Cholangiocarcinoma: Care Teams and Patient Support
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. Below, in Part 2, the two talk building a care team and finding patient support.
MR: Another thing that we hear from patients so often is, you know, how do you form a relationship with your healthcare team, or how do you communicate most effectively? I don’t know if you have any words of wisdom, but I know a lot of times, it’s really about being very open and honest with your team, and saying if you don’t understand something, or asking if they can explain (something) a little bit differently.
SB: There are a lot of great doctors, but they don’t have the best bedside manner. It’s hard to find that combination. I love my oncologist. He’s got both: he’s very knowledgable, but he’s very empathetic, and he’s very calming to me. He’ll always ask me “how are you feeling?” and it’s like, I don’t know. You tell me. How should I be feeling? Keeping an open dialogue is important. I have friends whose doctors recommend chemo, but they want to try alternative methods, and they’re doing that. Not all doctors agree with that, but you have to do what you feel is best for you. Nowadays, it’s easier to communicate with doctors, if their open to it, via email or if they’re good about calling you back. Email is huge because they’ll respond when they get a chance, and sometimes you get that much quicker than a phone call. Technology has definitely helped with that communication, as well.
MR: When you go to your appointments, do you take someone with you?
SB: Always. My mom, my dad, or my husband. Typically, my mom because she’s retired.
MR: We always say that’s so important. It’s hard to hear, and you need that extra set of ears.
SB: My mom is my note-taker.
MR: I know you have more than one caregiver, which is lovely. Once you leave your appointments, do you always talk through things? Do you make your decisions together, would you say?
SB: Yeah, but I think that my parents and my husband respect, ultimately, my decisions and what I choose to do. They support whatever route I go, but their feedback, opinion, and input is very important to me. I take that into consideration, for sure.
MR: Sometimes, we hear that it can be a difficult situation if the patient and caregiver don’t agree, and I don’t know if you’ve learned anything – maybe on your Facebook group – that you started. I know I’ve read on some forums and in support groups that that’s a difficult thing, because the last thing you need is conflict when you’re fighting a disease, especially with your loved ones. I’m thankful that that’s not your situation.
SB: I’m very thankful.
MR: Have you heard about that from other individuals?
SB: Not off the top of my head, but I know it’s out there that people may not have spouses that are necessarily so supportive. Not necessarily when it comes to their choices of treatment, but I’m sure it’s out there.
MR: That’s another thing, too: spouses sometimes shy away or friends pull back because they just don’t know what to say. That makes it tough.
SB: You know, a lot of people are afraid of saying the wrong thing. And a lot of people do say the wrong thing. Through the last three years, I’ve definitely cut people some slack because I can’t expect anybody to know exactly what to say, unless they’ve been in my shoes. If you say something that might not be so great, I just suggest that they rephrase it or say it differently.
MR: I think people have the best intentions.
SB: Sometimes, you have to remind yourself of that. It can be a little hard.
MR: How is your support system at home? Do you have support?
SB: Yeah, I have amazingly supportive parents and my husband. My mother-in-law is helpful. My friends and co-workers will always say “Whatever you need, we’re here for you.” I’m very fortunate to have the support system that I have. It’s a big one.
MR: That makes all the difference, absolutely. What would you say to individuals that maybe have that type of support system, but it’s difficult to accept. I think, sometimes, if somebody says “What can I do?” or “How can I help?” it’s always a little bit difficult. What words of wisdom would you give?
SB: You do find that that’s the first thing people will say: “Whatever you need, you let me know.” It’s kind of like, well, I don’t know what I need. So, how about you say, I’m going to cook you a meal, and I’ll bring it over. People might think that they don’t want help, or they don’t want to burden anybody, but if somebody is offering to help you, you should take them up on it. If they didn’t truly want to help, they wouldn’t offer. Put your pride aside and just accept it.
MR: Be specific. If they want to bring you a dinner, say Tuesday, so you know that macaroni and cheese is coming on Tuesday evening. I think that’s so important, because people do want to help, but they don’t know what to do. They’ll offer that blanket statement, but I love that advice. Give them something specific. Even if they could help with a load of laundry if you know them well enough.
SB: My mom cleans the house. My mother-in-law would come and play with Austin and do some cleaning too, so that’s appreciated. I don’t want to do that on a normal day.
MR: I hear you. I get it. For all of our listeners, that’s so important not to feel guilty about it. I think caregivers and friends feel helpless, so if this is one way that they can ease the burden for you and your family, then that makes a huge difference to them. They feel like they’re able to actually do things to help.
For individuals who are listening that maybe don’t have that support system, I know you’ve done some wonderful things on own to give people that supportive network. Can you talk a little bit about that?
SB: So, when I was first diagnosed, like I said before, I was so desperate to find somebody like me, who was in this situation. You go on social media like Facebook, and I’m a big Facebook user, and there were some support groups, but it was a mixture of patients and caregivers, and for me, that was just too much. I felt the need to create a Facebook support group solely for patients with cholangiocarcinoma. It’s our safe space. It’s our place to vent, to ask any medical questions, or people ask how to address stuff with their children or how to work while you’re going through this, or life insurance questions. It’s for everything, really. So, for those who don’t have people face-to-face, it’s been huge just to be able to connect behind a computer or a phone.
MR: I think, too, even if you have a wonderful support network like you do, I think sometimes it’s difficult for patients to share some of those really intimate, sometimes dark, sometimes scary things with their loved ones because they don’t want to burden them anymore. Have you found that as well with the Facebook group you started? That people are open to going there?
SB: Yes, because a lot of times, you’re not going to see these people that you’re talking to. A lot of us have been fortunate enough to go to the cholangiocarcinoma conference, so to be able to put a real face to the little picture you see is huge.
MR: I bet you feel like you’ve known each other for years.
MR: The Cholangiocarcinoma Foundation is a wonderful partner of ours along with the GI Cancers Alliance, and I know they do really great work specific to cholangiocarcinoma, which is so important because it is that rare disease. For young adults, especially, I would think that it’s very difficult to find information.
SB: It is. People who are affected by it, typically, are twice my age. They’re in their 60s, and it’s typically men. To find people my age is very hard, but there’s been an influx, I’ve noticed, of people in my group who are my age, or in their 30s. I don’t know if it’s because more people my age are using social media or if it’s just we know more about this cancer and we’re more aware about the diagnosis – being properly diagnosed with it.
MR: That really is such a wonderful service you provide. You’re paying it forward. You’ve said that if you can help one person, and that is just huge. I’m sure the individuals who, at 2 in the morning, can’t sleep, and they’re up reading and learning that there are others out there who can help understand what they’re going through, like nobody else if they hadn’t gone through it.
SB: And it’s worldwide. We have people from the U.K., Australia, Africa, and all over. It’s not just here in the United States. It’s all over.
MR: That is huge. That is wonderful, and congratulations on doing that because you’ll never know how many people you’ve helped around the country and around the world.