CancerSurvivorMD®

Essential Elements of Cancer Survivorship Care: Cancer Surveillance

• Brad Buchanan and G [Josie] van Londen • Episode 20

Share episode

In this episode, we sit down with social worker Colleen Dwyer from Cancer Bridges to talk about one of the five key parts of survivorship care: keeping an eye out for cancer coming back, also called cancer surveillance.

We’ll share what surveillance really means, how it changes over time, and the emotions that can come with it. You’ll also hear tips for working with your health care team as your check-ups and tests gradually become less frequent—so you can feel more confident moving forward.

Relevant links for this episode: 

General Links:



Cancer Surveillance 
 

Introduction 
 

[00:00:00]  
 

G van Londen: good morning everybody. thank you for listening to us. There has been a long hiatus. I had a little bit of the flu, which took me months to recover from, but as promised, here is part one of the essential elements of survivorship care. 

today we will be talking about, cancer surveillance. One of the five essential elements of survivorship care, which we listed in our previous podcast episode 

So without further ado, I do think it's worth to reintroduce, the two guests I have today. Brad, you all know he's my co-host and Colleen was here in the last podcast episode, but I'll have them both reintroduce themselves to you. Brad, shall I start with you?  

Brad Buchanan: Sure. I'm [00:01:00] a two time blood cancer survivor, graft versus host disease patient. 

I retired from teaching, when I got super sick and now I facilitate writing, as healing workshops. I'm also the Northern California chapter leader of a group called Man Up to Cancer, which is a support group for men going through cancer themselves or who have a loved one going through cancer. 

G van Londen: Thank you, Brad. Colleen, would you like to introduce yourself?  

Colleen Dwyer Diehl: Sure. Hi everybody. My name is Colleen Dwyer Diehl, and I'm a licensed social worker. I'm also a senior clinical manager at Cancer Bridges nonprofit organization in the Pittsburgh area.  

one of the main focuses is a program that we have created and offered for years now called Living Life Post-Cancer Treatment. It's a nine week program that focuses on exercise, nutrition, medical management, and of course all the emotions related [00:02:00] to that transition from being an active to post-treatment. 

we also offer a monthly support group for those that are post-treatment being a social worker I think is, is just really important piece to the cancer journey. So being able to connect to a social worker, whether it's in the medical facility or in a nonprofit can be very valuable to, people who are walking through this journey to just learn about, resources that might be offered and also that connection to somebody who you can share what you're feeling and, and really help you process and manage the cancer piece. 

So just a little something about it, and it's a little bit more than the intro, Josie, but, um, you know, just, uh, some things that we can talk about.  

G van Londen: Yes. Brad and Colleen are, my friends. As most of you know, I'm a, retired medical oncologist.  

I just wanted to briefly explain that this podcast [00:03:00] does not replace the living life post-cancer treatment workshop It is very, special to attend that in person, because you get many special components as we outlined in the last podcast episode. including An exercise session, and support from your peers. 

there's many hands-on, support that you get. here we wanted to try to reach a larger audience by touching on some of the essentials. so without further ado, let's get going. 

What is cancer surveillance 
 

G van Londen: Today we will talk about Cancer surveillance. What it basically entails is monitoring for a reoccurrence of the cancer you have been diagnosed with. And, um, fear of cancer reocurrence, which goes along with that, is one of the biggest emotional concerns of many cancer survivors. 

as a result, the monitoring for [00:04:00] cancer reoccurrence is very, charged and scary. one of the things I often get asked, and I'm sure Brad and Colleen can give their own comments on this, is when will this fear for recurrence go away? 

my answer is usually a little sobering. it'll never go away, but it will get less over time and you'll find a way, to give it a place. Um, but that's my abbreviated professional answer. Brad and Colleen, if you would like to share your experience both as a social worker and as a cancer survivor with this fear of recurrence. 

Brad's experience with cancer surveillance 
 

Brad Buchanan: Sure. Yeah. Some people, call this, scanxiety, anxiety about what the next scan results are going to hold. I don't really have much experience with that. I was told at the beginning when I was first diagnosed that [00:05:00] my cancer was, slow moving and not malignant. 

we were in surveillance mode, but I was never convinced that was the right thing. I kept, reaching out to other doctors, other blood cancer experts. I emailed dozens of them saying, I have this very weird specialized, unusual form of blood cancer. It was a T-cell lymphoma, that was looking like it was cutaneous lymphoma. 

I didn't entirely believe that it was just cutaneous, even though I had a second opinion that agreed with the first. they both said, we don't know how to treat this. We don't know whether the treatment would do any good. And then when a treatment was suggested, it was denied by my insurance because the agent, they were suggesting was not approved by the FDA for, first line cancer treatment. 

So I was in surveillance, but, [00:06:00] I was not satisfied that was where I should be, I still don't know whether that agent they prescribed called romidepsin, would've done any good in my case. my anxiety was just like, I have blood cancer and I had all these symptoms, like night sweats and I'd lost a ton of weight. 

I was also coughing a lot, but nobody could figure out why I was coughing. But of course it turned out that I was coughing because there was a big tumor in my left lung created by the blood cancer they thought was confined to my skin or just beneath my skin. 

so my surveillance period was at the very beginning of my life as a cancer patient. But they weren't surveilling it carefully. They were just kind of writing it off saying, it's not a big deal. One of the guys I talked to, at an institution I will not name, said, if you wanted to go hiking in Himalayas, that'd be fine. 

And I was like, well, I don't plan on doing [00:07:00] that. But, um, they were not surveilling me, very carefully. They were just waiting for the next symptom to arrive, which it finally did when I started coughing up massive quantities of blood from the tumor that finally burst. 

So I've never really been in a situation where I was deemed to be in stable remission, after six cycles of chemotherapy, they were prepping me for a stem cell transplant. they were pretty sure that chemotherapy was not gonna keep my original blood cancer at bay.  

I was briefly, in a period of, surveillance, but that was leading up to the transplant it turned out that that period was also kind of a fool's paradise because. The cancer was coming back even faster than they had anticipated, and they had to pivot to, an allogeneic transplant, where I would need a donor when the [00:08:00] original plan was for an autologous transplant where I would be my own donor. 

G van Londen: in a way, I haven't been in the classic state of like, monitorings for symptoms, going in for scans, hoping for the best. still not now, Brad, after, after the transplanting, you're in remission. Well, you don't experience that fear.  

Brad Buchanan: No, because I've had another illness to contend with, graft vs host disease. 

G van Londen: Yeah.  
 

Brad Buchanan: And they play a bit of a mind game with you. they say that a little bit of graft versus host disease is a good thing because it's a sign that your new immune system is working and the chances are it will recognize bad old cancer and fight it off in a way that your old immune system didn't manage to do. 

I have to say I am not worried about my original cancer coming back, nor am I worried about my second blood cancer coming back. the second one was a B-cell [00:09:00] lymphoma caused by the Epstein Bar virus. That went haywire in my body after my transplant because my immune system was so compromised. 

I was still on a lot of immune suppressant medications. And so the virus was able to get going and create this second type of blood cancer. But I went for a clinical trial. They said, we have a 66% cure rate. And I was like, did you say cure? I couldn't quite believe it. 

And they said, yeah, that's what we're talking about. we cure two outta three people with this clinical trial, treatment, which I duly went and got. So I am, yeah, I am, you know, I, I, I don't experience that. I don't go in very often. I don't go in for scans. I get the odd blood test. but yeah, since I have a chronic illness, I don't worry about cancer, coming back. 

I just don't, I mean, I've got enough things to worry about, and that's not on my list.  

Multifactorial development process of cancers 
 

Brad Buchanan: I've come to [00:10:00] understand something about cancer is, It's not something that just comes out of the air and strikes you like a lightning bolt. It's something that your body produces on a regular basis. 

But if your immune system is in robust enough shape, it can neutralize it. And my immune system seems to be doing a great job. now that I'm on a lower dose of immune suppression medications, like much, much lower no prednisone, I've ratcheted down my tacrolimus to tiny amounts and I'm contemplating getting off of all of my immune suppressant medications in the next year or so under care of my oncologist, of course. 

So I, yeah, I, I don't really have much of that. I don't have scan anxiety 'cause I don't go in for scans. I don't worry about the results of my blood tests. Um,  

G van Londen: so Brad just, just, uh, um. Expand on a topic that [00:11:00] you mentioned. Um, and you're, you're right. Um, the cancer development, occurs, when there's mistakes at multiple levels. 

And, they happen all the time. one of the problems with cancer development is when your body doesn't have, the appropriate means to fix some of these errors but it's multi factorial, meaning multiple things go wrong at multiple levels that then translate somehow  

In, tumor development, which is different, for everybody.  

Josie's cancer surveillance experience 
 

G van Londen: my case as a cancer survivor was, quite different. as most of you have heard when you listen to my podcast episode, I had multiple recurrences. it wasn't necessarily a, um, if it would recur, but when it would recur. 

that was quite anxiety provoking ' because I had no clue why that was happening until somebody figured out that my immune system is [00:12:00] defective. once I started on my weekly immunoglobulins, I have not had a recurrence since. my health insurance forced me to change my immunoglobulin brand, which made me a little anxious because there  

Brad Buchanan: you go. 
 

G van Londen: I was very well controlled on the one I was on, and so they switched me and I had breakthrough infections so now I'm up on higher dosage on the brand that I'm currently taking. we'll see how good it is against, facilitating and helping my cancer to stay under control, but,  

everybody has a quite different experience. maybe this is a good segway to go to Colleen, because I saw Colleen taking some notes, so she's probably gonna try to tie it all together. 

Colleen's experience with cancer surveillance 
 

Colleen Dwyer Diehl: I was just gonna say that, I think it depends on the individual and you both gave examples of your experiences and they're very different. 

back to [00:13:00] what you had said Josie, about, you're never really sure it ever goes away. That fear, might get lessened over time, but it really depends on your situation your involvement your emotions how you've dealt with the cancer experience and how you're dealing with other things that are impacting your life. 

So there's so many different pieces to this puzzle, but I think it's really important to reach out about it, to figure out how best you can process it to move forward. 'cause I think ultimately that's what you want to do so you can live your life to have the best quality. If that makes  

sense. 

Words Matter 
 

G van Londen: Yes. when you were starting to talk the way you did, what popped in my head is word choice. your cancer doctors, their word choices are very important. 

You can say the same thing in multiple different ways. but some [00:14:00] ways, provoke more anxiety than other ways.  

I wish I could come up with some examples right now.  

Colleen Dwyer Diehl: you mean like if scarier words are used or the way they're, phrased and people take that with them Not really sure how to take that. 

what does that mean? 'cause there's so many unknowns with cancer. it's not like somebody's gonna say, oh, this is exactly what's gonna happen. we don't know what's gonna happen. And a lot of times things happen in ways that we weren't expecting them to. So it can be a bumpy ride. 

G van Londen: Yes. If somebody gives a, false reassurance or a too graphical description of what may happen in the future. what most individuals want and need, is a, realistic, picture of what may happen. Maybe not too graphic and maybe not false reassurance, but in gentle words, a [00:15:00] description of what the future may bring, which will help them cope and give it a place. 

Do I make sense here? 

Colleen Dwyer Diehl: Yes. makes sense to me. 

Personalized, risk-adapted surveillance

G van Londen: So moving on to the next, topic, which is the main topic of this podcast surveillance monitoring of cancer recurrence, which is, different for everybody, even if you have the same tumor type. it's supposed to be personalized  

Even though we're in the 21st century, there's some lack of evidence in terms of how to do that. So there will be some variability for that reason too. Assuming you talk with your neighbors or your friends and you discover that they do scans and you don't, or you do blood work and they don't, and you wonder why is that? 

most of the time, you're doing the right thing for you. But if it's bothering you, I would say 

write it down. And the next time you see your [00:16:00] provider, ask them why that is, so that you feel more empowered, to speak up for yourself, but also to know that you are, doing the right thing for you.  

Surveillance over time 
 

G van Londen: Over time, the amount of monitoring and surveillance will decrease. 

because the chance of the cancer reoccurring, will go down too. but it can be very scary, when you felt reassured, by going to see your providers, having the blood work done, having the scan done, or having the lumbar puncture done or whatever they do to make sure that you're in remission. 

it gave you, reassurance as a sort of pacifier or an umbilical cord, however you want to call it. that you are in good hands. And as this decreases, it might cause you Mixed feelings. You might be happy that it is happening, but you might [00:17:00] also be scared because what if something gets missed? 

sometimes they say less is more. because if you, do scans, you get exposed to radiation. And what does that do to your body? There are copays involved and stress some people use the word scanxiety" or " CT scare, which I like the imaging modality you use picks up little details that then send you down a rabbit hole of needing to dig into that. 

And it turns out to be nothing. But in the meantime, you've gone through days, weeks, months of worrying, what is this? Maybe even have a needle biopsy done to see what it is. and so there's pros and cons to either, but maybe I'll take a break here and give it to Brad and Colleen to expand on what I just shared. 

Brad Buchanan: sure. I should probably put a little context on what I've been saying about my own situation since I am now More than 10 years out from my [00:18:00] original blood cancer diagnosis. I've gotten to the point where I don't even, look very closely at the numbers for all the blood tests they do for me. 

I don't feel obligated to go in as frequently for those blood tests. but for the first, I would say five years maybe, I was getting a lot of blood tests done and they were looking at the numbers pretty carefully, and sometimes you know, something had gone up, the eosinophils or whatnot, were outta whack and the lymphocytes were behaving strangely, and there would be a momentary flurry of communications. 

since I was not the one tasked with interpreting those, I was just the patient. I sort of just hoped for the best I suppose. for the last five years or so, I've been really concentrating on managing my. Chronic illness. I have chronic pain that I've been struggling to manage, through diet and other [00:19:00] means, besides just, painkillers. 

Uh, but yeah, a lot of the people, in the men's, uh, support group that I'm part of MANUP to Cancer, are prostate cancer patients, they have to worry about their PSA numbers. a constant, uh, measure I suppose of, where they're at, with respect to the chance of recurrence. 

I don't know much about prostate cancer. I'm learning more from these guys. those are the numbers they have to, be concerned about. there can be plenty of false alarms and a lot of issues, with the pros and cons of treatment. 

Sometimes the treatment is, worse than the disease in some cases. so they have to weigh a lot of factors. I thought blood cancer was a complicated, and hard to understand, cancer. But prostate cancer also seems to be very complicated.  

G van Londen: Well, that's an interesting [00:20:00] observation because,  

as we learn more about each individual cancer, we're learning that there's so many, subtypes of cancer. oncologists are starting to specialize more and more in. one tumor type just to keep track of all these nuances within each tumor type and the different treatments that they require. 

the board certification for medical oncologists is also starting to shift because it's, impossible for oncologists to memorize and learn all these nuances for all the tumor types. they're evolving towards, allowing you to certify, in only a select few tumor types, which has its own implications. 

Colleen, what would you like to share? Because I can see in your face that you have a lot to share.  

Colleen Dwyer Diehl: Well, I was just gonna go back to what Brad was saying about, being 10 years out and it being a different experience I feel like what you [00:21:00] were saying is kind of what we were talking about at the beginning of the podcast the further you move out, hopefully you're thinking about it less so, Brad, I think you provide some hope for people who are listening hopefully I'll think about this less, or I'll be worried about the numbers less. 

Not to say that you're not still gonna be worried about them. I'm sure that's gonna happen, but maybe it's not so in your face as it feels like when you're first transitioning from being in active to post-treatment. I think that's a really challenging time because you are used to seeing people, at the oncology offices. 

you've made friendships with people that are there each week and then you're not there as often. I've had a lot of people say, it feels like you're not doing anything about it. when you're in active treatment, it feels like, okay, I'm doing it. 

Like I'm doing what I need to be doing to get rid of this. And then that transition to life after is like, I don't know what I'm doing. I'm trying to figure this out. And, it sounds like, Brad, you have some of those different tools, [00:22:00] maybe like through some of the other things that are going on, nutrition and exercise is trying to figure out what meets your needs and what is helpful to you that you can wrap your arms around and feel like you're actively doing to help with that transition. 

So having some of those tools that will help you to move away from this experience being so in front of your face.  

metaphor of the battle 
 

Brad Buchanan: yeah. I think that's a very apt observation, Colleen. one of the metaphors that I've both used and come to mistrust is the metaphor of the battle,  

That you're fighting cancer, you are in, life and death struggle with this thing that wants to kill you. So you're in the thick of the fight when you're in active treatment. I bought into that kind of language because I knew, as soon as my lung tumor burst, that, this cancer is very malignant and I do need to put my war paint on, so to speak. 

[00:23:00] arm myself with, the emotional weapons I needed, like courage. 'cause I was often scared. And, um, just yeah, feel like I needed to show strength and persistence, perseverance, courage and all the rest of it. However, switching from that mode, the sort of fight or flight, or freeze mode to the long term survivorship, the battle metaphor is not helpful any longer. 

It, prolongs to some extent the trauma and the emotional fatigue, of treatment. But it is hard to find something that is helpful, to start thinking of it as a journey or I've, I've started using the Quest metaphor because a journey sounds long and pointless, just like going from point A to point B. 

It's taking forever. But if there's a quest, it's like, I'm seeking this objective. There's something at the end of this, path.  

Gendered aspects of cancer survivorship 
 

Brad Buchanan: it's something that [00:24:00] I've talked to the men, in my support group about in some ways we feel a little bit at a loss once active treatment's over and we're just left to our own devices. 

that's a big reason I think why a lot of these guys have joined Man Up to Cancer. men are notoriously bad about reaching out for support and it might be a gendered aspect to this conversation that we should address too. the whole reason for being of Man Up to Cancer 

is to sort of redefine what the manly thing to do is when you're faced with a serious illness, because all the conventional narratives of masculinity are basically, you must be invulnerable, you must be autonomous, and independent. show no vulnerabilities, and that's plan A, right? 

And then you get cancer, and plan A is out the window. So is there a plan B? a lot of the times for men, there is no plan B [00:25:00] and they get depressed. They. Distract themselves, deny self-medicate. I should include myself in that category. this is why men have worse, outcomes When we get cancer, we often get diagnosed at a later stage. 

We don't get second opinions. We don't follow up, we don't seek support. MANUP to cancer is tackling that issue head on. I don't know if, there's any way of discussing the differences, in the challenges of long-term survivorship, because my sense of that is men might face extra challenges when they're forced out of the fight or flight mode. 

Into the longer term, let's enhance our wellness, mode, which Isn't quite as, energizing, as the, let's go in and kick cancer's butt mode.  

Colleen Dwyer Diehl: point.  
 

Brad Buchanan: You can only live in that for so long.  

Colleen Dwyer Diehl: Mm-hmm 
 

Brad Buchanan: I'd love to hear your thoughts. 

Colleen Dwyer Diehl: [00:26:00] Yeah. I couldn't agree more. I think you came up with some really great points we just recently started a men's group here at Cancer Bridges and we know there's a need, to get more men involved. This group is for those who've had the diagnosis, whether they're in treatment or post-treatment. 

So, um, 'cause at Cancer Bridges, family members and friends can become members as well. the continued connection is really important. And I think your point about, you know, to get in and gets asked while you're in active treatment, there's more people there supporting you. 

Hidden burden of longterm survivorship 
 

Colleen Dwyer Diehl: It's when you move to the post.  

Brad Buchanan: Yeah.  
 

Colleen Dwyer Diehl: People don't realize that you're still in it.  

Brad Buchanan: It's just  
 

Colleen Dwyer Diehl: different type of in it, and it's not maybe as sexy in some ways because it's not, you don't see it and look really like they're doing well and they might be feeling not so great. 

people have expectations that you're gonna get back to being the person that you were before and [00:27:00] so much has changed and you're trying to figure that out. And to do it alone really sucks, you know? it's courage, just like you said. it's courage to reach out. 

It's courage to think that you can't do this by yourself. it's hard to do all of that. So it's really important to have people surrounding you that support you or finding, a group that can help support you, where you can say, oh, I'm not alone.  

there are other people going through this and they understand me. you can hopefully dump it there, you know, if it's virtual or in person. you have a place to say, this is how I feel people understand and I'm not alone. And hopefully now I can leave and feel a little bit better about knowing that. 

Yeah. I think those points are really well taken. yes, I love to be able to find ways to support more people so they have the courage and the opportunity to connect with [00:28:00] others. 

Role of a primary care provider 
 

G van Londen: I'd like to also make a pitch here, which seems to be random, but I think it might fit in here for your primary care doctor, right? 

Because, when you're diagnosed with cancer, that's often the first one who gets put to the side because you're so overwhelmed by seeing your cancer, radiation doctor, your cancer surgeon, your cancer oncologist, and, a primary care doctor is often the one that falls to the side because everybody thinks, well, what can your primary care doctor do? 

But I would argue they can do a lot and they're often not informed of what you're going through. and that's often our fault because when we sign a note, we have to do an extra effort for that note to go to a primary care doctor. if we forget that, then the note of a patient doesn't go to the primary care doctor and they won't be alerted something is happening with their patients. 

So it may look like they're abandoning you, but they may not [00:29:00] even know what you're going through. a primary care doctor usually has known you for an extended period of time. they sense when something is a little off with you, whether it's emotionally or functionally. they can provide that extra layer of support to you and they can also, um. 

Support your cancer doctors. We often put you on medications to pull you through your cancer treatments. like Steroids steroids may increase your glucose levels and a primary care doctor is well suited to help the patient and the cancer doctors with supporting these elevated glucose levels if they should occur. 

If your thyroid goes outta whack, that's something your primary care doctor is very well equipped to support. they can be a very good, team member, to have, available. the other thing I was going to say is, After your treatment is done or it becomes less intense, your [00:30:00] medication list needs to be cleaned up. 

'cause cancer doctors like to add medications, but we're not so very good in stopping those. And your primary care doctor can be very good in helping us clean that up. We call that medication reconciliation. Lastly, what I would like to say is screening. a primary care doctor can help with screening for, diseases, that may occur in anybody, but perhaps, your risk as a cancer survivor is slightly higher, for example, for heart disease or for, poor bone health, like osteoporosis or elevated lipids, cholesterol levels. 

And so, this is a long winded, testimony for how and why primary care physicians should continue to stay involved. Even if you would just send them a message through a patient portal and say, Hey, please review my chart. I've been diagnosed and undergoing treatment for [00:31:00] cancer. I don't know what to ask you, but please review my chart. 

Maybe you will see something that you can help me with. it doesn't have to be an entire in-person visit to further complicate your schedule. Colleen and Brad, is there anything you would like to add?  

Colleen Dwyer Diehl: I was just gonna ask a question. I know you've said this for years and have always been an advocate of, making sure your PCP is aware of the situation. 

And you said that there's something that you have to do to let them know on the oncologist end  

so it really, if that doesn't happen, then the individual has to go in and like when they do their annual visit or whatever, maybe a good idea to call ahead and say, Hey, review my file, or just to let you know this is what's been going on with me, even in the visit, if they don't have a chance to do that ahead of time. 

G van Londen: Yeah. My disclaimer is that things may differ across facilities and time, but, um, I'm pretty sure across the [00:32:00] nation it's not all automatic. And, and so for those listening wherever they are, just a little nudge to, to both let your primary care doctor know what's happening. And yes, maybe ahead of your annual appointments, give them a heads up that your chart will be a little thicker than usual. Um, but, but also if there's something at your institution that can be done to make it automated for, for certain notesto automatically go to the primary care doctors so they stay in the loop, I feel that's very important. 

you're right, Colleen.  

Brad, is there anything you would like to say  

Brad Buchanan: Yeah. for a long time, I completely ignored the primary care doctor, to whom I'd been assigned. because I was dealing with, a specialist for my blood cancer, a specialist for graft results disease, a specialist for my lung problems. 

Um, and there was a high turnover among my primary care doctors. So I would get shuffled [00:33:00] from one to other, and then someone that I'd never met. there was no continuity. Um, that, you know, and this is a general impression, is that doctors are being encouraged to specialize. 

to become experts in one particular discipline and that this good old fashioned GP is rare, and sometimes hard to find, but that's, you know, uh, just, yeah, that is purely anecdotal information. But yeah, I will say that recently I was having unexplained chest pains and, I had been to see my GP or my PCP I suppose I could call them, um, for a checkup. 

And it was helpful, you know, she was able to, order me some tests and, help me get closer to finding out what was going on. So it was good [00:34:00] to have her, on my side when it was hard to get in to see a cardiologist or pulmonologist. 

G van Londen: I'm sorry to hear that, Brad. with primary care doctors, the same thing is happening as within the oncology world, the knowledge is expanding primary care doctors also become a little bit more expertised. we have a shortage of doctors as a whole, and so there's less of us, which makes it harder to find a primary care doctor  

When to call whom when you have a bodily, non-acute concern 
 

G van Londen: but that's leading me to the last main topic in this episode as your, surveillance regimen. your Monitoring for a cancer recurrence decreases over time. cancer survivors can often feel that there's more pressure on them to pay attention to what's happening in their body, as a way to communicate with your doctors that maybe, hey, there's something happening [00:35:00] with their body that could be a recurrence. 

And, um, that's, that can be very complicated because you may not trust your own body anymore. These sensations in your body might be different after the surgery or treatments you've had. Your bodily sensations might be different. You, you don't trust your body because it has grown cancer once. 

And what if it does it Again. And, um, there's also this aspect of what if I'm behaving like the boy who cries wolf and they won't take me seriously anymore and they won't help me anymore. so maybe I should not call my doctor because they will think I'm a cry baby. it puts a lot of pressure on a cancer survivor, as they see the cancer doctors less and less in terms of what to do if something feels off with your body. 

this is the last segment in this episode where we're, going to talk this through [00:36:00] just a tiny bit and also give you some parameters that will hopefully empower you to know what to do if something happens that you don't trust in your body. Shall I go into those parameters? 

Brad and Colleen, do you first wanna say something?  

Colleen Dwyer Diehl: I feel like your explanation of this, Josie, is very helpful, for people I know I've worked with many people who will wait and sit on a feeling that they have and not really sure if they should call. 

or they'll wait till their next appointment to bring it up and then they'll stew about it it's like, well just call, don't wait. If you have a question, they wanna hear from you. And I know in the Living Life Post-Cancer treatment program, we talk about that and how important it is to reach out. 

they still have their eyes on you. They wanna know if there's changes and if you have concerns. I always love your, description of this and the breakdown of how it works.  

G van Londen: Well, because you're a team, I like what you said, they [00:37:00] have your eyes on you. But I I want you to visualize, for the cancer survivors out there listening, you're a team with your cancer provider, but they don't know what you're going through. 

And you may not know how to make sense of it because you haven't gone through all the medical training. And so if you understand it that way, maybe that will feel, more comfortable to you. But it still leaves the issue of who to call when. So what I usually say is if you have, new symptoms like you've never had before or old symptoms that you've had before, but now they're different. 

And whether it's, pain or any type of symptom in your body, I would say go ahead and call somebody. But the disclaimer is that this is for non-acute symptoms. If you have an acute [00:38:00] symptom, if you think your appendix is about to burst or you have a stroke or heart attack, I need you to go to the emergency room. 

this is for non-acute symptoms that are new or, have been there but are different now. if they stay like this for one or two weeks, call somebody you trust. ideally somebody on the cancer site because they may feel more comfortable deciding whether this can be from the cancer or not. 

usually you get an answer that falls somewhere on a spectrum. on one end they may tell you this is not concerning. and to see your primary care doctor on the other end. It might be something that they're taking very seriously by having you come into the office doing some testing and hopefully everything will be clean. 

more commonly, you have symptoms they take seriously but can't diagnose yet. They can't put a label on it yet. And they may treat you symptomatically, maybe for pain. give you pain [00:39:00] medications and then reevaluate a few weeks later. 

And most of the time, my experience is that those symptoms have resolved at that point. If not, they will do further workup. if it resolves spontaneously, it's usually not related to the cancer because it wouldn't go away spontaneously. this is an overview of what to expect if you go down that pathway. hopefully this will make you feel like you're part of a team and, make you feel less like a boy who cries wolf and not Google overnight. does this make sense, Colleen and Brad.  

Brad Buchanan: Yeah. for sure it does. maybe I will fill in some of the blanks about my unexplained chest pains and what, ended up happening with that. 

I had gone in for a bunch of respiratory tests because that was the first thing that I thought is, well, i'm not struggling to breathe, but it kind of hurts [00:40:00] when I breathe deeply. I went in for a bunch of respiratory tests, but they all came back negative. 

So , there was no respiratory issue nor the usual, cold and flu's like symptoms that I usually get when I'm getting sick. no sore throat, no runny nose, just these chest pains. they were not resolving. So I finally called the advice nurse one night and said, you know, I continued to have these, what should I do? 

And she said, well, you should go to the er. I will admit I didn't go in that very minute. I waited till the next morning, and walked myself into the ER and sat there for about eight hours. Getting sort of checked in. they triaged me into non-urgent and finally got some pulmonary function tests run, and they found out that I was having restricted breathing, but they [00:41:00] couldn't exactly tell why. 

part of me was also wondering, is it possible that I have inflamed lymph nodes somewhere? could this be the start of another blood cancer or something like that? that was operating in my mind. But anyway, I finally decided, it was time to just go in and say, here I am. 

I have unexplained chest pain. I want to rule out, that I might be having a heart attack. That was also top of mind.  

G van Londen: I, I think, you sounded like you were surprised that the nurse suggested you go to the emergency room. But chest pain is always a trigger word that makes us think, oh, is this your heart? 

Did you have a blood clot in your lungs? And so that's probably why she said that. But the interesting thing is also you called your nurse. I think that is probably a person you feel comfortable with.  

Brad Buchanan: Well, no, just the general advice nurse. , I had no [00:42:00] personal relationship to her whatsoever. 

Colleen Dwyer Diehl: Mm.  
 

Brad Buchanan: I go to a very big, hospital, where there's always somebody you can reach 24 7.  

G van Londen: yes.  
 

Brad Buchanan: You know, to give you some sort of medical advice. Yes. So they've, I've since had follow-up tests where they've shown that I have a slight heart abnormality, but it's perfectly functional. 

I'm not at high risk for, cardiac event, which is great news.  

Colleen Dwyer Diehl: Mm-hmm.  
 

Brad Buchanan: And eventually the chest pains resolved. So I  

Colleen Dwyer Diehl: was gonna ask if the chest pains you were still having them?  

Brad Buchanan: No, no. I mean, my new little bug that I got on my travels is manifesting itself completely differently. 

which is great. It's nice to just have a cold, you know, that's easy. That's not a big deals. and it's not really affecting my breathing.  

G van Londen: thank you, Brad, for sharing all [00:43:00] these details. We're grateful that you do that.  

Brad Buchanan: Well, it just seemed, it also seemed relevant to the, you know, don't be shy about asking, for more, follow up testing. 

Don't be shy about, alerting your medical team if a new symptom shows up. and I had never had unexplained chest pains before.  

Colleen Dwyer Diehl: Mm-hmm.  
 

Brad Buchanan: Never occurred in my entire life. I was more concerned about a heart issue than I've ever been in the past. But, I did a stress test last week and the results were great. 

I can put that worry to bed for the time being, which is a wonderful feeling. 

G van Londen: Yeah. Thank you Brad. Colleen, would you like to say something?  

Colleen Dwyer Diehl: Well, I'm just thinking, The thing about this is that it does take a lot of courage to say some of these things. I mean, chest pains is one thing, but then if you're experiencing [00:44:00] other side effects, it's sometimes hard to bring those side effects up. 

So it is nice if you do have a relationship and ongoing relationship with your doctors or Josie, like what you were saying earlier, if there's a nurse or somebody that you feel like you can talk to about these things. it's not easy to do and sometimes I know I've talked to people and they're just like, I just don't wanna deal with any of it. 

I just wanna be done with it. I don't wanna have to make another phone call. But hopefully in the long run, it does help you to clear your mind and get to the bottom of whatever it is that's going on.  

G van Londen: Yeah, I think it goes back to personalized again. some people like the anonymity of a very large academic cancer center because every time they call, they may get somebody else on the phone and so they, they may not remember or know that they called before, so they feel less [00:45:00] like the boy cries wolf. 

But the disadvantage is you have to repeat everything again. Um, however, you do get a second opinion from a nurse who looks at it maybe differently than the previous one. what I'm trying to say is everybody's different, whether they prefer a small intimate practice versus, the anonymity of a very large academic practice  

Be one of many and they don't really have that continuity with you. most practices are somewhere in the middle though, where they've, made little clusters of providers with, Teams where they, divide patients up in small teams where they do have some of that continuity of care because, it's all personal. 

you decide how you like to be taken care of. you have a voice and hopefully this podcast allows you to feel empowered to speak up and ask the questions that are important to you. As always, I'll put the [00:46:00] relevant links in the show notes, that both Brad and Colleen mentioned, I wanted to see if Brad and Colleen have any final,  

Closing Remarks 
 

G van Londen: Comments before we close this particular episode?  

Brad Buchanan: No, I wanna thank you both for what you've, brought up and the great conversations. I always learn stuff, during these podcasts, so I appreciate it very much.  

G van Londen: Thank you, Brad.  

Colleen Dwyer Diehl: Same with me. Appreciate the opportunity to be here with both of you. 

Brad, thanks for sharing your experiences and examples of what we're discussing. And Josie, for, the topic and describing all this, it's great to be here with all of you.  

G van Londen: thank you and stay tuned for the next episode where we'll be talking about screening for new cancers.

People on this episode

Head Shot

Josie

Host
Head Shot

Brad Buchanan, PhD, MA

Co-host
Head Shot

Cancer Bridges

Guest
Head Shot

Colleen Dwyer Diehl, LCSW

Guest