Don’t Give Up on Testicular Cancer

Listening to the Patient - A Researcher's Point of View - Episode #18

March 18, 2021 The Max Mallory Foundation - Joyce Lofstrom host Season 1 Episode 18
Don’t Give Up on Testicular Cancer
Listening to the Patient - A Researcher's Point of View - Episode #18
Show Notes Transcript

Deborah Bekele is a medical anthropology doctoral candidate studying testicular and prostate cancer. Her Ph.D. focuses on men’s health promotion and advocacy. Listen to her insights on testicular cancer gained from her patient interviews on the podcast Don't Give Up on Testicular Cancer from the Max Mallory Foundation. 

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00:00 | JOYCE | Welcome to Don't Give Up on Testicular Cancer, where cancer survivors, caregivers, and others touched by cancer share their stories. The Max Mallory Foundation presents this podcast in honor and memory of Max Mallory, who died at age 22 from testicular cancer. I'm your host, Joyce Lofstrom, a young adult and adult cancer survivor, and Max's mom. With me today is Deborah Bekele. And Deborah  is a researcher on men's health and testicular cancer and prostate cancer, but I will let her fill in the details on all of this. So Debora, I'm so glad you could join me today.
00:52 | DEBORAH BEKELE | Thank you for having me, Joyce.
00:56 | JOYCE | So tell us a little bit about your area of study. I know it's medical anthropology, and you've also combined medicine with anthropology. I think that's a good place to start to just explain that to us.
01:06 | DEBORAH BEKELE | Sure. So as you mentioned, I'm doing a PhD specifically in medical anthropology, and it's a specific area within anthropology that focuses on health systems, illness narratives, cultural manifestations of illness, and it takes anthropological methodologies, so ethnographies, participant observation, a lot of qualitative, so qualitative in layman terms, or interviews, or field notes, qualitative approach to understanding illnesses and health amongst particular or specific area of the population or groups of people.
01:50 | JOYCE | So you mentioned interviews, so you probably get to meet a lot of interesting people as you do this, which I know we'll get into as we talk about it. So that's a good segue, I guess, to your actual research in the study that you're doing as part of your PhD work. Can you talk about that?
02:08 | DEBORAH BEKELE | Sure. So I began a little bit about specific, just to touch on my background. I first wanted to study pharmacy because I was really interested in sort of the mechanisms of how and why people got sick and stayed sick and how medicine helped them to recover from that. And as I went along in that career, I realized that I was really interested in the sociocultural, historical or non-medical impacts or influences on why people got sick and stayed sick. And that led me into anthropology and I ended up getting a master's in social epidemiology, which is epidemics, which I think most of us are now familiar with the pandemic. Sort of large groups of people getting sick based on one type of disease or many multiple diseases. And then that obviously led me into doing a PhD in medical anthropology. And I initially was starting to look at my particular interest: looking into populations that don't utilize health services quite as often. And initially I wanted to look at mental health amongst migrant men in Spain, specifically where I'm based now. And I realized that there's quite a bit of research based on that area and there's a lot of information. So I wanted to look into areas that are not really touched upon or haven't been touched upon. And through a long winding road, I ended up researching my now dissertation on testicular and prostate cancer because there is actually very little information from a qualitative perspective on this particular topic. And though some might argue with me that there is information about it, this particular group of people in this particular illness, say in Australia or the UK, the US, ironically enough, there isn't that much knowledge or research done in other areas within Europe, for example, or other developed nations as they call it. So my interest is to explore that and to bring more understanding into men specifically in Spain, but in general on this particular area of prostate and testicular cancer.
04:07 | JOYCE | I think that's very interesting and also needed. I don't know the details about Spain, but as you say, it's an area that I think across the world hasn't been studied enough about men's health and testicular cancer and prostate cancer. So I congratulate you for doing it. I think it will be so helpful to all of us when you have your research and what you found. I read this in an article, but is there any background that you set along a winding road to get to this study area? But any particular reason why you picked prostate and testicular cancer or just happened to be an area to go for?
05:06 | DEBORAH BEKELE | I feel that with any of these, I don't know, I always hear these stories of like you think you're going to be doing one thing and all of a sudden something else pops up and the least thing that you were expecting. This is exactly what happened with me. I realized early on when I had started my PhD that perhaps mental health was going to be trying to find a specific niche which would have involved, for example, having to learn a specific dialect of Wolof, which is the language, official language of Senegal because there's many Senegalese migrants living in Spain, particularly in Barcelona. I would have needed to learn that language in order for me to get a better understanding of the cultural dynamics within mental health amongst this particular group of people. And I realized that it would take much longer than I anticipated to finish my PhD. And also there's already so much information in that field. So I was speaking with somebody whom I had met at a conference and he said, well, you know, there aren't many people speaking about prostate or not many people looking into prostate and testicular cancer and perhaps you should look into that. And ironically, it made me realize that my father actually many years prior to that conversation I was having had been diagnosed and is a prostate cancer survivor. And so at that point I thought, oh, wow, that's true. You know, I don't really have anybody apart from my own father who's who I knew of who had been diagnosed or experienced this particular cancer, even anyone around my age group who had been diagnosed or were survivors of testicular cancer. And as I did a preliminary research, literature research, I found that not only was as little known about it, but there's little qualitative research that's looking into it. Yes, there exists a lot of research that are based on service use or spousal support in paid or family or spousal support or caregivers for patients who had testicular or prostate cancer. There are very few studies that have actually focused on men just themselves and how they utilize, say, support groups to understand the illness and work through their diagnosis and their treatment. Naturally, since that was an area that hasn't really been investigated, I kept digging and digging and digging. And the more that I got further into it, the more I realized there was actually a very important and necessary area that needs to be explored and understood, especially from the male perspective and not from, say, the health care or the caregiver's perspective, which are very, very important perspectives to have. Yet again, there are very little studies that are just directly asking men how do they experience their treatment and their illness and how do they get through it and what services and support groups they use to pass through that.
08:06 | JOYCE | Okay. I'm just thinking about the whole idea of support groups because I like them and I have been to several throughout my life, but I'm also a woman, so I have a different perspective on that, I guess. That's a good kind of segue to some of your research and listening to the voice of the patient. Are there any comments or insights that you can share about some of the conversations that you've had with patients?
08:36 | DEBORAH BEKELE | Sure. I think overall, the overarching theme that seems to pop up, whether I'm speaking to testicular cancer patients or prostate cancer patients, which in and of themselves are two separate age groups. So when thinking about the dynamics and the outcomes of the treatments or quality of life or the impacts on quality of life with treatments in different age groups are going to be impacting these two age groups quite differently. But yet the common theme between them is this sense of isolation, which I found that when many of the men who, or not many, sorry, some of the men who used or participated in support groups spoke about how having the shared experience with other men who had gone through the same treatment and diagnosis as them created less of a feeling of isolation, whereas very many men are not accessing or are not even aware that social support groups or organizations that are focused on their particular cancer exist. And so they have the sense of trudging through information and having to find information on their own, not really knowing anybody that they can turn to that has had that sort of experience. Or even if they do know a few people, their information or their experiences are very limited. So it's the sense of having to go along this trajectory of their diagnosis and treatment alone. And yes, it comes with, you know, if they are lucky to have a spouse that's very involved and very supportive, that is an important factor in helping them cope with the diagnosis. But even then, it's this feeling of, well, okay, my wife or my sister or my girlfriend or whomever may understand what I'm going through. It may be empathetic, but they are lack of sympathy. They may be sympathetic, but there's a lack of empathy as well, because it's not something that they particularly experience themselves because it's an illness, it's a male's illness. And so there's a sense of isolation.
10:49 | JOYCE | I feel that it was a very common thread that linked both groups. And I think from the some of the men I've interviewed for the podcast, it's the same thing as trying to find someone that they could talk to or just feeling alone. I know in some of our previous conversations, Deborah, we've talked about, or we mentioned there are many, at least in the US, which is where I am, many organizations out there online. But everybody's for testicular cancer, but everyone's kind of doing their own thing, so to speak. And then hopefully, and I think your research would probably, not probably, would help this is getting everybody together, trying to speak more consistently with one voice. But that's just my editorial comment here.
11:38 | DEBORAH BEKELE | So I absolutely agree. I mean, it's very fragmented in the sense that it's great that there are many organizations and there's a lot of awareness. And in fact, I'm right now writing up an article, hopefully to get published. And my argument is that despite there being so many organizations, they're each one, and rightfully so, and set their sort of, has a specific agenda or objective, even if it's based on the same cancer, prostate or testicular cancer. But yet it's fragmented. And I feel that if in some way that they could all join forces, or there could be one central location where one could go to access, say like a database where they could say, okay, you Google prostate cancer support groups or testicular cancer support groups, and you're able to find a database that has maybe an organization in your area or all the organizations that exist if, say, you want to see what they're offering, or maybe you could join now that everything seems to be online anyways, you can join the support groups that are via Zoom. And yeah, I'm hoping that there's much more awareness in trying to unify these groups.
12:52 | JOYCE | There are a lot. So I think you summarized it quite well, and hopefully that is something that will happen down the road sooner than later. My next question is around the patient voice again, and I'm going to make this comment based on my experience with my son Max, who died from testicular cancer. But I always found or thought that watching some of the care throughout his seven-month journey that protocol took over instead of personalization, and that's a very general comment. But there were times I felt that we weren't listened to or he wasn't listened to, and I'm wondering from your research if you have any thoughts on do you think patients are really heard during their cancer treatment, or how much do you think they might be heard?
13:36 | DEBORAH BEKELE | I don't want to, you know, castigate the doctors and the healthcare practitioners, because I think their role is very important and vital, obviously, for the treatment and care of any patient. I just feel that there are so many different pieces that play into the health outcome of any person who has an illness. But in particular, because I think in general we have a tendency to overlook or perhaps not put any importance to the quote-unquote suffering of male patients. And so when it comes to a male patient, or any patient in that matter, discussing their particular experience with their illness or their diagnosis, it can sometimes be overlooked from a healthcare practitioner's perspective, because the healthcare practitioner essentially is trying to treat the body and trying to make sure that the person who's getting, who has the diagnosis, is coming out of that diagnosis alive and as well as they can be based on whatever their illness is. And I think that the voice of the patient, particularly in testicular and prostate cancer, is very essential, because there are at the moment many protocols and guidelines that are based on screening or diagnosis or treatments, and there are very little protocols or guidelines on maintaining or incorporating the particular perspective and experiences passed through men or men that pass through those types of treatments or diagnosis, excuse me. And I think more has to be done in incorporating their voice into the protocols or service use or recommendations given to doctors or nurses that are involved in testicular prostate ancer patients' care to allow them to understand that it's not just the body, but it's also the person that is carrying this disease that needs to be taken into consideration.
15:54 | JOYCE | I think that's a good summary of it's more than just your body. It's your whole, it's your mindset, it's your psyche, it's so many things that go into it. And I want to emphasize too, I was not disparaging the physicians who took care of Max or anything. And it can come across like that. I know when I say that, but it's just something that I, I'm not a medical person, so I don't know about all the ways that things are decided and so forth. But I'm also the mom, so I think the mom has a perspective too as taking care of their kid or their son. But anything else from your research that you want to point out or share on this?
16:52 | DEBORAH BEKELE | Yeah, I think one other thing that I feel that this is something that comes up a lot in any of my experiences, particularly working within the medical anthropology field, is that the information that's provided to patients and it needs to be not, as it, well, the best way to say it is provided for a lay person, so not be scientifically heavy in vocabulary and try to explain the availability of treatments, the types of treatments, the side effects available to the patient in a way that the patient can understand. And in my experiences of attending different support groups or conferences or seminars based on targeting testicular  or prostate cancer patients who attended those events so that they could find out more information about their diagnosis and their treatment options, I found that many of them came out of it saying, that was so nice, you know, I finally can understand exactly what the doctors are doing, what may or may not happen to me. I now have this artillery of information that's going to be useful for me should I need it later in the future or even that will help me make my decision more, well, make a better decision because it's more informed. And I feel that if we, there should be more involvement of the patients within that scope because it helps alleviate a lot of the unnecessary stress, but also I think that there's a separation between what the doctors know and what the patient should or shouldn't know. And when you involve, especially in testicular or prostate cancer, because so little information is readily available and awareness and promotion is far and far between especially in other parts of Europe that isn't the UK, that it's really useful to have that available to the patients.
18:49 | JOYCE | Interesting. Yeah, that's very good. And I think understanding what the diagnosis is or what the outcome could be, I had that same experience when I had thyroid cancer at 25, I thought I was going to die and I had a very localized kind of cancer and the night before I went home a female medical student came in with her textbook and sat down and showed me the picture and explained everything to me. And it wasn't until she did that, the surgeon couldn't do it. and it's, you know, it's everybody's got different skills and, but she helped me a lot. And it's like what you just said of being able to understand in lay terms what someone's explaining to you.
19:34 | DEBORAH BEKELE | So, yeah, and I find that sometimes in the consultations, of course, again, the practitioner, the urologist remembers treating the man or the men, they don't have time to go to get into the nitty gritty of exactly what's going to happen. It's more about, okay, so these are your options based on your test results. For example, this is what we can or cannot do. And so the patient goes out thinking, well, I don't really, I don't know if I really got any more information than I had going in. And I found, specifically when I attended a particular prostate cancer seminar that was given by urologists, but was geared towards the patients, they showed an actual video of the surgery. And I thought that, you know, most people, most of the men were just going to be, it was quite graphic, you know, because it was a live surgery. And I was expecting a lot of, you know, bad or negative reactions. But in fact, many of them, when I interviewed them afterwards, were very grateful that they could actually see exactly what was going to happen. And they felt less afraid going into their surgery themselves. And I really was shocked actually, I thought, oh, wow, I mean, maybe that is it, maybe having more information is useful. And it seems like something that's so obvious when you say it. But sometimes people, I think we take this assumption that because there's a stereotype that men don't really, are not proactive about their care or their health, or they wait until the last minute to go get treatment or go speak to the doctor about something that's wrong with their bodies. And when in fact, and it is sort of out of sight, out of mind, the less I know, the better. But in fact, I saw that that was actually the reverse, the more information that they were provided with, the better that they were able to understand and cope with their treatment and their diagnosis.
21:25 | JOYCE | So I think that makes sense, especially for men and their testicles. I mean, if you have to have one removed, then it's like, what's going to happen to me? And I think seeing it as you just described could be very helpful or would be helpful. Sure. Yeah. I know you're still recruiting participants for your study. So can you tell us how people can find you, contact you if they want to participate?
21:48 | DEBORAH BEKELE | Sure, they can. The easiest way for anyone to contact me is through my Proteca, my studies’ Instagram account. And that's the underscore igma. And they can direct message me on Instagram, or they can also email me at Deborah dot Bekele at URV dot cat.
22:04 | JOYCE | Okay, that's wonderful. And you are via your university, correct? Just I did not mention you were in Spain. So I wanted to call that out, because I think it's wonderful that you could join us. So yeah, I know I was quite surprised that you reached out. Okay. So I know the last question I have is one that isn't fair to ask you, but I'll ask you anyway. When do you have an idea of when you might be done with your study? And just I'm asking because I'd love to have you come back when that's done at any time and tell us about your results.
22:59 | DEBORAH BEKELE | Sure. I tend I'm hoping to submit by the end of this year. So sort of mid December. Fingers crossed that everything goes through. But yeah, my submission date will be then and then it'll be up for revision and the whole post submission process for a doctoral thesis.
23:18 | JOYCE | Okay, so I'd forgotten about that. So that's additional time. But the fact that you get it done, I think is the big thing. So at least I would think so. But well, I again, appreciate you being here, Deborah, and sharing all of this with you. Thanks so much for joining me today on Don't Give Up on Testicular Cancer from the Max Mallory Foundation. We have a website and it's at maxmalloryfoundation.com where you can learn more about testicular cancer, donate and also send your ideas for guests on the podcast. And for spelling Mallory is M-A-L-L-O-R-Y. Please join me next time for Don't Give Up on Testicular Cancer.


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