Essential Elements of Cancersurvivorship Care: Care Coordination

In this final episode of The Essential Elements of Cancer Survivorship Care, we explore care coordination—the complex, often overwhelming task of managing life after cancer. From juggling medical appointments, work, family, and personal healing, to navigating uncertainty and shifting priorities, survivorship can feel like a full-time job.

Dr. Josie van Londen, along with social worker Colleen Dwyer and survivor Brad Buchanan, share practical insights and deeply personal experiences. They discuss the importance of self-compassion, speaking up when overwhelmed, and leaning on both healthcare teams and loved ones for support. Brad’s powerful story highlights the real-world challenges of coordinating care across multiple specialists, navigating conflicting medical decisions, and accessing life-saving treatments.

This episode offers validation, guidance, and encouragement to help you find your own path through the complexities of survivorship—reminding you that you don’t have to do it alone.

Links relevant to this episode:

• https://www.finishinglinepress.com/product/the-birds-of-poverty-ridge-by-brad-buchanan/
• https://www.nmdp.org/patients/transplant-support/life-after-transplant/physical-recovery/graft-versus-host-disease/gvhd-treatment/extracorporeal-photopheresis-ecp

General Links:

• Disclaimers: https://cancersurvivormd.org/disclaimers/
• Brad Buchanan: https://linktr.ee/bradthechimera
• G [Josie] van Londen: https://linktr.ee/cancersurvivormd
• CancerBridges: https://cancerbridges.org/

Transcript

Coordination of Care

[00:00:00]

[00:00:00] Intro

[00:00:00] G van Londen: Hello everybody.

[00:00:02] G van Londen: Welcome to the fifth episode in the series of The Essential Elements of Cancer Survivorship Care. And this is the final episode of and last essential element of care being, care coordination. And that implies your coordination of care with everything that's happening with your care and in your life from resuming catching up, on what you missed at home, what you missed out at work.

[00:00:32] G van Londen: Many people may think, okay, you're back at work so you can catch up on what you missed on, and here's the pile of work you need to do moving forwards and the same at home. Together with everything you need to do to get your aftercare. And some of you might still be in ongoing therapies, perhaps less intense than they were before.

[00:00:52] G van Londen: And so all of that is a lot of balls in the air for you to juggle. That can feel like a rollercoaster, [00:01:00] a period of a lot of uncertainty, Things are changing pretty often, and which you also try to juggle in all of that is the care for yourself, for you to heal. Maybe your finances need, some work.

[00:01:17] G van Londen: your friendships, your social interactions.

[00:01:22] G van Londen: And your legacy building because who knows? How much time we have left. So you may feel like you have to work on building your legacy, which is also putting an extra pressure on you. So there's a lot of for you to coordinate. And this episode we're not going to give you the magical answer because there is really no magical answer. Everybody's situation is different. Everybody finds their own solutions. If there are any. We hope to provide validation, inspiration, and empowerment. 

[00:01:58] G van Londen: Colleen. And [00:02:00] Brad are here with me today, which I forgot to mention when I started recording, but I think all of you loyal listeners are now used to the fact that they're with me here. So Colleen and Brad reminded me about a few things that I should mention and I will have them expand on it,

[00:02:17] Three Take Home Messages

[00:02:17] G van Londen: but maybe the three take home messages for you today.

[00:02:22] G van Londen: Number one is be nice to yourself. Don't be angry with yourself. You didn't do anything to cause this. Every day is a day that you deserve to spend time with yourself. We're often very good to make a planner full of appointments for everybody in your life, but we often don't put ourselves on it.

[00:02:47] G van Londen: Please put yourself on your planner every day, even if it's 5, 10, 30 minutes. Do whatever it is you enjoy doing, just to not hurry [00:03:00] and take in whatever it is that fills your cup, whether it is drinking hot chocolate milk, whether it's looking at the clouds, whether it's painting, going for a run. I don't know what fills your cup, but just do something that makes your soul feel good.

[00:03:18] G van Londen: I guess the second take home message could be if you're overwhelmed, we providers don't always know that 'cause you're very good at hiding it and sometimes you may feel embarrassed or ashamed to tell us that you can't handle it, but then we can't help you. but If you tell us, we can talk with you about prioritizing which appointments are more important than others, which ones can be pushed back. Maybe you can alternate appointments between one doctor and the other. or we can refer you to somebody who can help you.

[00:03:56] G van Londen: And lastly. sometimes you need [00:04:00] help from your loved ones, and that is not easy for either party. It's not easy for the person who needs care to ask and it's also not easy for the caregiver, whoever that is to provide care because it can change the dynamics of the relationship.

[00:04:19] G van Londen: And that is something worth talking about in a professional setting if it's hard to talk about it at home. And now I will give it to Colleen and Brad to see what they would like to add please.

[00:04:35] Social Worker Perspective

[00:04:35] Colleen Dwyer: Thanks Josie. I think I'll just start off by saying, I can remember hearing this several times from people that it feels like having cancer is a full-time job. so it really does take some coordination and you know, it shouldn't be just on you. It's really important to reach out to

[00:04:56] Colleen Dwyer: others, like Josie was saying, to really tell your [00:05:00] medical team if you've got a concern, if you're feeling overwhelmed, is there a way that they can help with separating some of the doctor's appointments or you know, maybe taking a break and not going to all the appointments. The ones of course, that are priority and are really important.

[00:05:14] Colleen Dwyer: But is there a way to just more, maybe step back a bit? Um, but I think the more honest you are, even if there's somebody in the office that you feel most comfortable talking to, or a lot of times the hospitals have patient or nurse navigators that you can speak to or social workers. They can provide some, some support around that.

[00:05:34] Colleen Dwyer: I think sometimes you can be doing really well and then something comes up and There's a situation that happens and it kind of throws you off. And sometimes that will happen. and that's okay. that can be a normal experience for a lot of people.

[00:05:47] Colleen Dwyer: and again, I think it's important to reach out, you know, if you have cancer bridges near you, which is where I'm from, the, a nonprofit that can help, we do provide one-on-one counseling. There's somebody here that can help [00:06:00] with the management of the cancer experience. but also you can bring in friends and family members if you wanna do some counseling with them as well.

[00:06:09] Colleen Dwyer: the couples counseling is something that we also offer, and I think it's, if you're willing and, able to do that, it can really, hopefully help you, whatever your experience might be. so it's really a balancing act. I think it's important to keep that in mind. 

[00:06:26] Colleen Dwyer: Oh, and then the other thing that I was gonna say is that, like Josie said about, you know, every day doing something that's important to you, I think that is huge. I think it's really important to find the things that help you. And things that you enjoy, like for your quality of life, what is fun?

[00:06:46] Colleen Dwyer: what do you like doing? Is it, you know, finding, being with friends? Is it a church group? Is it playing cards? what's your outlets? what can you tap in to help you through this process? And to always keep that in mind [00:07:00] and to do that, like she said, at least once a day, schedule that in and give yourself some grace.

[00:07:05] Colleen Dwyer: Don't be so tough on yourself. And I know that's a lot easier said than done at times, but I think it's really important as you move through this process. So those are just some things to add to what Dr. Josie was just saying.

[00:07:19] Patient Experience

[00:07:19] Brad Buchanan: So maybe I'll weigh in at this point. Um, and as you each were talking, the way I think about the coordination of care in my own medical history is points where there was sort of conflict or tension between, the need to treat my cancer and the need to treat some of the damage that either cancer itself or my post-transplant illness, graft versus host disease, was causing, so the first time this, type of conflict arose, and it was very challenging, for both myself and [00:08:00] my wife at the time, was when my left lung collapsed.

[00:08:04] Brad Buchanan: And at the time we didn't know why I was coughing up so much blood. you know, all we knew was that I had cancer and here I was coughing up a lot of blood. So we went to the ER and said, I, you know, I'm coughing up blood. I know I have lymphoma. Please help. And it took about four days, for them to finally decide, okay, these two facts that I told them upon entering the ER are connected.

[00:08:38] Brad Buchanan: because there was sort of an argument between my two medical, teams. I had had x-rays and a bronchoscopy to try to determine what the opacities in my left lung were, because they really didn't think they had anything to do with my cancer, which they thought was confined to my skin or just beneath the [00:09:00] skin.

[00:09:00] Brad Buchanan: And so when the cancerous tumor burst in the lung and I was coughing up a lot of blood, my medical teams were kind of blaming each other. the oncologists were saying, oh, you, pulmonologists poked a hole in his lung when you did your bronchoscopy. And the pulmonologists were saying, well, look, the guy has cancer.

[00:09:20] Brad Buchanan: Maybe you should think about treating that. Maybe that was the cause of it. But my cancer was so rare and it was manifesting itself in such an unusual way that really nobody, no oncologist thought that my cancer had, metastasized and gotten into my lung. Um, so trying to coordinate that care was kind of impossible because.

[00:09:44] Brad Buchanan: Uh, in the beginning, the medical teams were finger pointing at each other, and there was a real dysfunction in the system. I was in the same research hospital, a world class cancer facility, but my [00:10:00]predicament was that, my cancer had manifested in this very unusual way, had burned a hole into my lung.

[00:10:07] Brad Buchanan: And so they didn't know whether they should treat the cancer, or address the bleeding, and then finally, after three days, they brought me up to the cancer ward and said, okay, we think we have to treat the the cancer now because we've determined that, that there was a tumor in your lung.

[00:10:27] Brad Buchanan: But it took a lot of like waiting around belly aching and complaining and. We, we, we had a nurse navigator who was actually very helpful in helping us understand what was going on and, you know, to sort of decode the language, that we were hearing where the pulmonologists And the oncologists were just kind of like throwing up their hands saying, well, we don't know. we don't think we're the ones that need to solve this problem. so there was no way to [00:11:00] resolve that other than just to finally let them decide what was really going on.

[00:11:05] Brad Buchanan: So there was no care in some ways to coordinate at that point. then later when my lung did collapsed and then I was having trouble breathing, my left lung was kind of, surrounded by this nasty fluid that I was coughing up in pretty large quantities. And then they had to decide at one point, are we gonna

[00:11:28] Brad Buchanan: operate on this fellow, to drain the fluid from around his lung. And the internal medicine people came and examined me and said, no, you're not in good enough shape to operate on. I was too compromised, for them to put that little, you know, I guess they were going to sort of put a little faucet in my back to let the liquid drain out.

[00:11:50] Brad Buchanan: And I remember, you know, the whole thing was incredibly frustrating in part because of just the rarity of the cancer. And the [00:12:00] nurse navigator was great, but there was still just a huge, Fog of confusion about what to do and whether I could tolerate the treatments that I was eventually gonna need.

[00:12:12] Brad Buchanan: so that was kind of an impasse that was slow and difficult to resolve. the second one was when I was diagnosed with my second type of blood cancer after my transplant. There was a very strange moment where I was going in for a treatment, called Photopheresis or ECP, which was supposed to treat my graft versus host disease.

[00:12:36] Brad Buchanan: this was in October of 2016, so the same year that I'd gotten my stem cell transplant. however, on my way in To the Photophoresis treatment. I got a phone call from my oncologist's office saying, we think you have a second type of blood cancer, B-cell lymphoma caused by the Epstein Bar virus.

[00:12:59] Brad Buchanan: [00:13:00] And I was like, well, should I not go in for my photopheresis treatments, and they were like, well, we don't know. Um, but we'll try to ask an oncologist, you know, my, my regular doctor was unavailable, um, so I ended up walking in to this appointment. And I told the people in the ECP, the apheresis nurses like, well, yeah, I'm here for my scheduled treatment, but I now have a new cancer diagnosis and I don't know if this treatment is gonna be counterproductive or not, because the treatment was to try to tamp down the angry T cells that were attacking the rest of my body as part of my graft versus host disease, but maybe it was exactly those same T cells were gonna need to be activated to fight off my second type of blood cancer. And so I just sort of sat and waited, until finally my [00:14:00]oncologist called back and said, yeah, don't bother with that treatment.

[00:14:03] Brad Buchanan: we need to suspend that care and pivot to treating your second type of blood cancer. So there was like sort of real time drama almost, you know, in that morning where we, again, we had to contend with the fact of cancer plus. You know, the question of whether to treat another non-cancer illness that was also very problematic.

[00:14:32] Brad Buchanan: So there were points at which the coordination of my care was extremely challenging. And although my wife at the time handled most of the logistics, I do have, distinct memories of, times where sort of my comorbidities, ganged up on me. And it was kind of impossible to know what the thing to do was, in those moments.

[00:14:55] Brad Buchanan: those were the two most memorable points where coordination of [00:15:00] care was a big problem and. there was nothing I could do except wait for the doctors to figure stuff out.

[00:15:08] Who Takes Ownership

[00:15:08] G van Londen: But you bring up a good point, Brad, no matter where you are in your treatment phase, the acute treatment phase or the more chronic long-term survivorship phase, no matter which part of your journey you're in, sometimes it might be hard not just on the survivor's end to coordinate care but sometimes on the provider's end, it might also be difficult, for them amongst themselves to decide, okay, who takes ownership? Who's going to be the captain of the ship? Who will follow the bone density scan? Who will order the CT scan? some decisions are smaller than other decisions like yours were major, but sometimes it can be very conflicting [00:16:00] and the providers, might not necessarily take ownership.

[00:16:05] Colleen Dwyer: So it's nice if you can get to that point where each provider in your team talk with each other to decide. Okay. Who is gonna take ownership of my care? i'm just agreeing pretty much that I think, 'cause I said earlier, there's a lot of things that come up. Outta the blue Brad, it sounds like you had those experiences. I mean, someone telling you that you had a second cancer when you were going in for another procedure had to be like, just shocking for you.

[00:16:37] Colleen Dwyer: I mean, just to take that in right there in that moment. So if you can find somebody that you know, and I'm sure you were trying to, somebody that can kind of lead. what's happening and your go-to person, you know, I know that's not always easy, but you hope that that's your oncologist. It sounds like [00:17:00] eventually you did get an answer from your oncologist, but then you were sitting there waiting, thinking that you were getting one procedure done and then finding out that you had a second cancer and then finding out you weren't even getting that procedure done.

[00:17:11] Colleen Dwyer: Now it was gonna be something totally different, so I'm sure that it was shocking and then not really knowing what to do about it, but then hearing back from your oncologist that, no, that's not the route we're gonna go. I don't know. I'm hoping that felt okay for you and that at least you, you know, you had that person there supporting you through that.

[00:17:35] Colleen Dwyer: I think that that would be the goal is that you, that the person that is sort of leading the show is, is someone that you trust and that you can get some answers, to some of these difficult situations.

[00:17:47] Brad Buchanan: Yeah. I mean, in that moment though, you know, it wasn't like a life or death situation, unlike in the er, which definitely felt like life or death. It was just like, the [00:18:00] irony of going in for a treatment that might ultimately be more counterproductive, you know? and me having to be the one to ask the question, should I actually go through with this?

[00:18:12] Brad Buchanan: 'cause it seemed wrong to me to be like, let's tamp down the immune system. You know, that's ultimately gonna have to fend off this second type of cancer if at all possible. but, that was just my intuition at work there. operating in real time. Maybe it didn't have that big of an effect, I don't know.

[00:18:32] Brad Buchanan: But, yeah, it was a difficult situation. I was blind at the time as well. and the coordination of care between my eye doctors and my oncologists Was also very challenging where nobody knew, what was going on with my eyes when my corneas got all scratched up right after my transplant.

[00:18:50] Brad Buchanan: I must have seen a dozen ophthalmologists in my hospital room. none of them knew what was going on. And finally [00:19:00] they had to pack me up and, take me physically to the office of the most senior ophthalmologist at uc Davis, who was the only one who had ever seen anything like this before, he was like, oh yeah, this is an ocular graft versus host disease and there's nothing much we can do except manage it for the time being.

[00:19:20] Brad Buchanan: And then they had to wait until I was again, healthy enough to have the eye operations. To restore my vision, which happened about a year and a half later. so there was so much going on. It was kind of, it just felt like insult upon injury, upon insult, upon injury, so to speak. Just one damn thing after another.

[00:19:43] Brad Buchanan: coordinating all of that care was really, really challenging. even once we got the diagnosis of ocular graft vs host disease. but anyway, that period of my life was really challenging and very complicated as [00:20:00]regards, both managing cancer

[00:20:02] Brad Buchanan: and then systemic graft versus host, which was like messing with my gastrointestinal tract and my skin and all the rest of it. And then ocular graft versus host, which blinded me. That was definitely a full-time job for myself and my spouse.

[00:20:16] Colleen Dwyer: Yeah, I think this is a perfect example of coordination of care, you know, care coordinations and how you do it and manage through it because it really sounds like you are going through so much. so many wheels turning. so much happening at one time.

[00:20:33] Colleen Dwyer: That with your body, and to have help from your spouse and as much help as you possibly could get to just get to the next day is what it sounds like though. I'm so glad you are where you are now.

[00:20:47] Coordination of Clinical Trial Enrollment and Participation

[00:20:47] Brad Buchanan: Well, yeah, I've definitely come a long way. and then another aspect of care that had to be coordinated was, getting to the clinical trial that cured the second type of blood cancer. because [00:21:00] initially, my oncologist said, well, it doesn't look great. You probably have about a year to live.

[00:21:04] Brad Buchanan: and then a couple of weeks later he is like, well, actually there's a clinical trial in New York. How fast can you get there? my wife had to, figure that out. get me on a plane. My parents met me in New York. that was nine years ago. almost to the day I went to New York, in early December, 2016.

[00:21:27] Brad Buchanan: Actually I was just in New York

[00:21:28] Brad Buchanan: to do some, publicity for my novel Spies Mate, which is about chess and, espionage and the last days of the Cold War. but almost nine years to the day when I was there for my clinical trial in 2016 when I was blind and very sick. You know, my parents had to meet me at the airport at JFK and take me to our very small little Manhattan, Airbnb, whatever we had at the time, and then walked me to and from my appointments at Sloan Kettering. [00:22:00] So there was a lot of care coordination that my spouse had to do.

[00:22:03] Brad Buchanan: She had to find me a place to live because. Sloan Kettering had a residence for some people, but I was coming at the last minute, you know, for a clinical trial. It was just about finished. Like they, they wrapped it up very shortly after I was treated. and in fact it was unclear, are they still gonna be running this trial, in a few more weeks?

[00:22:26] Brad Buchanan: So I really did need to get there quickly, and we were lucky to be able to afford it. Very lucky to be able to, have my parents just drop everything and come and stay with me for three weeks. And we ended up having a pretty fun time in New York City. but yeah, that was quite the care coordination effort

[00:22:44] Brad Buchanan: my wife had to do, and someone had to drive me to the airport. I flew out of San Francisco, so a friend of mine had to drive me down from Sacramento to San Francisco to get me on a plane, and that was quite an experience, you know, flying blind, I mean [00:23:00] literally flying blind.

[00:23:00] Brad Buchanan: Um. to get this lifesaving treatment. So yeah, that was a very intense period of, care coordination for sure, but it was certainly worth it. I'm glad I did it. And, yeah, some good stories have come out of that whole experience.

[00:23:15] Colleen Dwyer: I bet.

[00:23:16] Conclusion

[00:23:16] G van Londen: Thank you Brad, for having illustrated all these five episodes. this is the end of the fifth episode Care Coordination, which is sort of superseding and summarizing all the previous episodes about Essential Elements of Care because that's what care coordination is about, keeping all the balls in the air to keep your care and life going .

[00:23:43] G van Londen: Hopefully this episode was helpful. We're going to take a little hiatus. then hopefully in the spring of 2026 we will resume with some other special guests that we're gonna keep a surprise for you. But we [00:24:00]hope you found this helpful. And please, as Colleen said, find your own local nonprofit.

[00:24:05] G van Londen: Or better yet, if you're in Pennsylvania, just contact Colleen. Her contact information is in the description box. oh and a shout out to

[00:24:18] G van Londen: Brad who recently has published two books, one is called Spy Mate and tell us about your next poetry book. 

[00:24:27] Brad Buchanan: this is gonna be my fifth published, book of poems and it's called, the Birds of Poverty Ridge. And it's available from Finishing Line Press on their website. Thank you for the plug.

[00:24:41] G van Londen: Thank you all.

[00:24:42] Brad Buchanan: Thanks, Josie. 

[00:24:44] Colleen Dwyer: Thank you both.