, which is huge. I think everybody should get a second or third opinion. So, I connected that way, but if you don’t want to stick with your hospital and you want to go somewhere else, that’s on you to research, to find someone else.
They’re not going to say, "yeah you should definitely go to Boston or down to Maryland and check it out." I’m going to those places now because we’ve talked about clinical trials again but that’s because my mom and I and my family have done the research of who’s offering what and we’re doing it.
MR: Was it difficult or is it difficult in that process to do that research on your own?
SB: Yeah. All that medical jargon goes right over your head, for me at least.
MR: Absolutely, you know I hear that so often.
SB: There’s clinicaltrials.gov, so you can plug in, I typed in cholangiocarcinoma and it lists the different trials. I don’t know what half of that stuff means. So, I just look up the location and I think, maybe I’ll just give them a call but I may not fit the criteria. It’s overwhelming. It really is.
MR: Do you think, having gone through this process and going through it now, what more could we do as advocates and advocacy organizations? I think there’s got to be more. That’s a big question.
SB: That is a big question!
MR: But I think maybe as a goal, you know the GI Cancers Alliance, for example, maybe we can work toward simplifying or making more sense of a trial finder.
SB: I think that would be great.
MR: I’ve heard that so often from patients. The other thing too is when you’re searching for a trial, you don’t want to waste your time.
SB: No, like right now, I feel a sitting duck. I was just told last week that it’s back in your liver and your lungs, so I met with a clinical trial doctor at my hospital but that’s when my family and I started reaching out to other hospitals. But when you’re doing this research, and you’re waiting for the call back, and you’re waiting for updated genetic testing results, you feel like a sitting duck. I know I have cancer in me so let’s do something.
MR: Let’s get you to where you need to be. It’s a process.
SB: It’s a process.
MR: But I think that would resonate with everybody listening to this. You know, if you know the situation you want to get it taken care of. You want to get it going.
SB: I think a lot of cancer patients are all a little impatient because no one wants to wait around.
MR: Right, and I think, too, that you so often hear that you kind of lose control because you feel it’s a situation where you don’t have that control but I think what you’re doing especially, Sarah, is that you’re taking that control back.
SB: I’ve never thought of it like that, but yeah.
MR: Because you know you’re out there and you’re researching and you’ve got your ducks in a row and you’re like I’m not gonna wait around for whoever. So, I think that’s really admirable and I think our listeners could learn a lot from that. One of the things that I’ve learned too is you know we mention our treatment plan or our survivorship care plan but it’s to really look at different things at the start of your diagnosis. You just don’t know down the road, hopefully you never need it. But if you do, it may be there and you’re like oh yeah I do remember "X Trial" or "X Treatment," whatever that may be and then if you have that in your back pocket you know that is something you could reach for. I think too with our survivorship care plans and treatment plans, it does kind of take a situation, if you have all of your information in one place, it gives you that sense of control. You know, you have those documents.
SB: I do. I have a big binder full of them.
MR: That’s one of the first things we always recommend because then you have it and you don’t have to wait for test results to be sent or they were lost or they weren’t faxed right. Something like that. So, you may be travelling then again for a trial in your future or maybe even here.
SB: I’m hoping to stick with my hospital that I’ve been with for three years. I know them, they know me, I feel very comfortable. But if somebody else can offer me a different chance that might benefit me better, then I’m going to go there.
MR: And I would assume your healthcare team because you seem like you’re very close with them, they would be very supportive of that.
SB: Oh, they would be very supportive of that, of other opinions. I mean, they encouraged it. You know, I have some friends whose doctors are like you don’t need to do that. We have it here. Don’t let a doctor’s ego get in the way of your healthcare. You want a second opinion, third, fourth, you have every right to that. Do it.
MR: Absolutely, because I think the bottom line is, we are kind of the co-captain of the ship and you know if we’re not going to fight for our health and our wellbeing, who is going to?