Black Men's Prostate Cancer Support Groups

Reggie:
“The landmark of political, economic, and social history are the moments when some condition passes from the category of the given into the category of the intolerable.” This is a quote from Sir Jeffrey Vickers on the goals of public health. For far too long, racial and ethnic disparities in cancer have been tolerated and accepted, and we must decide that one’s race, financial resources, or where they live do not determine how they manage a cancer diagnosis or how well they can navigate the cancer care delivery system.
Hello. I’m Dr. Reggie Tucker-Seeley, Vice President of Health Equity here at ZERO Prostate Cancer, and I’m joined today by Mr. Kris Bennet, the Director of Health Equity, Community Organizing, & Engagement here at ZERO.

Kris:
Hey everyone, I’m Kris Bennet, the new Director of Health Equity here at ZERO, and I’m really excited to be part of this health equity team. I started in this current role in March of 2022, but both Reggie and I are actually relatively new to ZERO.

Reggie:
Yeah, that’s true. The health equity team here at ZERO is brand new. I joined the organization back in September of 2021 in this newly created role of Vice President of Health Equity with the goal of developing and implementing the health equity strategy for the organization with a specific focus to reduce racial and ethnic disparities in prostate cancer, and given the size and scope of the disparities in prostate cancer for black men, this population is where the health equity team is initially focusing.

Kris:
Yeah, so you know I’ve thought about this quite a bit, and I know we’ve had some conversations, and I think when we generally hear the term “health equity,” it can mean a lot of different things to a lot of different people; and, just as an example, if I were to say “stand against racism” or “stop racism,” I think most folks would know or have a general idea, at least, of what that meant in an interpersonal way, and so I think it’s really important that we continue to define what health equity means, and I think that’s why I’ve loved that we’ve done that here at ZERO as an organization. And, you know, I think one thing that I appreciate about that is that, outside of the definition piece, we’ve kind of got everybody to agree on that. So at ZERO, similar to the definition proposed by the American Cancer Society for cancer, generally health equity means that everyone has a fair and just opportunity to prevent, find, treat, and survive prostate cancer, and as an organization we’re committed to finding ways to eliminate prostate cancer for anybody with a prostate; but in order to achieve our mission to end prostate cancer, we’ve got to zero out racial disparities by eliminating the gap between racial groups and prostate cancer, especially between black folks and other racial groups. But prostate cancer is just one of the many health conditions that which black men face health inequities and health disparities, right Reggie?

Reggie:
That’s right, and unfortunately across several health conditions, black men fare worse than other racial and ethnic groups, but especially compared to their white counterparts. For example, the life expectancy for black men is 74, and it’s over four years less than it is for white men, which is at 78.4, and in addition to diseases, such as heart disease where black men have a 1.3 times higher death rate, a two times higher death rate from diabetes, and a 1.7 times higher death rate from stroke compared to white men, and similar disparities exist for prostate cancer, where black men are over 1.5 times more likely to be diagnosed with prostate cancer and over two times more likely to die from the disease.

Kris:
Wow, that’s pretty disheartening to hear, and honestly those differences are just unacceptable.

Reggie:
They are indeed, and we here at ZERO have a project to address the disparity between black men and other racial and ethnic groups called the Black Men’s Prostate Cancer Initiative, and this initiative began at UsTwo International, the prostate cancer support organization that merged with ZERO back in October of 2021, and with funding from Pfizer’s accelerating health equity grant. The goal of this initiative is to increase education and awareness about prostate cancer in the black community, to provide support group resources to black men managing prostate cancer, and to provide a pathway to ZERO’s many education and support services. And so, we’ve invited the leaders of the Black Men’s Prostate Cancer Initiative Support Group here to chat with us today to discuss their experiences as support group leaders for this virtual support group and also to announce that we will begin having in-person support groups soon under this initiative beginning in the Atlanta area. So, I’ll turn it over to you, Kris, to introduce our guests today.

Kris:
Yeah, I’m super excited to introduce both of our leaders here. Both of our guests have had phenomenal background, experiences, and are just honestly flat-out talented men. So, with us we have Hakim Asadi. Hakim is the founder of Beyond Living. He received his Master of Social Work degree from the University of Albany, and some of his experiences as an LMSW include working with individuals living and coping with HIV and AIDS, mental health, and substance abuse. Hakim is licensed in New York State as a certified mental health first aid trainer. He’s also a Bridges Out of Poverty trainer, a life coach, and is an integral part of the New York Model for Batterers program, which addresses the issue of intimate partner relationship violence. We also have Marcus Jones. Marcus is a licensed psychotherapist, certified alcohol and drug counselor, as well as a certified anger management specialist. He earned his Master of Science in Mental Health Counseling from the University of the Southwest and also earned his Master of Business Administration as well as Bachelor’s degree in organizational management from Ashford University. Marcus has worked in the field of mental health for about twenty years and in the last seven years has provided counseling services for individuals, couples, families, and groups with experiences ranging from community counseling to inpatient treatment settings. He specializes in addition, anger management, and men’s issues. Thank you so much, both of you, for joining us.

Hakim:
Yeah, thank you for having us. This is a great opportunity.

Reggie:
Let’s dive in. We have a series of questions that we have for you guys that we wanted to talk about, and so I’ll get us started, and you each can answer the questions that we posit. So, we’ll start with: before joining the Black Men’s Prostate Cancer Initiative as support group leaders, were you aware of the disparities that black men experience as they, or we, navigate the healthcare delivery system generally and in prostate cancer specifically?

Hakim:
So, uh, I would say yes. Specifically to prostate cancer, no, but generally absolutely. Much of my work was centered around health equity and addressing health disparities and especially in the behavioral health sector, but we both know that healthcare and behavioral health kind of go hand-in-hand. And so, it was evident, but I would always be the one asking the question like, well, why black men or why, you know, black people? Why are the disparities so high and, you know, you get your general answer of, just, you know, health and access and other things without taking into account social justice issues and oppression, and I found it disheartening to constantly hear the numbers without an explanation behind it. And so, coming into the work here – working with Marcus – no, I didn’t know specifically to prostate cancer, but I was not surprised, and so I think this is an initiative that’s important, and I’m sure we’ll get into it a little bit later as to how it just lands and how it’s relevant to the work that we’re doing, but yes.

Marcus:
Very similar to Hakim, I was very much aware of the health disparities among black men, but when it came really down to the condition in itself, the exacerbation of the condition, and how the condition affects black men more so than their white counterparts, I would have to say I didn’t have that – I didn’t know that in-depth information, and so just getting that level of education was eye-opening for myself, and, just on a personal level, just receiving that information. And so, for me, it’s just been quite an educational journey, and so I’ve had that benefit of being able to receive that education, being a support group leader.

Reggie:
And, so, you both kind of raised the point around, you know, you may have known that these disparities existed but not necessarily in prostate cancer specifically, and it seems – and this is kind of related to that quote that we started this sessions with – that, you know, I think oftentimes these differences are just accepted, and honestly that’s one of the reasons that I decided to join ZERO, because I was just so tired of going to cancer conferences, going to healthcare-related conferences, and it’s the same discussion. Men who look like me, men who look like us, have worse health outcomes, and it’s across mental health outcomes. As you mentioned, it’s across physical health outcomes. And so, we as a society have to decide that this is no longer acceptable, and that’s one of the things that the Black Men’s Prostate Cancer Initiative is trying to tackle.
My next question is about the quality of care that people receive, and we know that the quality of care can differ by place – by, you know, if you live near a big academic medical center or you have access to good quality care because you’re close by. Have you noticed any differences in care experiences described by the men in this group depending on where they live because – oh, I guess I should mention our group is virtual, so we have men participating in this group all over the country in every time zone, and so they lived in various places. So, have you noticed men talking about or describing their care differently depending on where they live?

Marcus:
I would even go as far as to say not men just all over the country but all over the world. We’ve actually had men join our group from Jamaica and other parts of the world, and so you do see a range of disparity not just because of the geographical location but when it comes from an economic standpoint, you see the range of – we have a range in a very diverse group when it comes to those levels of care that they have experience and that they’ve shared. You see a vast difference in the information that they received, and it’s – just to sit there and experience the conversation of the different things that they were told by doctors. Some was able to get second and third opinions; others were not able to get that second or third opinion, so they had to make a decision right then and there with the first, and so some may have felt like, you know, they may have made a different decision had they listened. And then you’ve got some who are just entering or just recently diagnosed and are able to receive that information. There are others who you may have thought that they experienced that disparity but were privy to programs and information that they were able to relate to others within the group.

Hakim:
And I think the nice thing about that is, because it is a group, they can exchange notes, right? So, you have folks who have had good quality of care, and they had experts and they had different opinions, second and third opinions as Marcus mentioned, and then you have those folks who don’t quite have access to that, but they’ll ask their peers questions like “what should I look out for? What should I be looking to ask about treatment plans?” And it’s really nice that they can exchange notes in that way because it also interrupts the narrative around “we don’t talk to each other.” When it comes to health, when it comes to these vulnerable topics, we don’t generally have a space where we can talk. And so, having this support group, we see that every time we come together. And there’s a level of vulnerability, and there’s a level of “I want you to know that this is my process, this was my journey; these are the things that you might want to look out for if you just got diagnosed. I’ve been diagnosed or been in survival; I’ve been a survivor for a number of years, and so this is what happened.” And if someone else mentioned something, another peer would say “well, that wasn’t my journey, but if you’re new to this – if this is a new diagnosis, maybe this is something that you should look out for,” and it’s really nice to see black men come together in that way.

Reggie:
Yes, I definitely want to touch on that issue of sort of what the men are getting out of it, but before we get there, I want to talk about something that Marcus mentioned around the different – it’s not just about geography, it’s also about resources and the differences in resources. So, access to and they quality of cancer care might differ depending on the resources you have available, the type and quality of your insurance, how much you know about the process. I often tell folks I research about healthcare, and when I have to enter the healthcare delivery system I get confused. How much do people know about the healthcare delivery system and the cancer care delivery system and their economic resources that folks can bring to bear as they’re navigating cancer care. How have those kinds of topics come up in conversations in the group?

Hakim:
I think, as Marcus mentioned, the diversity of the group is interesting to see, because folks don’t have the same experience. I’ll give you an example: someone in the group has a history of substance abuse and will often mention his quality of care, and just access to quality of care has been trying. And other people in the group will say, “well, no, my experience was great; I’ve had, you know, second and third opinions, and I could talk to my urologist, and I can have an upfront conversation,” and then you’ll see the duality of it – how resources and money gives you certain access, but then if you have a “troubling past,” you get pigeonholed in a certain way. And I think that’s what that one member was really honing in on, saying “because I have a history of incarceration and substance use, my experience was this.” It was just – I think it brings up a good conversation because it allows people to ask more questions; it allows people to really reflect on “well, do I have good quality care? Maybe I should start asking questions or maybe I should bring my spouse to have a sounding board because of the issue of health literacy.” You know, if you’re talking all jargon in hospital language, I may not understand what you’re talking about. So, let me bring somebody. Let me have a social worker in the room. Let me know what resources I do have access to to help me in this process.

Reggie:
I mean, you raise a really great point, and in public health we call those resources “fundamental causes” because across health conditions, they’re the things that we can bring to bear to help us protect our health; so, those things are money, power, prestige, and beneficial social connections. And if you have those, those are things that you can bring to bear that are health promoting and can also help you navigate the healthcare delivery system. If you have fewer of those, then it’s made more challenging.

Marcus:
Just to piggyback off of that, even in those conversations it was amazing to see how – to Hakim’s point earlier of sharing notes – there were men in the group who were not even privy to certain treatments or levels of treatments that they could get, and a lot of them were just told by a physician that this is the level of treatment that I recommend and this is what you should have. They were moving toward that level of treatment, but then just getting that information of those different levels of treatment, like wow, so you could do it, there’s a laser or then there’s other invasive approaches or you could just monitor. And so, a lot of these guys were not privy to that information, and just seeing how it help to change their outlook and provide them with the information they needed just so they could take the best course of action. For me, it was a good experience.

Hakim:
And then much of that was location, right, so if I’m connected to or located near a college that’s doing all the research and doing these things, I could get connected to more innovative ways of treating prostate cancer. So, it actually had a lot to do with where I’m located but also resources, and we have folks who are still newly diagnosed and still processing a lot of – just processing it, right, just mentally, “how am I conceptualizing this?” And I know we’ll get to it – I’m sure we’ll get to it – but it’s interesting. His line of thinking and his questions are very unique to his particular journey but also his location and what he has access to. So, he’s asking all the questions to make sure he can bring it back to his team of care to see if it’s not here, how do we get it?

Kris:
That leads us to our next question. So, I know that both of you have had experience running groups and facilitating groups. What would you say was the most surprising for each of you in leading this particular group?

Marcus:
For me, I think it is the level of willingness to be vulnerable was surprising to me. Just wanting to – just experiencing a level of vulnerability is an issue among men, more specifically [it] has been an issue among black men because we experience so much when it comes to oppression, dehumanization, humiliation, and things like that. We don’t want to feel that because we don’t want to be vulnerable because it’s a sign of weakness, and so just to be in that energy of experiencing these men willing to be vulnerable within a group was surprising to me.

Hakim:
And I think to add to that, the group cohesion coupled with the vulnerability – they jumped right in and are supporting one another. And so, with group dynamics, usually – Marcus correct me if I’m wrong – there’s a forming stage, there’s a norming stage, and then there’s, like, a storming stage where there’s, like, a little bit of tension, a little bit of, you know, someone trying to show that they are the person in the room. In group dynamics, you have different personalities that show up, and they show up strong sometimes. But here, the group cohesion from day one was really interesting to watch it unfold in a way that’s uniquely supportive to one another. So, based on experiences, based on newly diagnosed, survivor – it’s there, and it’s a community which I think is unique to – maybe it’s not unique, maybe I’m biased because I’m black – I think it is something that is a pillar within the black community, right? And so, to see and to hear people talk about their most vulnerable states of their lives and to get support from one another is really to see it unfold.

Marcus:
The one thing that I always say is – even doing group therapy – you know you have a good group, a therapeutic group, when the individuals within that group are validating each other. That’s what we have in this group. We have a lot of individuals validating each other, and, believe it or not, we have a lot of men in the group who have spouses, and so we have very few who don’t have a spouse, and just the support that they wrap around those individuals who don’t have a spouse, you may see a little bit more of moments of despair, having those in-depth or deep conversations, and just the level of support and validation that comes out of that group is powerful and amazing to see.

Reggie:
And I would say, too, I’ve had conversations with both of you about the group, and those conversations dispel all the things that folks say: that black men don’t share, black men don’t want to come to this kind of group, and the community that you two have helped to build here has been a really important component for the Black Men’s Prostate Cancer Initiative. You have mentioned your background in leading groups and what you have historically seen in leading groups. I share your background in mental health. I have a masters in counseling and family therapy, and I’m always grateful to see those of you who are actually doing the work on the ground because I was not cut out for it, so thanks to those of you that do it. But I’m curious, because we do have other support groups here at ZERO that aren’t necessarily led by licensed mental health practitioners, so how does your background in mental health inform the content and structure of the support groups that we have here in the Black Men’s Prostate Cancer Initiative?

Hakim:
I would say – I’m looking at Marcus, I didn’t know if he was going to go first.

Marcus:
You know what, I was waiting on you, because if you don’t say it I’m gonna go ahead and say it.

Hakim:
I think, foundationally, it’s the support, because we’re trained to create spaces of empathy, and we’re trained to create those spaces of authenticity, and I think – I don’t know how other groups, how they’re run or how it happens – being two black men, I think that also adds a particular value in addition to being mental health practitioners. I think we know the dynamics of group work, we know the dynamics of emotional wellness, and so even when emotions kind of come up, I think Marcus and I were a little hesitant of going down that road with them because we didn’t want to come in like “oh we’re the therapists of the group, so let us do this.” It was really like – because we know group facilitation – the group members facilitate the group; we just help guide it when it’s necessary. But I think because we came in and were very open and very honest, like we’re not trained in prostate cancer, we don’t have the experience, but we are mental health practitioners who want to support, and if we don’t know something, we’re not going to pretend that we do, but what we’ll do is go back to ZERO and get the information, have a guest facilitator, do what we need to do so you are well-informed. But we’re here to support you in this process.

Marcus:
I think when it comes to the groups, I don’t know if you could ever avoid discussing emotion. I don’t think you can ever avoid discussing stress, depression, and things like that in the group, and so that’s why it made the experience much more rich. And having practitioners in the group, when they express moments of despair and vulnerability, having just us – myself and Hakim – being trained in dealing with those things – and it doesn’t have to be us – they opened, in those conversations, they opened up their own wounds, and so just having a practitioner there to close that wound. Even when we had speakers come in and speakers that specialize in different things, the great thing that they had was they had a speaker who specialized in mental health. Hakim did a training on emotion, and he went through and had a discussion on emotion, and it created this very healthy discussion of “what did you feel? What did you experience?” That question that always comes up that most of us – a lot of us – deny having is just “why me? Why did this happen? How did this have to happen to me? What am I going to do from here? How is my sex life going to be from here?” You know, all of those deep questions that they had that created some sort of stress or depression. They were open enough to come out and have that conversation, and, again, any wounds that opened up we were able to help facilitate the energy in the environment to close those wounds.

Reggie:
So, it sounds like it’s just great to have the space to talk about those emotional issues, and if you had questions about prostate cancer specific content, you know ZERO is here. We have our education materials, all of our ZERO360 program to help with navigation, all of those kinds of things, but for the emotional issues it sounds like it’s great to have the mental health practitioners there to create that emotional space.

Hakim:
It helps to normalize the emotional experience, and I think we do – when we see that, we call it out, we talk about it, and we invite folks to lean into their emotions even if it’s just a question, like a reflective question, because there were talks around stress and oppression and, you know, we’re not naïve to oppression, right? So, we had a really good in-depth conversation about how that impacts not only our mental health but our physical health, because our stress actually manifests in our body, and we took time to actually talk about that because that’s also important to note when I’m in treatment – that my mental health, my emotions, and my physical health are all interconnected.

Kris:
I think that kind of leads us to this next question, which I think we’ve kind of alluded to it. We’ve touched on vulnerability, we touched on community, the validation breaking down the stigmas that are kind of existing in our community, but what do you think the men who participate in this support group are getting out of this group?

Hakim:
Support.

Marcus:
Yeah, I was gonna say the same thing. Support.

Hakim:
And I think support in a way that they even talk about of being black men supporting one another.

Kris:
Can we talk about that a little bit more?

Hakim:
Absolutely. They talk about it from the lens of “I got this diagnosis, and I felt like I couldn’t talk to anyone else about it, but I know there are other people who are experiencing this, but we just haven’t talked about it outside of the group.” And so, someone has mentioned family members that they didn’t get a chance to talk to about it, friends, and so this gives a space for practicing courage, and we can see it because of the feedback of “you know what? I went back, and I talked to people at work about it.” Or “I went back, and I invited some of my friends.” And we have someone who is very vocal about expanding this – expanding this movement – and I think it’s an opportunity to practice that courage of “I won’t be judged if I talk about this; I can actually address the stigma that I may have or that other people may have, because I get to talk about it. I get to talk about this and this experience with black men in this group.” And so, I think it’s an environment to practice courage.

Marcus:
And then what better way to just be able to practice, learn and practice, the linguistics of emotion than to be in a group and be comfortable to express. This is not just an experience for prostate cancer, but these men are potentially learning something that they can use for the rest of their lives to be comfortable and to be able to express yourself when you have those emotions. For a man to be able to say “I’m hurt” – for a man to be able to say “I’m weak,” and not just in that moment of when you have some sickness or disease but in moments of when there’s issues in relationships, when there’s financial issues, and things like that. But I think that this is not just for prostate cancer, but they pick up a skill that they can learn or they can utilize for the rest of their lives.

Kris:
I think that’s a great point as well, and coming from somebody – I’m a black man, and just hearing you say those things is very atypical of what I, even myself, and I’m a fairly young person, but hearing those experiences is very atypical of what I’ve experienced in terms of just being vulnerable, being able to express a weakness, especially in the black community, and I think it’s just that from the time that black folks got to America, we just were kind of taught to not express weakness, so I love the point that you actually mentioned that it’s a life skill, right? Like they’re picking up life skills from this group as well.

Reggie:
Well I think, too, one of the things that we had talked about, just the four of us before getting on this podcast, is the few spaces that we as black men have to talk about many of these issues. So, does this group sort of provide that unique opportunity to talk about what it is like being a black man, what is it like being a black man navigating and managing prostate cancer? What is the secret sauce to this group? Is it just that, that it is a space that black men can get together and talk about these issues?

Marcus:
So, we have had men that have stated that they’ve crossed over to our group with the reason of “I’m glad to be in a group with people that look like me that I can share this experience with.” A lot of them attend a group because it encourages them to come back, and I didn’t mention it earlier but another thing that I was surprised about – because when we first started this thing, we were all just questioning, right, because whenever you start any type of group or committee, typically they say you might only get ten percent consistent – and sometimes lower than that – you might only get a small percentage of individuals who may regularly attend. But we have had a great turnout consistently for this group, and it’s growing, and we see a lot of new men come through our group all the time, and the one consistent thing we hear is “I’m glad to be in a group with individuals that look like me and that share my experience.”

Hakim:
And I think there’s a particular wall that we can let down, because I’m in a room that people look like me. There’s an unspoken commonality around community – my experience – that I don’t necessarily have to explain the details of my being. I think that’s important, and that might be the secret sauce, because now I can just be without having to explain my being, and I think in other spaces we’re constantly having to choose words or maybe be on the defense or let me not say this because some folks might take it this way; I think that’s a barrier that we don’t necessarily have in this group because of that.

Reggie:
So, it sounds like we can show up as our authentic selves in this support group and not have to worry about any filters around race issues that helps to create the supportive environment that you’re describing. So, my last question is is there anything you’ve learned about the healthcare delivery system, the cancer care delivery system, or managing prostate cancer by black men by serving as leaders of this group?

Hakim:
Yeah, I think it informed some of my own practice as a therapist and just asking certain questions when I’m working with black men around healthcare and around a space of vulnerability, because in therapy this is your space to be your authentic self. I think if you don’t have a space to talk about healthcare, therapy is the space to at least check in on it, and so I think it has informed me on being intentional on that because, again, I didn’t know that for black men we should be looking at this around forty; I did not know that, and so that’s something that’s important to talk about. And in spaces am I raising awareness, am I providing education, am I talking about the stats? Even if it’s with women, because if they’re informed then they can inform their partners or their brothers; it’s important for this education and this information to go out but also understanding that, yes, we are still navigating a healthcare system, and, yes, there is still mistrust, and, yes, this is definitely still a thing; but the more information, the more we can practice self-efficacy.

Marcus:
Just to piggyback off of Hakim’s sentiments, it’s taught me to ask that questions. One of the things you deal with, especially when you’re counseling men, is fear, and in our health, there is a fear. We are known to not go to the doctor, we are known to not want to seek any sort of help, but am I doing – as a therapist – am I doing an assessment, and so that question of health may be a good question because it may be a level of fear and anxiety surrounding around health. That may be something that might need to be discussed in therapy. From that standpoint, it has very much enhanced the way I practice as a therapist.

Reggie:
So, I have to say, we had a conversation before this podcast, and when you both mentioned that to me, I knew we had to get it in the podcast because I think, as we’re building this Black Men’s Prostate Cancer Initiative, that was such an insightful component of us building this initiative that we didn’t even think would be a part of it – that is, by having licensed mental health practitioners service the support groups, it would not only help the men that are part of the support group; it’s also helping the support group leaders, and then they’re taking that information back to their practices. So, it’s really just a great spillover effect of the support group program. So, we’d like to take this time to thank Hakim and Marcus for joining us today for this discussion about the Black Men’s Prostate Cancer Initiative Support Group, and I think you, Kris, for joining me today as co-host.

Kris:
And, as we mentioned earlier, we’ll begin in-person support groups under this initiative; they’re gonna be starting in the Atlanta area, and, if you have any questions about this initiative, please email us at healthequity@zerocancer.org. Thank you so much for joining us; we appreciate the both of you.

Hakim:
Thank you for having us.

Marcus:
Thank you.