Every dot is a person

This episode takes a powerful and human-centered look at the stories behind cancer data. While researchers often work with spreadsheets full of numbers and categories, each data point represents a real person with a complex, emotional journey.

The episode features intimate conversations with three cancer survivors:

• Johanna Kenney, who was diagnosed with breast cancer at an unusually young age
• Christina Sisti, whose cancer journey intertwined with her husband's own battle against head and neck cancer
• Grace Waller, who fought osteosarcoma as a teenager and participated in a clinical trial that later became standard treatment

Through their stories, listeners learn how cancer statistics and medical records often fail to capture the full depth of the patient experience - from the shock of diagnosis, through the challenges of treatment, to the ongoing reality of life after being declared cancer-free. The episode also explores the vital role of patient advocates in helping bridge the gap between researchers and the people they're ultimately trying to help.

It's a moving reminder that behind every clinical trial, every survival rate, and every data point is a human being with hopes, fears, and a story that deserves to be heard.

Transcript

0:00: This episode features patients discussing details about their cancer treatments and may include graphic descriptions of medical experiences. 
 0:15: You're listening to Cracking the Cancer Code, a podcast series about the researchers who use data to fight cancer. 
 0:21: I'm Doctor Carrie Wright, a senior staff scientist at the Fred Hutchinson Cancer Center. 
 0:25: I lead content development for the ITCR Training Network, a collaborative effort funded by the National Cancer Institute of. 
 0:33: Researchers around the United States aimed at supporting cancer informatics and data science training. 
 0:37: And I'm Candace Savonen. 
 0:39: I'm a data scientist at Fred Hutchinson Cancer Center. 
 0:41: I'm the tech lead of the ITCR Training Network. 
 0:43: We work closely with a variety of dedicated cancer researchers on the forefront of cancer informatics shaping the field's future. 
 0:52: When you work in informatics, you spend a lot of time thinking about data. 
 0:57: But sometimes amongst all this data cleaning and data calculation and minutia, you can forget about the people who this data represents, the people behind the data behind the spreadsheet. 
 1:10: By necessity, data sets reduce patient experiences into numbers, categories, and sometimes simple yes-no answers. 
 1:18: So Carrie, why is it necessary that data sets reduce The patient experience down like this. 
 1:24: Well, ultimately, we're often doing statistical analysis and we have to have something that we can put into a mathematical model. 
 1:31: And so we need numbers to do that. 
 1:34: Yeah, and certainly if you remember way back earlier in our series, we talked a bit to David Anauer about how clinical notes and more complicated forms of data also can get incorporated. 
 1:45: But today we're going to talk about how even amongst all of this data we have collected, We spent time talking to 3 cancer survivors, and even amongst all that data, there's still a lived experience that is not always coming through by just looking at the data, and we think it's important to kind of re-enter our discussion about cancer research by talking to patients and survivors of cancer. 
 2:12: Right, because ultimately what we're trying to do is help people have a better experience getting treatment and hopefully surviving cancer. 
 2:21: And thriving afterwards, if possible. 
 2:23: So, Candice, you used to work in a pathologist's office. 
 2:27: I was wondering if you could talk about some of the sorts of data that you would record. 
 2:31: Yeah, actually, one of my first research jobs, I was working where I would collect brain samples from individuals who had deceased within the last 24 or 48 hours. 
 2:43: And when you go to collect brain samples from these individuals, I just remember having a very specific experience of being like, I want to respect this person's life and like kind of everything that they went through and I just thought it was like so kind of impactful to be like holding their brain in my hands because, you know, each of us as we're going through our lives is thinking all these thoughts and then you kind of have that in a physical experience that then is translated into a data one. 
 3:13: So Candice, how did you decide whether you would code something as a cat. 
 3:17: Category of yes or no or maybe even recode something into a numeric value. 
 3:23: Right. 
 3:24: So this was actually drug addiction research. 
 3:26: We wanted to know how the physiology of the brain changes, but basically that meant that we had to categorize people as users of drugs or not users of drugs. 
 3:34: And as you can imagine, even that kind of category could get very fuzzy. 
 3:38: So we obviously would have criteria for each of our studies and we would end up reducing this information. 
 3:44: But even then, you know, you'd be like, well, the toxicology report can only show in the last 48 hours. 
 3:50: So the point is, is that there is so much that happens in our lives. 
 3:55: Yeah, we have to kind of reduce and categorize and that can feel a little bit cold. 
 3:59: I think it's really easy to lose our humanness sometimes we're in research, but at the end of the day, the goal here is to help humans and to mitigate the awful journey. 
 4:10: That is cancer. 
 4:12: I think, like I said, just re-entering, this is for these people is just so critical and important. 
 4:18: So the reason that we really need to do this is because even though there's all of these nuances and differences across different personal experiences, we're trying to find overall patterns that we can use to learn something that might help us in terms of preventing cancer or helping people have better treatment. 
 4:36: We need to Come up with limited sets of information to try to fit into that mathematical model. 
 4:43: But the actual lived experiences of individuals is just so much more than what the numbers can say. 
 4:50: So for this episode, we wanted to talk about the stories behind the common data points that we use for cancer informatics. 
 4:57: In most biomedical studies, the first bits of information researchers collect are basic facts about Each patient. 
 5:03: They can include demographic information like age, where someone lives, what they do for a living, if they smoke, and other background details. 
 5:12: Researchers are interested in these details so they can get an idea of what types of characteristics can be used to describe the patient population as a whole. 
 5:19: The hope is that these details can help researchers identify risk factors. 
 5:24: Again, we've talked about risk factors before, but there's something that is associated With a person's likelihood of getting cancer. 
 5:31: So it doesn't mean that it causes cancer, but it just means that if this risk factor is existing, the person's chances of getting cancer are more high. 
 5:42: One demographic detailed cancer researchers are particularly interested in is age. 
 5:46: The risk of developing almost all types of cancer increases as the person gets older, making age by far the biggest risk factor. 
 5:54: Among the 10 most Common types of cancer, according to one source that we found, the average age of diagnosis is 67 years old. 
 6:02: Because of this, most of our research about cancer has been done using patients near this age. 
 6:06: People who develop cancers at unusually young ages are considered early onset. 
 6:11: This label can be a bit disorienting for patients. 
 6:14: Joe Kenny told us what being an early onset cancer patient meant for her diagnosis and treatment. 
 6:26: I am a 10 year survivor for breast cancer. 
 6:30: I am Or an adolescent young adult, as far as my grouping for cancer, which when you're a breast cancer person and you're a young adult, that kind of leaves you in the lurch with a lot of things. 
 6:43: But I had just turned 40 when I noticed that I had a, a nipple inversion, and I kind of just ignored that. 
 6:51: I was like, that's just kind of weird, but like, yeah, whatever. 
 6:55: You know, really didn't think anything much of. 
 6:57: it. 
 6:57: And then my next appointment with my general practitioner, I can't printed it out, and she sent me directly upstairs to go get a mammogram and ultrasound. 
 7:08: And again, I refused the C word in my head, you know, I'm like, yeah, probably a fibroid, maybe a cyst, something weird with the ultrasound tech kept going and going over one specific area, and then Left the room and then that's kind of when the fears started coming in. 
 7:29: So the radiologist basically said, I'm pretty sure this is cancer. 
 7:32: We're gonna set you up for a biopsy. 
 7:34: But we're full. 
 7:35: We don't have any, any place to put you right now, so go home and we'll call you. 
 7:39: So that was a fun drive home, trying not to fall apart and then not wanting to call anybody because I wanted to like wait for That phone call cause I didn't know what to tell anybody. 
 7:50: So I finally did get a call. 
 7:52: They were able to kind of get me in later that week for that biopsy, at which point I did call my parents who, at the time I was living in San Antonio, Texas, they were in Austin. 
 8:03: It was about an hour and a half drive. 
 8:05: And I pretty much just fell apart on the phone. 
 8:09: I had kept myself together for a couple of hours there after. 
 8:13: Basically somebody telling me, we think you have cancer. 
 8:16: And then, you know, and so my parents basically got in the car, drove down. 
 8:22: And my mother was with me when I went and got the biopsy. 
 8:25: One of the things I very much remember is when we went in, everybody thought that I was there for my mother, not the other way around. 
 8:32: And that was kind of one of the first aha moments for me that that that this might be a little interesting. 
 8:39: And we decided as a team to do chemo first before the surgery. 
 8:45: And one of the reasons was that with my DXM age and everything,, basically, he came, my oncologist said, we don't have a set treatment plan for people like you. 
 8:58: Your age group with your, he's like, we're just gonna have to kinda make it up. 
 9:02: So we're not even sure the chemo is gonna work. 
 9:05: So I'm like,, what does that mean? 
 9:08: So, set up for 8 rounds of chemo and the decision was, if it didn't look like it was doing anything that we would just stop the chemo and go straight to surgery. 
 9:16: But I wanted to know if the chemo was working and if we did surgery first, then it's like, it just seemed really weird. 
 9:22: So after 8 rounds of chemo, then went and had scans, and the scans showed me clear. 
 9:28: Yeah, went into surgery, discovered I still had active breast cancer in my breast and in my lymph nodes, at which time I was very thankful that I had decided to go ahead and have the bilateral mastectomy, even though there are a lot of people who would argue against it. 
 9:44: Because as far as the data is concerned, you're, you're not likely to have a recurrence in the other breast. 
 9:50: But you're telling me that you didn't see my active cancer in my breast. 
 9:53: My breasts are dense. 
 9:54: I'm only 41 years old at this time, and you're telling me I'm gonna, would have to live a whole life with all this anxiety. 
 10:01: So at this time, I was very glad, despite the fact that I didn't know when I made that choice, that the chemo had not actually, it had shrunk the tumor by about half. 
 10:10: But having had active cancer in the lymph nodes still, it was not quite what I was hoping to wake up to. 
 10:18: Just put it that way. 
 10:19: For many cancer patients, treatment involves chemotherapy or radiation, sometimes both. 
 10:25: Both of these treatments can cause horrible side effects. 
 10:28: For example, a person getting chemotherapy might experience extreme nausea in the days after their treatment. 
 10:34: Their medical record might mention nausea and go into detail about whether certain foods triggered it, how long it lasted, and how severe it was. 
 10:42: In a data set, the side effects of nausea might be reduced down even further to just yes or no to nausea. 
 10:49: So here we can see an example where details about the severity of nausea are lost if we are simply reducing the data down to the presence or absence of nausea symptoms. 
 11:01: We can think about this in my mind, a lot of this data reduction or choosing kind of what we need to focus on. 
 11:08: It's a lot like focusing, you know, if you've been to the eye doctor and you're, you're zooming in or zooming out and just trying to get things into clarity, right? 
 11:16: What kind of research is about is trying to figure out what is the greater, bigger picture here. 
 11:20: And sometimes that means you need to zoom in on details, and sometimes that means you need to zoom out on details, but usually you can't necessarily hold both at the same time. 
 11:29: We have to almost make these kinds of decisions in order to try to get clarity. 
 11:33: So while we might want to collect all the possible data that we could on an individual, that's burdensome for research participants and patients, and we don't necessarily want to do that for people. 
 11:45: And also, usually we're focused on a particular hypothesis of what we're trying to figure out. 
 11:51: We have an idea that maybe something is related to cancer risk, and we're investigating that, for instance. 
 11:57: And then we're not necessarily going to collect a bunch of additional data about something else. 
 12:02: Being targeted is really important for not only the researchers and the research, but also the participants of the research. 
 12:09: Thanks to years of collecting data, doctors know what side effects a patient is like. 
 12:14: likely to experience based on their diagnosis and physical characteristics. 
 12:18: But this is also variable depending on what kind of cancer and their demographics. 
 12:22: So, again, all this is kind of the, the best guess sometimes of what a doctor might know and, and what we might guess would happen. 
 12:30: And this means that patients can sometimes take precautions to try to limit these side effects if they know that this is likely to happen. 
 12:37: Christina Ci explained the emotional toll these side effects had on both her and her husband. 
 12:50: OK, so my story is intertwined with my husband's and he was first diagnosed in 2017 with head and neck cancer, and he did all the treatment and went through everything. 
 13:01: I mean, it was brutal. 
 13:03: So when he was declared Ned, no evidence of disease, I was like, OK, it's done, it's over, we're good, we can move on with our lives. 
 13:11: We were looking at getting a nice little mountain home, something just to kind of get away. 
 13:18: And then I was diagnosed with breast cancer. 
 13:20: And that's such a hard thing, by the way, because we had just gone through this and we thought we're in the clear and it's great. 
 13:27: And then I have to go and say, so guess what? 
 13:30: It's not over. 
 13:31: Mine was stage 3, grade 3. 
 13:33: It's hard when you realize you're going to lose everything. 
 13:36: And the thought of losing my hair, which everybody comments on my hair because it's natural. 
 13:42: But she was also upfront about the fact that because I am a natural blonde, that means my hair is Thinner, so there's no guarantee that I will keep my hair. 
 13:51: She was right. 
 13:52: I lost like a huge chunk of here where you could see my scalp, but it was growing in as it was falling out. 
 13:57: It was weird. 
 13:58: And the worst moment for me was the first time I sat in that chair, and I had my cold cap on and I'm trying to be all cheery and happy. 
 14:06: And I look over at my husband, he has one tear coming down his cheek. 
 14:10: And I was just like, OK. 
 14:12: You know, like, how do you process that, realizing, here's a guy who doesn't cry, and he's crying. 
 14:21: Sometimes a patient's cancer doesn't respond to the treatments like surgery, chemotherapy, radiation, immunotherapy in the way that an oncologist might hope. 
 14:33: In these cases, the patients might be enrolled in an experimental clinical trial. 
 14:37: For patients who join these trials, their data will know whether they were assigned to either the experimental or controlled track. 
 14:44: Patients are randomly assigned to either receive, A new treatment that's being tested called the experimental track, or the current standard of care, called the control track. 
 14:53: The goal is to determine whether the experimental treatment results in a better outcome and survival than the current standard of care. 
 14:59: Grace Waller talked to us about participating in one of these trials as a part of her treatment. 
 15:04: We mentioned age as the biggest risk factor, which is why childhood cancer diagnoses in particular, can feel so shocking. 
 15:18: So I was diagnosed with osteosarcoma in December of 2008. 
 15:22: I was 15 years old when I was diagnosed. 
 15:25: Started off, I was a competitive swimmer since the age of 7 and I was a brush stroker at the time. 
 15:30: And was just having really, really bad knee pain. 
 15:34: And, you know, brush stroke is a weird frog kick. 
 15:36: So it's not uncommon to have tendinitis or a torn ligament in your knee. 
 15:41: So I finished out the rest of the season, my swimming season in in high school and just figured,, you know, I'll, I'll rehab it in the offseason. 
 15:49: Well, I, I went to get an X-ray and I remember that day they took me. 
 15:53: In to X-ray my right knee where I was having pain. 
 15:55: And then they brought me back in to get another X-ray of my left leg. 
 15:59: Well, it turns out that they had seen a tumor and wanted to let my parents know before telling me because I was so, so young. 
 16:06: So my local doctor referred me to Rush University Medical University in Chicago to get a biopsy and look at it further. 
 16:14: And, and they said it could be a couple of different things. 
 16:17: It could be malignant, benign, or it could be an infection. 
 16:20: So we were obviously, as anyone would be hoping for an infection, so we could clean it up pretty easily, but unfortunately, it turned out to be osteosarcoma. 
 16:29: So I got a biopsy. 
 16:31: They found out pretty quickly and then I started, started chemo really shortly after in the new year of 09. 
 16:37: So I started off. 
 16:38: With 6 rounds of chemotherapy, and each round of treatment was inpatient, about 7 to 10 days on average inpatient while I was getting infusions. 
 16:48: So after those 1st 6 rounds, they did the reconstructive surgery of my right knee and femur. 
 16:54: So I have a total knee replacement and then 6 inches of my femur and then about an inch or 2 into my shin. 
 17:01: To clean out the tumor, and you know, all surrounding margins and to replace the bone, it's biome compress is what it's made out of. 
 17:09: So it's a big old titanium leg. 
 17:11: So after that, they tested the tumor to see how effective the chemo was against the tumor. 
 17:18: And it sounds good, but it was only 80% dead, which I thought was a great thing, but I guess it wasn't in the cancer world. 
 17:26: So because it was only 80% dead, I was randomized into what they called at the time an experimental track. 
 17:34: So I had The opportunity to participate in the experimental track to get new chemo drugs to see how well your body would respond to them. 
 17:43: It was more for the long term effects. 
 17:45: So because it was an experimental track, it was much longer because they introduced new chemo drugs into the regimen. 
 17:52: So it ended up being 14 more rounds of chemo. 
 17:55: So on the positive side, they threw everything in the kitchen sink at me to kill off whatever cancer cells were still remaining. 
 18:03: So that was a positive and, you know, I'm over 10 years cancer free now, so it's definitely been effective and that experimental track is now part of the standard of care for treatment for osteosarcoma. 
 18:16: So yes, it was, you know, difficult in the moment to know that I had to do 14 more rounds after coming off of 6 pretty grueling treatments, but I do know that that it has been effective. 
 18:27: And it's been good to know that that's what is the standard now. 
 18:31: In some ways, childhood cancers almost feel particularly cruel, because no one really expects that that's going to happen to either their child or them if they are a child, sometimes I don't know that they can always comprehend the trauma of it. 
 18:46: And so just all that to say that risk factors are So multidimensional and it was really impactful to hear about Grace's particular experience with cancer. 
 18:56: Grace's experimental treatment was considered successful. 
 18:59: In the data set, this is probably coded as a number that stands for recovery, but because Grace was one of the first people to receive this treatment, no one really knew how long her recovery might take or how well it would last. 
 19:16: I'll start with what surprised me physically throughout the process. 
 19:20: I was not prepared for how long it would take me to fully recover in terms of being back to walking at a normal speed. 
 19:31: Like I mentioned before, because the chemo was doing its job and stopping growth, it was also stopping that bone growth around my device. 
 19:41: So, fun fact, my device was actually one of the first ones in Chicago that was put in. 
 19:46: So we didn't have too much research on the device to know what the recovery process was like, how long it will last even. 
 19:55: What's unique about mine is that it's drilled into the bone and screwed in, whereas other ones that have osteosarcoma was glued in. 
 20:03: So the recovery process when it's glued in is a lot faster because it's not dependent on bone growth. 
 20:08: So we were all a little bit hesitant on how long it would take, but as soon as I stopped chemo, the bone growth started back up and then it solidified and I was able to be more weight bearing. 
 20:18: And you know, work through rehab and being a competitive swimmer, swimming was, you know, the best thing that you can possibly do when you're going through any type of rehab. 
 20:28: So that totally helped the the non-weight bearing activity, but also strengthening that muscle backup. 
 20:34: And yeah, that helped a lot. 
 20:36: In terms of the mental side of my recovery, because I had to Disconnect from, you know, kind of what was happening and really focus on the here and now. 
 20:47: I didn't really process things until years after. 
 20:50: I didn't really let myself because I had very rigid goals in mind. 
 20:54: I wanted to get back to competitive swimming. 
 20:56: I wanted to swim in college. 
 20:58: And then once I achieved that, it was, OK, now I need to compete in college. 
 21:02: Now I need to go to college. 
 21:03: Now I need to graduate from college. 
 21:05: And then once that's done, and then once my swimming career came to an end after I graduated college, it was like, and now what? 
 21:12: I know I've talked to other college athletes in the past about an identity crisis, once your sport has concluded. 
 21:20: So I had that to deal with mentally, but then also, oh my gosh, what did I go through and how has my life been affected because of this pretty traumatic thing that I went through as a kid? 
 21:32: And so it's taken a while to continue to go through and process everything. 
 21:37: The goal for most patients is to be declared cancer free. 
 21:41: When this happens, their medical record will state that they're remission. 
 21:44: Sometimes this is coded as NED or Ned or no evidence of disease. 
 21:50: In the data sets, sometimes this means that the story for this person is no longer recorded after they are declared Ned or no evidence of disease. 
 22:00: However, for these patients being declared Ned necessarily mean that their cancer recovery is over. 
 22:06: Joe explained how her cancer. 
 22:07: diagnosis is still part of her life, even 10 years after being declared disease-free. 
 22:13: One of the things that they don't really talk to you about when, when you're first diagnosed or even when you're going through treatment, is this, oh, this is going to be a part of your life for the rest of your life. 
 22:22: You think, oh, I'm gonna finish chemo, I'm gonna have surgery. 
 22:25: I'm gonna be done. 
 22:27: I'm out of here. 
 22:29: And then they tell you, oh, by the way. 
 22:32: You need to come back, you know, every 3 months or 6 months or whatever. 
 22:35: You possibly need to be on medication for the next 10 years, 5 to 10 years. 
 22:40: You may have these side effects that are long lasting, whether they are hair loss or neuropathy, or, and they just don't do a very good job. 
 22:51: They get these wrong generalizations. 
 22:53: I'm sure there's some out there who do a very good job. 
 22:55: I kind of explaining that this is a long term. 
 22:59: Oh, and then here's your chance of recurrence, cause I've met people who, after the breast cancer, they're like, I'm done. 
 23:05: I, I don't ever have to think about it again. 
 23:06: And you're like, you know, you always have a chance of recurrence, even if it's slow, there's always a chance of recurrence. 
 23:13: You're like, why didn't your doctor tell you this, that it's still, oh, I don't have breast. 
 23:17: That doesn't, no, you can still. 
 23:19: It could still metastasize. 
 23:20: Oh my God,, breast cancer metastasis happens. 
 23:26: And so a lot of people are surprised to find that out, that they're never truly done. 
 23:32: They're never truly, I don't ever use the word cure, cause there's never a null chance as long as I'm still alive, that I won't have to deal with cancer again. 
 23:41: And all things we And there's never a no chance that anybody alive never has to deal with a chance of cancer. 
 23:47: But the fear of recurrence or metastasis is always there. 
 23:52: And then, you know, I have friends who are much younger than me who have half of second recurrences that are metastatic. 
 23:59: I think we're really bad at letting people know just because you had early stage breast cancer, that doesn't mean you can't have metastatic breast cancer later. 
 24:06: And it's not that I want people to be fearful or anxious, but just to be aware, like, yeah, if you have that new thing, ay, talk to somebody. 
 24:16: Don't just ignore it. 
 24:18: And I think that's one of the things is that, oh, this is gonna be a part of my life forever and I just need to figure out ways to deal with that, and part of that comes out in the advocacy. 
 24:28: 10 years. 
 24:29: And in between that, I've had some scans and some numbers that look weird. 
 24:34: I've had several biopsies. 
 24:37: I, I had a liver biopsy. 
 24:39: I had a biopsy of a lymph node near my heart. 
 24:42: I had a lymph node removed from behind my diaphragm, which they had come back with like basically inconclusive, but, you know, we were all kind of going down that road that it was metastatic breast cancer cause what else would would light up the MRI. 
 24:58: It was not a calm 10 years. 
 25:00: Because I was adopted, I had decided to get the extended genetic panel done, in which I found out that I had Lynch syndrome, which is a genetic mutation that is with colon cancer, gastrointestinal cancers, endometrial cancer, and several others. 
 25:17: So, I've also been getting colonoscopies and endoscopes for the last 10 years because Yes, that's where my genetic mutation actually lies, is then ended up getting a total hysterectomy cause if you've ever had a biopsy on your uterine, you kind of decide one or two of those is plenty. 
 25:36: And then, of course, the tamoxifen and everything can also increase your chances of ovarian cancer. 
 25:42: And with ovarian cancer, there's no pre-screening. 
 25:44: You either have it or you don't. 
 25:46: So did a total hysterectomy a couple of years in. 
 25:50: Again, just because That anxiety that hangs over you every time you go get something done. 
 25:56: So yeah, I'll still be seeing my oncologist every 6 months. 
 26:00: She's decided that as opposed to yearly, just because I've had a lot of weirdness happen and I have the lynch and everything that, that she wants to keep in touch with. 
 26:09: Little more often than, than maybe a normal, whatever that means. 
 26:13: Everybody has their individual path. 
 26:16: Overall, researchers summarized the number of people who Recovered the number of people who didn't in a statistic called survival rate. 
 26:24: This is the percentage of people with a particular cancer who are still alive for a certain period after they were diagnosed. 
 26:29: We commonly report 15, or 10 years survival rates for cancer. 
 26:35: But Christina, rightly so, feels that this summary statistic doesn't really tell the full story of the lived experience of cancer survivors, cancer patients and their loved ones. 
 26:49: The fact that when Ron was first diagnosed with head and neck cancer, it was a rare, not really diagnosed cancer, so there wasn't a lot of research. 
 26:59: When he was diagnosed as metastatic, his oncologist explained, well, we still don't really have the research. 
 27:05: The money isn't there. 
 27:06: But here's what we're going to do, because he had less than a 2% chance of surviving. 
 27:11: months with his diagnosis through Moffat and through clinical trials and always saying, hey, this is a novel approach. 
 27:18: There's a new, we're doing this. 
 27:20: He lasted 26 months. 
 27:22: To me, Ron wasn't the failure. 
 27:24: It was the success because we had him for 26 months. 
 27:29: And I know data wise, it's a failure because he died. 
 27:33: But personally, it was a success because we had Christmases with him. 
 27:37: We had birthdays, we had things that we wouldn't have had. 
 27:42: So I think that we have to look at what's your definition of a failure versus what's your definition of, hey, it worked. 
 27:49: And I know that's hard when it comes to data. 
 27:53: That's the problem is when you add in personal thoughts or personal feelings, you can't computate that, but maybe as a side note, put it as a footnote something that or mention the fact that there is a variable, and that is the person. 
 28:13: And the variables should be considered of, OK, so your success is the person lived. 
 28:20: Failure is the person died, but put in that variable of what is failure and what is success. 
 28:27: It's hard computation wise, that's the problem, right. 
 28:31: Talking to Christina really highlighted the differences and how we can learn about the lived experiences by talking to individuals as well as learn about trends from traditional forms of data. 
 28:43: Sometimes when we're diving too much into the details for specific hypothesis, we can lose perspective of the big picture. 
 28:49: Talking to cancer survivors can help us not only be more motivated, but also re-enter our research. 
 28:56: On the needs of those that were performing the research for those who have cancer and their loved ones. 
 29:02: Some researchers are moving in a longer term direction in terms of how they evaluate survival. 
 29:08: This helps us to better understand what survivorship really means. 
 29:12: The idea for this episode actually came from our podcast guests. 
 29:16: We had begun to kind of formulate this idea of doing a podcast, and honestly, we're having a little bit of trouble of knowing where to start, but Carrie and I were at a conference in 2023, and we heard Christina CC talk about her lived experience, about her husband's lived experience, and we found it profoundly moving and impactful. 
 29:38: I recall that when Christina gave her talk, I looked around the room, I was feeling very moved. 
 29:44: Many of the other researchers were as well and and some of us were moved to tears because we also have personal experiences with cancer and we're reminded In these moments of why we're doing this. 
 29:56: And so we thought that it would be really important to have an episode that really features the voices of those who are affected by cancer directly. 
 30:04: We're working to mitigate the horrible experience of cancer and potentially someday rid it of its cruelty. 
 30:10: Just make it so that way, people who have had these experiences, no one in the future has to go through this. 
 30:16: According to the NIH, a patient advocate is a person who helps guide a patient through the healthcare system. 
 30:22: Kits can help patients through screenings, diagnosis, treatments and follow-up stages. 
 30:27: This can include helping them talk with doctors, insurance companies, employers, legal representatives, and anyone else a patient might need to connect with. 
 30:35: It also includes talking with researchers about patients. 
 30:39: Christina sees her work as an advocate as vital for getting researchers to consider the patient and caregiver perspective in the research process. 
 30:47: The talk that Christina gave was an extension of her work as a patient advocate. 
 30:51: As you might be able to tell from hearing from some of our guests in this episode, many of them have taken their experiences as patients and cancer survivors and used it to support other current patients, whether as patient advocates or otherwise. 
 31:04: I remember in my speech, I was talking about how Moffat has Moffet day where we go up to Tallahassee to talk to legislators. 
 31:12: In each group, there is a researcher, whether it's, you know, an ITCR or otherwise, and they heard our stories and they Interacted with it. 
 31:21: I mean, they were able to ask us questions. 
 31:23: We're there to help them understand, not just legislatures, but researchers to understand. 
 31:29: Here's our reality. 
 31:30: Here's what we need. 
 31:32: Here's what we would like people to know. 
 31:35: And at the end of the day, talking to the researchers, they said this was eye-opening. 
 31:39: They didn't understand what it was they were really doing until they met patients and listened and saw. 
 31:47: And so I would say that. 
 31:49: If there is a patient advocacy group associated with where they're at, get involved, go in and talk, see if you can just listen. 
 31:58: I mean that to me is one of the biggest communication skills that's ever looked is listening. 
 32:03: This is what you're doing. 
 32:04: This is how it impacts. 
 32:05: These are the people that ultimately you're going to try and save, and if not them, then, you know, there's people behind them coming up. 
 32:14: Patients and family members are more than happy to talk to oncologists, researchers. 
 32:20: Take that opportunity. 
 32:21: Obviously, it doesn't have to be miles from off it, but if your cancer center has something like a huge fundraising event where patients and families are involved, go to it. 
 32:31: Make a point of talking to at least one patient, at least one family member or friend. 
 32:37: I am heartened by the trend to involve patients and caregivers. 
 32:42: 10 years ago, it wouldn't even be a thing. 
 32:44: So the fact that there is this acknowledgement that the patient voice or a caregiver voice is important in the process, shows me that we as a community, patients and caregivers, are being recognized that what we go through matters and it counts, and people want to know, what do we need to know about your condition. 
 33:07: For Grace, being an advocate for kids with cancer and for increased funding for childhood cancer research is how she's able to give back. 
 33:14: And it's also how she can help future kids get to be just kids while growing up. 
 33:19: It's also helped her process her cancer and what she went through as a child herself. 
 33:24: So personally, while I was going through it, it was a very ambiguous topic to me. 
 33:28: One, I was so young, 2, you know, I kind of had a disconnect and just focus on getting through to the next day. 
 33:34: But I do remember and what's stuck with me since then is the lack of funding for childhood cancer. 
 33:41: And what is it some like 4% of the total budget goes to childhood cancer rather than adults and it's hard to reconcile with because we're always talking about how children are the future. 
 33:51: Well, you know, we need to protect our children, we need to help them and pour more money and resources into childhood cancer, so. 
 33:59: I'm in the middle because as I've kind of grown and processed the experience, you know, I've gotten a little bit more into helping kids in the cancer world and I've always focused on, you know, how can we support them and, you know, donate money to them and and fund it, but not so much in the like deep dive research a ton because It's a little raw still, and I know that it is more rare childhood cancer is more rare than, you know, adult and there's less variance to or subsets of cancer. 
 34:32: However, you know, it's formally defined, but it's true, it's, you kind of, I don't know, see the patient or the person more as a number or a statistic or with. 
 34:43: Spreadsheets and kind of lose that connection to who they really are as a young little kid. 
 34:50: Joe views communication between researchers and cancer patients as a way to rebuild trust between biomedical researchers and communities that have been harmed in the past. 
 34:59: We're here, we want to help, and even though we don't necessarily always understand what you're talking about. 
 35:06: Again, if you could take those 5 minutes and explain it to us, A, that proves to be, you know what you're doing, and B, that gives me a reason to support you. 
 35:16: And so, you probably even more importantly, is as somebody, you don't go and do a doctorate if you don't like doing research and going to school just kind of for the sake of doing it. 
 35:27: But it's so easy to kind of get lost in the work and to kind of forget. 
 35:31: I think for the. 
 35:32: Majority of people who are in cancer research, that there's a reason you got into cancer research. 
 35:37: It's not the money. 
 35:38: It's not, you know, it's not the same. 
 35:41: So just always try to keep in mind through that data through the through the the long hours, what is going to be the impact of this and how is this moving things forward? 
 35:53: Because as much as I love doing research just for the sake of doing research, we, we don't have that. 
 35:59: Luxury when it comes to cancer research. 
 36:02: You need to make sure that we're, we're pushing things forward. 
 36:05: We very much get lost in the data, and we can find ourselves forgetting why we're here. 
 36:10: So just kind of look up every once in a while and remind yourself. 
 36:14: How is this moving the state forward. 
 36:16: And if you need to ground yourself by talking to a patient advocate, just have that conversation to remind yourself, you know, why you're here. 
 36:23: And so building those relationships take time, and they take effort. 
 36:29: You Have to have the communication. 
 36:31: And I see that's still lacking so much in a lot of places that we're still not having that communication. 
 36:37: We're just saying, trust us, but we're not showing them why. 
 36:41: We sometimes have to take off that hat of, I'm the expert, you just do what I say and go, I understand you're having anxiety. 
 36:49: I understand you're, you're confused. 
 36:51: Let me try to, to address those actual concerns. 
 36:55: And until we actually address the concerns, we're not going to be listened to. 
 36:59: But at the same time, we have to make it so that those of us who are working for solutions and cures, we have that voice of reason and of not, but that we're not being patronizing. 
 37:13: I think we've been so patronizing for so long, that's part of it, and that you can't just talk down to people and expect them to believe you just because you have that air of authority. 
 37:25: You have to earn. 
 37:26: And I think we need to to start earning it again. 
 37:29: Joe Kenny raised a really compelling point about building and nurturing the relationship between research and the broader society. 
 37:36: It's especially important nowadays when so many people deeply mistrust the medical community and many medical advances. 
 37:43: In the next episode, we will discuss a very important topic called biomedical ethics, which has helped to shape policies to protect the well-being of people who are Participating in research, especially in the context of sharing data. 
 37:56: Thank you for listening to Cracking the Cancer Code. 
 37:58: This podcast is sponsored by the National Cancer Institute through the Informatics Technology for Cancer Research Program, grant number UE5CA254170. 
 38:09: The views expressed in this podcast do not reflect those of our funders or employers. 
 38:13: We want to thank Joe Kenny, Christina Ci and Grace Waller for sharing their experiences with us. 
 38:19: It's no small feat to be so vulnerable and sharing these stories with us. 
 38:24: It was a hard time in their life and they continue to do this work to make sure that others are supported in these hard times. 
 38:31: We just really appreciate that they opened up to us. 
 38:34: This was some of the first podcast interviewing we had done, Carrie and I, and definitely blew me away at just thoughtfulness and the vulnerability and their continued work. 
 38:45: The other thing that I found important in talking to these cancer survivors is not just kind of a re-centering and a motivation for our larger work, but kind of a re-learning on what can we do just as humans, not just as researchers but as humans to help support them in their individual lives if they have, which they almost everyone at some point will probably have a loved one who has cancer, it's very likely. 
 39:10: And so talking to these cancer survivors was very helpful for me as a human being and not as a researcher to just understand how can I be supporting them in their potentially darkest hour of their life. 
 39:24: And so some of the best advice that we got from them was actually sometimes they just need a bit of normalcy and like don't disappear, just be there, even if you feel awkward or like you're doing it wrong, you just being there. 
 39:38: Sending memes is what Grace had told us. 
 39:41: So that way they can feel a little bit like, especially if they are younger folks feeling like they aren't totally missing out on life and just Christina had also told a really impactful story about how her friend just came over and sat in her pajamas and they ate ice cream or whatever and just like cause she told her, I just got through chemo. 
 39:59: I'm a mess. 
 39:59: You don't want to come over. 
 40:00: And she was like, I'll be a mess too. 
 40:02: Let's go be a mess together. 
 40:03: Those kinds of stories from these cancer survivors. 
 40:05: I just found very impactful and that we all as humans, researchers are not, could benefit from practicing that kind of support for others more. 
 40:15: Another reoccurring theme that we unfortunately heard in talking to all of these guests is that all of them lost people by having cancer. 
 40:24: They all had people who just didn't quite know what to do, didn't know how to help, so they just kind of gave up and that really them. 
 40:32: They attributed this to people being scared or confused about how to best support them. 
 40:39: So one thing that you can do that's really helpful is to just stick with it and keep sending little messages, just keep trying. 
 40:46: The cancer survivors, they know you can't solve their cancer for them. 
 40:50: That is what their doctors are for. 
 40:52: But what you can continue to do that's super helpful is just be their friend and be there for them. 
 40:57: So why is talking to Cancer advocates so helpful for researchers and something that's unfortunately somewhat neglected. 
 41:05: Well, advocates can give information about what treatments are really possible together, what the experience is like for a patient so that we don't start working on hypotheses that don't really make sense. 
 41:16: We think that data like this can help cancer survivors and cancer patients be better supported in all of the ways that humans need to be supported.