Russell shares his experience with hormone therapy after being diagnosed with metastatic prostate cancer, including what influenced his treatment decision and how he adjusted to life on therapy. He discusses managing side effects such as hot flashes, fatigue, and muscle loss, while emphasizing the importance of staying active, maintaining perspective, and leaning on loved ones for support. Joined by his medical oncologist, Dr. Pedro Barata, Russell offers practical advice and encouragement for other men beginning hormone therapy.
Dr. Pedro Barata:
Hello and welcome to this wonderful patient story. I'm joined by friend and patient Russell Fry, with whom I have a relationship over two years now. Thank you so much, Russ, for joining me.
Russell Fry:
Thank you, Dr. Barata. Good to see you.
Dr. Pedro Barata:
Likewise. So we'll be talking a little bit about medical treatments that we use for prostate cancer today. But before we do that, I would just like, if you will, just tell me a little bit about yourself. Where are you coming from, your family, what life looked like before I actually met you, if you may.
Russell Fry:
Pretty normal. Just a small town, married. Been married almost 30 years. Three kids, wonderful kids. Worked same job, 25, 30 years. Just trudging along, just blessed. Everything was great and relatively healthy guy, always had good checkups, never really had any concerns at all. And then had a couple of issues. And a couple of months after that we met each other and things were a lot different than what they were before then.
Dr. Pedro Barata:
Thank you for that. You do have a wonderful family. And you're right, I mean, things were great until suddenly they were not that great anymore, right? You start having some symptoms that trigger checking PSA, which was elevated in the teens. And then you end up getting a biopsy. You were told that you had prostate cancer. And when we got the scans, we found disease in other places of the body. So you're pretty much found with Stage 4 disease or advanced prostate cancer to begin with.
So I do remember when we met, we talk about a lot of things, and then we'll talk about the treatment, right? You wanted to, rightful so, understand is this treatable? Can we put it back asleep? Can I go on with my life, right? So just for context, so when we find out about the disease being in different places of the body, right, we defined that as advanced prostate cancer, right Russell? And the backbone of the treatments that we use in that context is to lower testosterone levels first.
It's known by different names. It goes by different names. Castration is definitely one of them and probably the horrible name to coin it. We call different things, androgen deprivation therapy, hormones, ADT, testosterone suppression. And the reason why we do that is because testosterone is going around our body and it gets inside the cells. And it tells the cells to replicate more and thrive and grow and proliferate. There's a receptor that the testosterone inside the cells talks to, and that that receptor tells the brain to do all those things, the brain in each cell.
And when we lower testosterone levels, then the signal gets suppressed and the cells kind of go dormant. And we actually found ways in the last several years to find ways to optimize that inhibition, that signal. To inhibit that signal even in a stronger way. And we do that with oral medication for the most part and they basically act on that pathway. And by doing so, you're able to keep the tumor asleep for a longer duration of time. And that's basically the treatment you've been on.
So that's the reason why we described this combination regimen of lowering testosterone levels and also blocking that receptor of the testosterone or blocking production of testosterone outside where it's produced the most, which is the testes. So by doing that, we call that treatment intensification or optimization of the androgen pathway inhibition. And the goal of the game is to keep it asleep for longer. And we've been successful at that.
I explained or brought up the concept of lowering testosterone, we call it different names, hormone treatment. Sometimes we use the word castration, which is not a nice word at all.
Russell Fry:
It's a pretty scary word. Yeah.
Dr. Pedro Barata:
Yes. So let me take you back there. When you heard this, when I start talking to you about it and we have a conversation about what it does. And what possible side effects, what is good, what is bad? What questions did you have? And ultimately what made you feel like you should move forward and do it, right? Because it doesn't sound great when we give you a laundry list of probably side effects that you're going to get from hormonal treatment. So walk me through what you felt on your end when we had that conversation, that initial conversation.
Russell Fry:
I guess when you hear it, it's different than when you feel it, you know what I mean? When you guys were telling me all the things that may or may not happen, at that point whatever could stop the cancer is all I cared about. You know what I mean? My quality of life is having life, in my opinion. So I knew you wouldn't take me down the wrong path. I just didn't know how bumpy that path would be, and how to prepare myself for that.
I wasn't worried about not having testosterone or low levels of testosterone. It is what it is. I had testosterone for 54 years or five, so yeah, I had a pretty good run with it. So whatever it takes to keep that cancer sleeping is what you have to do, if that's the path you want to go. If not, then I guess maybe there's other ways to go, but it's the way for me.
Dr. Pedro Barata:
So if we were to think of many men in that similar situation, hearing the conversation around hormones, folks react to it or experience it in different ways. It can be overwhelming for some men certainly. Can you share with me how the approach to those conversations, what would be your advice for men who might be hearing about it next week, soon? What is your advice around what do they need to understand or know going in, or even questions to ask or myths that we want to clarify? What would you say to them to those men?
Russell Fry:
I would tell them it definitely changes you. I mean, your body, like hot flashes, those are a real thing. Don't ever take them for granted. If your wife tells you she's having them, they're real and it's nothing you can't overcome. It's uncomfortable because you're just not used to it. All that, I don't know, what has it been? Two years that I've been on my treatment. I still get them from time to time, but it's very manageable.
Not a lot has changed for me. Your strength goes down so you have to exercise to keep yourself. If not, you're going to lose muscle tone. I don't do a great job of that, but I do what I can. I still work full-time. I have a 40-hour week job that keeps me going. Nutrition, stay up on your nutrition. There's multiple things that you have to do along with the hormonal thing, because your body changes so much that you really got to listen to it and you've got to give it the things that it needs that it was getting from the testosterone.
Dr. Pedro Barata:
And you address some of the adjustments, right? Like you mentioned the fatigue, changes in energy. I mean, hot flushes night sweats can also be common in addition to the muscle loss that you mentioned, and the bone loss. Being aware of the exercise, as you said, is super important. Anything else that you feel like you've changed in addition to be quite mindful and aware about that?
Russell Fry:
For the physical?
Dr. Pedro Barata:
Yeah. Well, physically or mentally, it can also pay a toll from a mental perspective. Do you think you had to change your life to adapt, to cope with the possible side effects from the medications?
Russell Fry:
I don't know if adjust probably is a better word. You have to adjust some things that depending on the life that you had before. I would say before I thought I did enough walking at work, so I didn't do it when I got home. Now I go with my wife on walks as much as I can. That helps me get fresh air and that helps me go out and be with my wife. There's physically some hair loss and stuff like that. It's just it's all icing. It's nothing that you can't do without. It's not a problem.
I put myself into faith a lot heavier and that helps me. It's unbelievable how it helps in my case, helps guide me. It's a lot of prayer before I met you and he put you in my life. And then decisions when it came to this. Meditation, all kinds of stuff. I just threw everything I can at it and hope for the best but-
Dr. Pedro Barata:
And it's quite impressive your positive mindset and I would say the right mindset and the positive energy you always had. So kudos to you. You already talked about not just the physical aspect, but also on the psychological or mental aspect of it. And sounds to me that meditation, reflection, time with the family helped you a lot. So I'm wondering what advice do you have for other men who might be starting hormone treatment as we speak? What would you tell them?
Russell Fry:
I would tell them my personal doctor back here told me initially when I first got diagnosed, and he to this day still checks my charts. He's a wonderful man. But I told him, I said, "When I spoke with Dr. Barata, my first question was, how long?" I don't know if you remember when I asked you, I said it. "Give me my expiration date. I need three years. What do I need to do to get there?" And you said, "We don't talk like that." I'm sorry…
Dr. Pedro Barata:
Take your time.
Russell Fry:
It always gets me because that was the time my wife knew we were in the right spot, because you told us straight up, "We don't do that." And nobody tells my wife that. Nobody says, "This is what we do and this is what we don't do." We have conversations, but you were matter of fact. And I looked at her and after you had left and I said, "Well, what do you think?" And she said, "I love him. That's what you need to hear. We don't set a date because there is no date. Nobody knows."
So the news is hard when you first hear it. Having the right people around you is important too. And my doctor back home told me, he said, because I kept going down to him and I said, "I just wished I knew." And he goes, "Russ, you never know." He said, "What you're doing now is you're living and you're looking through your life through this keyhole." He said, "And you're looking at just the cancer." He said, "You can't just look at the cancer." He said, "There's a million other things out there that could be an issue for you before that. Anything at any time."
He said, "You have to live today for today. Because if you worry about the cancer, it may never be the thing that gets you. You're so worried about the cancer, you're forgetting that you need to live life. You get a heart attack, a aneurysm, a plane falling out of the air. Anything can get you. Nobody knows." He said, "You might outlive everybody. You might go tomorrow. You just never know."
So that was being with you guys up there and then his perspective, I guess he adjusted my perspective. Because I was an absolute wreck. I was just a mess. And he said, "You've got to stop living like that. You're alive. Live." So sorry about that, but it's just a tough one for me.
Dr. Pedro Barata:
Super impactful. So basically what I'm hearing is you want other man, your advice for other man includes many things, but one very important is don't forget to live your life. That's why you go through treatments. You go through treatments so you can live your life with your loved ones, dealing as best as possible with the unknown. But the treatments do work and they do the job and you're able to move on with your life. Does that kind of summarizes it?
Russell Fry:
Yes. Yeah. I was always worried about what ... My particular treatment right now is painless. I'm very fortunate just to do it at home. I get some blood work every three to six months. I get a testosterone blocker every six months. That stings a little bit, but I mean, if it keeps that monster asleep, that's what you got to do. From what I've seen of other people's treatments, man, I'm pretty lucky.
Dr. Pedro Barata:
It's great that you've been in remission and you'll continue in remission, which is great. It will be working together on that.
Russell Fry:
Absolutely.
Dr. Pedro Barata:
So Russell, it's been a pleasure. Thank you so much for sharing this super impactful story. And I'm pretty sure other men who might be listening to you will get inspired and use your energy and force and mindset for them as well as they go through it. So thank you so much.
Russell Fry:
I hope so. I hope I helped one person, I hope. That'd be all right. Thank you. Always good to talk to you, Dr. Barata.
Dr. Pedro Barata:
Thank you.