Jeremy shares how avoidance, despite rising PSA levels and a strong family history, delayed his prostate cancer diagnosis and led to more aggressive treatment. His journey highlights the importance of early screening, self-advocacy, and understanding treatment side effects, including long-term physical and emotional impacts. Now an advocate, he emphasizes breaking stigma, involving partners, and expanding education and screening (especially for Black men) to improve outcomes.

 

My name is Jeremy David Simmons, and the reason why I give my middle name is because I have ventured into the area of being a columnist. I love writing and I've chosen to use my name as Jay David Simmons. And I currently live in the US in New York, and I am working at the EOC, Economic Opportunity Commission. That's an organization that is an NGO, and we focus primarily on trying to help improve the livelihood of persons who don't have the similar opportunities, whether economic and otherwise, and trying to level the playing field in that regard.

I had an interesting journey, if I can put it that way, towards my actual diagnosis. My lifestyles sort of worked against me. I was a health fanatic, health buff, always in the gym, pretty much active, very conscious of what I eat. And I would be like the hub always trying to help and encourage other persons to manage their diet, their lifestyle, get in the gym, take a walk, and so on.

And in all of that, I sort of ignored the fact that, well, two main things. One, my PSA levels were increasing, and the second one is that I did have prostate cancer in my family. My father, he died from prostate cancer complications, and his brothers similarly had complications. And it is not that I hadn't done interventions because I would do my annual medical checkups.

But sort of like the ostrich, what I chose to focus on was another issue that was happening at the time. I was having issues avoiding. So I made a choice, albeit the wrong choice to focus on these urinary things that the reason for driving my PSA up. I had gotten, I did get a scan done and it found that my prostate was the normal size. During those years, I did do a DRE, maybe I think about two, no issues were found there.

And I remember one visit in particular, I visited a doctor who had looked at my father and in his wise counsel to try to encourage me to maybe do a biopsy. He took out the needle that would be used to do the biopsy. It was a huge needle, and I had all sorts of visions of me being laid up on the bed for months and in pain and so on. So I thought, "Okay, I'll check back with you." I never went back.

But the turning point really was in 2018, I was on a project which took me all around Guyana into the hinterlands. And I decided, let me get some insurance. And well, of course, I was age 50 around then and they ran me through a whole raft of tests. And of course, no surprise, my PSA came back elevated. I think it was like around 9 or 10. So the insurance agency said, "Look, Mr. Simmons, we can't do anything for you at this point. You really need to find out what's going on with this elevated PSA."

I was upset, even then, this whole framing of being in denial didn't evaporate. But I reluctantly went to another hospital, did the biopsy. It wasn't half as bad as I thought. And it came back then and that was in March of 2018, that four out of the six samples had prostate cancer cells. So yes, that was the journey getting there. Pretty much seeped in denial in spite of the facts, which were evident.

I'm a bit of a stoic, so my initial thoughts were, "Gosh, what next? And how do I address this?" But a little later down I was like, "Wow, I wonder if I'll be around to see my daughter's 50th birthday." She was, I think, around 22 at the time. And so, I think that was the first, that was about the main area of concern that really jolted me. Will I be alive to see my daughter at 50?

And then I think after that, pretty matter of factly, I told my family and one or two friends who were close to me that this is what is happening and I need to follow the doctor's advice. He advised me to try to get to some first world country to get a second opinion. So that is what I struggled to try to get done.

I chose to come to the US because it's accessible. Prior to then, I probably hadn't come here in about 10 years. And what was also of major concern to me at that point in time, my mom was very sick with kidney issues. And at the time that I was scheduled to leave, she was actually in hospital and we weren't too sure if she would survive. And I, of course, didn't want to leave in that level of uncertainty.

But I remember visiting her and she took my hand and said, "Look, you go and get yourself healed, I'll be fine." And indeed, two weeks later, she was back home. I spent most of the months that I was in the US trying to find the best type of resources, the best type of advice for me to move on and get confirmation on my diagnosis that I didn't find it particularly easy.

And finally, the hospital decided to do a PSA. After seeing the score at, I think by the time it was around 12, we went immediately to do a biopsy. And what was alarming after doing the biopsy, that was sometime in maybe around June, all 16 of the samples came back with cancer cells. So it appeared as though my situation was beginning to worsen even though there were still no signs and symptoms.

My conversation with the urologist at the time, he said, "Look, the cells have gone to the margins of the prostate. It looks as though this thing most likely have spread." In terms of the options back then in 2018, he said, he didn't recommend that I go with the radiation bead implants. At my age then around 50, I stand a good chance of recovering from surgery. So he recommended the radical prostatectomy.

He said once you go in there, we'll most likely also remove the left side lymph node, which indicated that that was nearest to where the cells were on the margins. So I did the radical prostatectomy on 9/11. I will never forget that day, and I know a lot of Americans wouldn't. And yes, it went pretty smoothly, no complications, and spent about three days in hospital, and the recovery journey started after that. So that was the main aspect of treatment that I received there, the surgery at that time.

At that time, I was literally just depending on whoever I got into contact with to advise me. I compare myself now to then, I would say no. But this is in hindsight, I wasn't aware. I literally was only depending on the doctors, the urologist, the oncologist. And I recognize now in hindsight that there's a lot more information that I could have lobbied for, I could have advocated for. I definitely wasn't a very strong advocate at that point in time. So definitely, definitely no, but indeed thankful that the intervention to save my life did occur.

I had no contact with any advocacy group, for example, that I've made a conscious effort to be part of. So that would've been one main factor that may have made a big difference. Knowing which advocacy groups to be part of and learning from men like myself would've walked the journey. And I think that would've guided me.

For example, after the surgery and I was put on Lupron to manage the testosterone levels, and my PSA score was fine, as in where they wanted it to be undetectable. And it was recommended that I do radiation because of the situation with the indications that the cancer had actually spread.

I didn't mention that when the lab results came back, it had spread to the lymph node, the left side lymph node. So radiation was recommended as a precautionary next step. But again, if I were aware that for recovery purposes, I should have really allowed myself more time to heal between the surgery and then blasting my pelvic floor with radiation, that will be another major bit of information that I believe would've helped my recovery process because my PSA was undetectable, so I was not any imminent danger of cancer being in the area.

So I could have been put to monitor it, maybe over a few more months to a year, and then do the follow-up radiation. So I think the advocacy groups in terms of preparation, helping me to be more prepared and meeting with medical team and so on. It's not that the medical team weren't, in most cases friendly and welcoming and so on. And then knowledge about the surgeries after effects and the benefits of maybe delaying treatment options to allow for healing. I think those would've been the major things at that time.

Again, I remember my surgeon, he had his own interesting sense of humor. He did tell me, he said, "Look, where sex is concerned, nothing is going to be spontaneous after this." So that was my first warning or a caution insight as to what may happen next. At that time, I can't recall if anyone really sat down with me and explained the side effects of Lupron. So I was told I would have to go on this drug. I was told the reasons for being on this drug. And I remember a sort of brief conversation about some of the side effects and a lot of stuff was printed out. Can't blame that I wasn't handed information. I got a lot of information on it.

But the gap between after surgery and the recovery and what to expect in terms of side effects, one from the surgery and being on Lupron, I can't say I was engaged in any major way to help me through that curve. Which incidentally is why I'm so interested in helping and coming up with coaching initiatives to help men like myself who after you finish dealing with the hospital and the urologist who really don't have too much time afterwards to manage that process.

And even trying to get help for the mental side of things. Yes, I've had some treatment interventions with psychologists, which really helped me to unpackage some things, but again, they haven't walked the path. So for me, I guess, because of what I call the trifecta of my treatment, the surgery, the radiation, and being on the ADT, that combination together with moving from surgery to radiation in such a short space of time has impacted my urinary system incontinence. Seven plus years after, I'm still battling with that.

Mind you, it has come a long way. I wouldn't say it's problematic, but how to make some adjustments while being on the Lupron, well, I wouldn't wish anybody to be on that. Something like this, I took for granted before. When I was on the Lupron, once I closed my fist like this, couldn't open my fingers unless I took the other hand to prise them open. So joint pains, joint swelling, the hot flashes, and the mood swings. I have 2019 when all of this descended on me now learning to manage it. In previous sharing, I called that the year of cry. I never realized I had so many tears in me.

And I also had the complication of having my mother pass away immediately after I returned to Guyana in October. I had the surgery in September. I went home in October to recover. And I realized afterwards it was as though she was just waiting to make sure that I was okay. She was about, I think, around 82 when she passed. And when I left for the US, she actually learned to WhatsApp. She never used to use that before.

So she learned to do WhatsApp messaging and so on. She would call me. She wrote me a very nice letter once I received, she called me a brave warrior and for Jesus, the healer. And she recommended that I focus on Jeremiah, Book of Jeremiah to strengthen me. And maybe not coincidentally, my name Jeremy is the shortened form of Jeremiah. Yes. So she died at the end of December 2018. And her funeral was in January. And shortly after that, I left to come up to the US for the radiation treatment. So I really had no time to reconcile to really mourn that and so on. And while being treated for the radiation, I encountered my first real spate of depression.

The side effects, the main side effect of the radiation was nausea. I couldn't eat. I literally had to resort to just eating junk food whenever I could just to get something in my system. And fortunately for me, a good friend of mine who I grew up with, he migrated to Canada, and my youngest sister, they visited me just around that same time. And I think that, not I think, I know that made the world of difference, and I was seeing a therapist at that time. But having my friend Harley Davidson and my sister Joanna visit me at that time, that made the world of difference.

And after receiving the radiation again, I returned home to recuperate while still on the Lupron, dealing with that. Trying to get back into the world of work, which I found a bit challenging because I still have to leave to come up to the US to get checks.

So getting back into the world of work didn't happen as easy as I thought. And so that was a bit of a struggle and another dose of depression stepped in, and it's really an interesting thing. I remember while in the middle of it actually being part of a mental health program, I had actually recognized that I wanted to start reaching out. I wanted to start giving back. I wanted to start sharing.

And I chose to be part in this mental health panel. And it made me realize just how challenging mental health issues really are because there I was functioning for all intents and purposes, but in a hole. Fortunately I had a good friend who owned a resort, Pandama Natural Resort, and she encouraged me to come up. Spent some time being there, walk around barefoot, help her with looking after clients on weekends when the resort is open.

And that was a natural bit of healing for me. I didn't realize when the challenges of the depression actually filtered. And I think one of the key things that maybe kept me on balance was my dog. Coco was really such a wonderful companion helping me to balance out a lot of highs and lows. So I would definitely recommend an animal as a companion for anyone going through any sort of recovery trauma, not just medical. Yeah, so those were my main.

I was fortunate that my daughter, who's a physiotherapist took after her grandmother. My mom was a physiotherapist. And she was able to coordinate and help me with some of her colleagues who were therapist, so that I would go for treatment, get hot wax on my fingers, and all the necessary interventions to just sort of ease the discomfort. I didn't want to take any other medication to try to counter the effects of the Lupron. That's enough.

First and most important, when I returned in '22 after COVID, because during that period I couldn't come up for checks. So I came up in '22 and they ran the checks and they were happy that the PSA levels were still undetectable and scans didn't reveal anything to be worried about. So cancer, consider cancer gone.

Going back to what my surgeon told me at the time of the surgery, only to emphasize the gap between telling me that sex will not be spontaneous anymore and not having a clue what to expect until landing in the middle of it. Yes, I have had interaction with urologists who have recommended options for dealing with it. Actually from the time that I had my surgery, they recommended using small doses of Viagra type medication to help stimulate blood into the vessels and nerves and so on.

But it has been an interesting discovery. So prior to the surgery, one of the things, main part of our masculinity is an erect penis, and we associate sex with an erection. We associate an orgasm with an erection. Everything is linked to an erection. So to now have to consider sexuality, not so much in the absence of an erection, but without an erection sort of leading the way to let you know that, "Hey, I am ready."

And to now be in a position where it has become very, very mental, very visual, very situational. If there's too much noise around, that can affect me. If it's too warm, if it's too cold, situational. And I realized in me starting to speak about it, starting to outreach to groups and talk about my experience helped me to walk into some of these experiences that I was now beginning to go through.

I never knew it was possible to have an orgasm with a penis that is not erect. And the concept of a dry ejaculation took some while getting accustomed to, I am happy in a way, this may be weird that I can speak to both sides of an orgasm. I know for a fact an orgasm with a prostate is a lot more intense. An orgasm without a prostate takes some getting used to. It sort of arrives there. And it doesn't take as much out of your body I recognize as an ejaculation with a prostate.

And also recognizing that I get a lot more satisfaction from my partner's pleasure and not necessarily having to be involved in a penile way, if I can put it that way. Exploring other avenues of touch.

So it's been a bit of a rewiring brain-wise, but I know that the masculine part of it, am I still of value? Will I still be accepted by my other half, my partner? The expectation of being able to have intercourse with a penis that is as hard as you may have accustomed it being. A lot of mental changes. But I found speaking about it really, really helps. And being honest about how it has impacted me. I would say that all in all my recovery sexually has been largely positive.

But there are things which I would definitely want to share with men and their partners to help with the initial confidence because that awareness that erection is no longer the name of the game. And to make that transition, it'll vary based on our experience and all these sorts of things. So I would definitely want to be able to help bridge that gap for men.

We have to do a lot more work in demystifying what screening is all about. And screening for the most part is a simple blood test. For most of my brothers, when we hear screening right away, we think the digital rectal exam, that is the number one screening method. But I've been working with my group, BROCODE in particular, to try to let guys know that here, don't think about DRE. We want you to get your head in the game. Just come and get this blood test done. That is the first step. And based on what happens there, it doesn't necessarily mean that there is cancer.

My main message would be to try to encourage more of us to just to understand that this is a blood test, just start from there and not try to overload with too much more information at that point. Let's take it in stages.

That has also been a big part of my recovery strategy, if I can call it that. Before leaving Guyana to come to the US, I had started working with groups in churches, reaching out to companies just to speak to their employees about my journey, always using my journey as my pivot, as my base. And depending on the audience, I would know how much more information, much more detail to get into. Because I found that really helped to heal me, advocating, speaking. It also helped me to learn a lot more about the whole process of screening, getting to the urologist, dealing with the urologist, dealing with the options, making sure you're prepared to deal with that 15-minute window or so that you have with your doctor.

So getting aligned with groups. For me in the first instance, it was Cancer Hope Network early in 2023. And I approached them and they quite willingly took me on board. And I started off with my first mentee with whom I celebrated a little more than a year. Now he's doing quite well. I then got connected to the Walnut Foundation. They're based in Canada, they're focused on Black men, and that's a very powerful team of guys, all of whom have walked the journey. And the depth of knowledge, we make it very clear, this is not a clinical engagement, but the level of knowledge and sharing that we were able to present the persons who are now starting their journey, I really wish I would've been exposed to that.

I got connected with BROCODE shortly after that, and for me, that was really a huge win because that connected me back to Guyana and the work that I was trying to get started there. And I really wasn't very strong in networking, so it didn't really get off the ground. So connecting with BROCODE and being able to now focus on men's wellness back home because BROCODE more of a holistic view on men's wellness, but cancer because of the fact that it is still very much a life threatening disease, we're honing in on that. And one of the areas, or one of the strategies that I've been guiding us at BROCODE is yes, we have the current population of guys who are going to be needing screening, which 40 upwards, those who are going to be in treatment and so on. That's one target group.

But we are also targeting younger guys. Only recently, we visited the University of Guyana to solicit their help by getting the medical students to help us to empower barbers. We want to use barbers as pivots to train them to take blood pressure. And by having these barbers, and we are going to extend it to hairdressers too, but we are looking at barbers in the first instance, trying to create a sort of a hub there. So we can now go there and also do screening.

And also importantly, the impact that COVID has had, particularly on people of color and lower income groups. Because we were quarantined, a lot of regular screening was not done, and not only for prostate cancer, cancers in the whole and other diseases.

So what we are experiencing now through the post-COVID is an increase in prostate cancer. It appears as though it's an increase, an increase in prostate cancer deaths because we missed that critical period of being able to do screening and get those preventative mechanisms in place. So I would say for the next 5 to 10 years, we really, really have to redouble our efforts to try to bring things, get things back under control again.

And that is why I was so happy to get in contact with your organization. And when I looked at the fact that you extended your tentacles outside of the US, I think that's one of the key things that drew me to you. Because as BROCODE, an emerging group, we are still looking to try and build our base. We're still looking to get donations, financial support, and guidance, because I don't think we really want to reinvent the wheel if there're persons and organizations who have been doing this particularly with success.

And I think Guyana is very fertile at this point for a major type of outreach initiative over, I would say, a sustained five-year period. I must say the government in Guyana has done a lot more work compared to 2018, 2019 when I really was diagnosed and so on. There's a lot of visiting teams getting in there now assisting the local medical teams for prostate cancer and other type of cancer supports.

So yes, I definitely see advocating and groups like yourselves, and the Walnut Foundation, and Cancer Hope Network playing a critical role in trying to bring things under control after the damage that COVID has done.

Well, I would take my final words out of the final conversation that we had, where I would definitely want to see prevention as the main tool of choice and awareness. And literally trying to saturate the airwaves with information in a structured way. Because for example, as we mentioned with the PSA, manage how we put the information out there, but it has to be done in a sustained way. I would be more than willing to be part of any group that wants to drive that effort.

Part of the engagement has to be done with partners of men, and I will advocate on that strongly. It's not just the guy who has been diagnosed, it's also his partner. So whatever we put together has to include getting information to the partner.

Because as we are trying to get accustomed to what our body, the changes to our body, our partner hasn't experienced that either. How do they deal with that? How do they relate to that? Do they cut and run? Do we have to go back to school as such to relearn? So yes, so the information, the partnership.

And directly to men on the whole, I would say, do not delay screening. The earlier you can get yourself tested, the earlier you can find out what is happening, it can allow you more options, and that's what you want. It can allow you more options and maybe less invasive options.

 

This interview was produced with the generous support of AstraZeneca Pharmaceuticals