Bite Your Tongue: The Podcast
Did you ever expect being the parent of an adult child would be so difficult? Introducing "Bite Your Tongue," a look at exploring that next chapter in parenting: building healthy relationships with adult children. From money and finance to relationships and sibling rivalry, we cover it all. Even when to bite your tongue! Join your host Denise Gorant as she brings together experts, parents and even young adults to discuss this next phase of parenting. We will chat, have some fun and learn about ourselves and our kids along the way! RSSVERIFY
Bite Your Tongue: The Podcast
Tell Your Kids The Truth: A Dad, Three Sons and What he Wished he Knew
We know this isn’t our usual topic about building healthy relationships with adult children—but when we met Joe Dooley, we knew we had to share his story. Even if this episode helps just one person—it’s worth it.
In honor of No Shave November, we’re taking a short detour to talk about prostate cancer—a subject that affects millions of families, often quietly. Joe, a 65-year-old living with advanced-stage prostate cancer, opens up about his journey from diagnosis to remission. He talks about what he wishes he had known, and why awareness and early testing matter so much.
Joe puts it best:
“Most men know their cholesterol level and their golf handicap, but don't know their PSA level - the key to early detection." (and "normal" is not always "normal")
Joe's story proves why understanding age-specific PSA ranges (not just "normal and "abnormal" is critical for men over 40, especially those with family history or genetic risk factors (and the BRCA Gene matters!)
This episode isn’t just about health—it’s about communication and connection. Joe shares how he’s been open and honest with his three adult sons about his diagnosis and treatment, and how those conversations brought them closer. His story reminds us that transparency and vulnerability can strengthen our relationships—especially during tough times.
And ladies—this one’s for you too. As Joe says, partners and family members can make a real difference by encouraging the men in their lives to get tested and talk about their health.
At the start of the episode, Joe shares a powerful quote that now sits proudly on my desktop. You’ll have to tune in to hear it—but I promise, you’ll love Joe and his story as much as we do.
(note: Joe is not a doctor - this is a personal story from his experience and what he has learned.)
Links: Joe Dooley The Full Story
Huge thanks to Connie Gorant Fisher, our audio engineer.
Email us at biteyourtonguepodcast@gmail.com with ideas/feedback.
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So how to handle it is you've got to remember one is your especially adult children, but even your little kids, I remember when they're little, your your kids feel your emotions. They know, they know no matter how you try to couch it, they know you're struggling emotionally with what's going on. So you just got to be honest with what's going on. They can see right through any anything that you're trying to sugarcoat. I just was very brilliant with them about this is what it is. I've got cancer. This is what my doctor tells me. I know kids that have quit working to come home and take care of their parents. This disease does not require any sort of help. So mostly what you go through with this disease, especially when your hormones are out of whack, it's sort of an emotional thing and all the physical changes you're going through. So it's nice to get the phone calls and how you're doing. And it's really nice that they want to be with you. They'll take the extra step to come and do visits. And I think that's important for kids to know that hey, dad looks like everything's going great. But quite frankly, it might be good to go hang with them because it's nice to have them come around when you're not you're feeling physically not disabled, but just not so good.
SPEAKER_02:Hey everyone, welcome to Bite Your Tongue the podcast. Join me, your host, Denise Gorin, as we explore the ins and outs of building healthy relationships with our adult children. Together we'll speak with experts, share heartfelt stories, and get timely advised, addressing topics that matter most to you. Get ready to dive deep and learn to build and nurture deep connections with our adult children, and of course, when we bite our tongue. So let's get started.
SPEAKER_03:Hello, everyone, and welcome to another episode of Bite Your Tongue the podcast. Thank you so much for listening. Today we're going off track just a little bit. Because sadly, all I've been hearing about lately is cancer, the fight against it, friends facing it, and some even dying from it. And what do we do when we face something like this? How do we fight it or accept it? And in line with the podcast, how do we tell our families, our adult children in particular? Do we expect care from them? Do we expect help from them? There's a lot to consider. So this month, we're marking No Shave November. No-Shave November is a month-long movement to raise awareness for men's health issues, including prostate cancer. And that's what we're talking about today. We're talking about a man's struggle with prostate cancer, but we're also generalizing about our adult children, how to talk to them, how to tell them, and what to expect from them. My guest today is Joe Dooley. He's on a mission to save lives by sharing his own story. At 65, Joe's living with advanced stage prostate cancer. He's in remission from an advanced stage metastatic cancer and is sharing his personal journey because he's learned what he believes can save lives. If your husband's brothers, uncles, or even sons are not listening to this, I would like to suggest that you share this episode. It's so important. And you will believe me once you hear from Joe. So let's get started. So, Joe, thank you for taking the time to be with us today. You have a wonderful story to share that I'm sure is going to be so interesting to all the listeners.
SPEAKER_00:Well, thank you for having me. It is it is important. I'm glad you think it is.
SPEAKER_03:Before we dive into your diagnosis and the incredible mission you've taken on, I'd love to start talking about something closer to the theme of bite your tongue. We hardly get a chance to talk to dads. So I'm going to jump in and take advantage of having you with us. Tell us a little about you as a dad, how many kids you have, and what stage of life they're in now.
SPEAKER_00:Okay. I've been married 41 years. We have three young men at this point, not boys anymore, but men. People ask all the time, how many children do you have? So you mean my adult men that I live with or that I have raised? I've got a 36-year-old son, a 33-year-old son, and a 27-year-old son.
SPEAKER_03:Boy, all boys. All boys.
SPEAKER_00:All boys. And I know from listening to some of your podcasts, how you have psychiatrists and sociologists and psychologists, all these experts, behavioral medicine experts. I'm just a dad with 36 years' experience, but I'm happy to happy to tell you.
SPEAKER_03:Well, I think that's so important. And what surprised you the most about becoming a parent of adult children? And I call them children because they still are, they're your children. Do you think about an obituary? They they always say, and they have six children. They could be 60 years old. They're still your children. Anyway, go ahead.
SPEAKER_00:We still call them our children, but Yeah, okay.
SPEAKER_03:I get it though.
SPEAKER_00:They love to be known as adults. I I think the biggest surprise of this stage of life is quite frankly, how easy it is now. Compared, when you compare it to the for me, the hardest years of raising boys, especially, but kids, is the teenage years. And I'm interested. I look at the baby years from birth to 10 or 11. It's just some of the most beautiful, joyous years, and everything's just so easy. I mean, you might get a tempered tantrum here or there, but the teens are hard. And when you think about the teen years, what a cascade of events are going on, especially in a boy where their risk-taking behaviors are extreme. They have trouble with impulse control and they have these raging hormones. Women too, when the whole hormone shift comes in and then they seek out their independence, you know, you see a whole different person. And I think for parents, you say, What happened to my sweet little baby, my child who loved me, who hugged me, who talked to me, and we had these great conversations. And I think what the surprise, as you talk about of raising adult children, is guess what? That part is there. It's still there. It didn't seem like it was there during the teen years, but it comes back. So for those parents who are battling these teen years, first we got to stop the battle. I would talk about that in hindsight. I would love to have done some things differently. There should never be a battle. But the end result, if all things go as you hope as a parent, that sweet, great person that you had as a in your house as a child is there and comes back again as an adult. You see all the all the good that you always saw in that person who became a little devil for the teen years.
SPEAKER_03:So it's interesting because this is a very different scenario than what most of my listeners say. And I would say for myself too. The teenage years, and I have a boy and a girl, were a breeze. I have found the young adult years the hardest. I don't know whether it's different for mothers or for fathers. That's why it's interesting to hear from you because I think mothers have a harder time separating. And when they do become young adults, they really are on their own. Suddenly, you are no longer center stage in their life, particularly when they have a significant other, a spouse, children. So it's interesting that you say that. I'm glad to hear that. I think probably many fathers feel that way, where the mothers are struggling a little bit more.
SPEAKER_00:What you say is interesting. My wife early on turned me on to Khalil Jabron. I'm kind of butchering his name. I hear people call it.
SPEAKER_03:Yeah, say it again. Say it again.
SPEAKER_00:Some people say Cahill Gabron, but Khalil Jabron.
SPEAKER_03:Cahil Gabron, yeah. Okay, right.
SPEAKER_00:Early on, when they're little kids, she said, I want you to read this excerpt on children. And I've always kept, and I even wrote some down for today, a few of the things that he says there that are very challenging, but we tried to guide both of us as parents raising our children and now adults by the message, which he says.
SPEAKER_03:Go ahead, you can go ahead and read it.
SPEAKER_00:I'll tell you a few. I just pulled out a few things that always hit me hard, and they sound really extreme, but when you put it all together, it makes sense. Your children come through you, but not from you. And though they are with you, they belong not to you. You may give them your love, but not your thoughts. Think of that. Have their own thoughts. And then this one, you may house their bodies, but not their souls. This one has become my sort of my favorite that always hits me that I've got to keep remembering this. You may strive to be like them, but seek not to make them like you. And I think a lot of what this is saying is we are a vessel that allows these souls to be entered into the world as a gift to the world. Their bodies live with us. They are on their own journey. These souls are on their own journey. They have their own thoughts. You've got to let them develop. You're there to help guide and nurture to make sure that their journey is successful. What I think the biggest mistake we make as parents, I see it all the time, and I know I even did it myself at times. I try to fight it all the time. Is we have a vision of what they should be like. And that vision comes from what we are like. And we think, why aren't you like me? Why aren't you gonna be like this? Because we think of ourselves as the way they should grow up and become just like us. Well, guess what? I feel sorry for boys whose dads played football and all they want them to do is play football in college. For example, this is an example.
SPEAKER_03:I know that's a major, but there's little ones like why aren't you living in the suburban house I'm living in? Married at 25.
SPEAKER_00:How could you be interested in dance and music as a boy? Okay, well, yeah, yeah, that's his journey. That's what he wants to do.
SPEAKER_03:Those are absolutely beautiful, Joe, and I'm gonna share those even in print. We all think and know those things, but it's hard to put them into action. I loved those quotes.
SPEAKER_00:This is their journey. Why am I getting involved in trying to change their journey? Let's just enjoy it.
SPEAKER_03:You're 100% right. All right, let's start with your journey. I talked in the intro that it is no-shave November and we're bringing a lot of attention to men's health. And probably one of the main things as you get older, if you're a wife or a partner or whatever, men are always talking about they get their prostate checked. We hope. Let's start at the beginning. We don't have a whole lot of time in this podcast, so we're not going for hours, but I want you to quickly tell people the how you first realized something was wrong, and we'll go from there, okay?
SPEAKER_00:Okay. In 2019, and I want to start by saying the first thing about prostate cancer inside the prostate is it's asymptomatic, but there were no signs or symptoms. I went to my annual physical and had a PSA test. The PSA is the prostate-specific antigen, which are this protein that's put out by the prostate normal cells and cancerous cells, but especially when it's put out by your cancerous cells, the PSA will rise significantly. It also can rise with an enlarged prostate, prostatic infection, prostate prostatitis, which is an inflammation of the prostate. But these significant increases can come from cancer cells or even when it gets to a cancer tumor. I had a PSA in 2019 at age 58 of 4.2. The scale that comes from the lab, most scales will show 0 to 4 or 0 to 4.5 is normal. On mine that year, it said 0 to 4, and I was at 4.2, which was abnormal, but it was sort of considered slightly high, just above abnormal. But I was concerned, and I thought this does seem really high to me. I went back and looked at the portal. You know, I get a portal now to go back on the internet and look at your test scores. I looked at my score from 2018, it was 2.75. So I called my doctor and he had already looked at it as well. But we talked and I said, Look, I'm really concerned because why did I go from a 2.75 to 4.2? What does that mean? Of course, he said, let's not jump to conclusions, but I do want to get you to a urologist. I went to the urologist early October 2019. He said, We're gonna we're gonna do a biopsy. I did the biopsy of the prostate. We don't need to go into the details of that, but no, don't go into details. They go in with an instrument and take tissues from the prostate. That came back as a gliosin-6 prostate cancer. They grade your prostate cancer on a scale of gliesen six to ten, ten being the highest and the most aggressive and most risk for metastasis. Gleason six is the most indolent, low-risk, slow-moving cancer, and that's what I was told. So I was given an option to do what's called active surveillance, which means we can just monitor this. We'll do another biopsy in six months. In hindsight, that was one of the mistakes I made was deciding to do that. But when the doctor's telling you about it, they're saying, you know, you can avoid the surgery for maybe a year, maybe even up to five years, because this is such a slow growing cancer. The risk of surgery are erectile dysfunction, incontinence, and the normal risk of surgery going under general anesthesia. There's a long list. So I said, Well, it sounds good to me. If I can wait, I'll wait. The six-month biopsy came around, and the doctor was in surgery, so it ended up being an eight-month biopsy. I did it two months later than I was supposed to. I came back at a Gleason 7 on the second biopsy, which was intermediate risk. And my doctor, my urologist, called me and said, He's the surgeon. Surgeons want to take it out. He said, You need to take it out. That's my recommendation. But you've got 60 days because we just did the biopsy. Your biopsy's your prostate is too inflamed to do the surgery for 60 days. So during the 60 days, I'd like you to talk to a radiation oncologist and get their opinion on treating it with radiation so you can make the decision.
SPEAKER_03:I want to just say something right now. Had you not noticed the difference in your two numbers from 2018 and 2019, possibly nothing would have been done until your next year later, right? I mean, you were the one that brought it up to your doctor, and he or she said, Yeah, we should look into this, but don't be alarmed. It was your advocacy that got this all going. Do you agree or not?
SPEAKER_00:I I agree, but I I in a way that sounds like I'm throwing my primary care physician under the bus. I I always feel sorry for my primary care physician because I get the blood test results and I get a notice on my phone, blood test results. I open up and read it, and when I talk to him, he had already read it too. So if we were on the same page, but he's his suggestion go to the urologist. But but you're right. What happens oftentimes? Luckily, my doctor said, I'm gonna get you to a urologist. There are a lot of doctors, and I hear this all the time, where as long as that lab result comes back and it says normal next to it, it just gets put in the drug your normal freaking spine. And most men, and this is gonna be one of my main things I want to people to get to be clear on, is that most men don't know their PSA level because their doctor simply tells them thing is normal. And normal is a dangerous word in this in this arena. Before that second biopsy, just as an example, they did a PSA, which was standard, to do a PSA before the biopsy. My PSA went from a 4.2 to a 4.43. That's all. You would expect two little points, right? You would expect that. I've already been diagnosed with Gleason 6 prostate cancer in my prostate. The importance of this part of the conversation is when that lab result came back from the lab, it said on the lab result 4.43 normal. The reason that's important, remember the lab is a computer-generated report. After the blood is spun and tested, it comes back. And on that particular scale, everything up to 4.5 was normal. 4.43 came back as normal. Now think about that. We already know that I have prostate cancer in my prostate, and there's a blood test that says normal. If that doesn't prove to the people listening that normal can be wrong, then I don't know what else to tell you because I was not normal. I already had been diagnosed as cancer. So it's really important to know the number. And then what's most important, and the doctors will tell you now, is to be careful on the increase from year to year. What you're looking for is a rapid increase. Because you could have a 4.0 and have an enlarged prostate and not and not have cancer. And the next year it might be a 4.2, and that's still maybe your enlarged prostate and not cancer. But it but let's say you're a you go from like I did, from a 2.75 to a 4.2, that's a big jump in a year. That's suspicious for cancer. I think that right now the doctors are coming around to a new sort of paradigm shift that anything above a 2.5 needs to be followed more closely because there's a chance that this could be cancer growing. And what we're gonna look for is an increase that they'll probably start doing tests sooner, maybe six months instead of a year later. But certainly within a year, if they see an increase from a 2.5 to a 3.1 or something, then they're gonna do multiple tests to decide whether to go to biopsy and MRI to diagnose cancer.
SPEAKER_03:You usually hear of prostate cancer as an old man's disease. What age do you think men should start being aware of this and really paying attention to it?
SPEAKER_00:The average age for prostate cancer diagnosis is 68. I think that men, this is my opinion as a patient.
SPEAKER_03:I've said you're not a doctor. Yeah.
SPEAKER_00:Everything I've looked into and listened to experts who are now coming around to 40 years old is when we should start the testing. Most doctors are starting PSA testing at 50. I think that's too late. Here's why, because you can get it as a younger man and it's more aggressive. What's really important here is if you have prostate cancer history in your paternal line, your grandfather's father, your dad's brother, so your uncle or your own brother has prostate cancer, you have a 2.5 higher risk of getting prostate cancer at the age between 40 and 50, and a much higher risk of even getting it between 40 and 45. If you've got a paternal line history, you definitely want to be tested at 40. If you're a black man, we have a one out of four chance of getting prostate cancer in your lifetime. So I think if you're a black man, you should be getting tested at 40 because your risk is higher than the white population. But I think what doctors are going to start to do is testing at 40 to get a baseline so we will know if the increase are important. They might see a reading of 0.05 at age 40, and they'll say, okay, you're good. We'll test it again in two years, three years, but at least you've got a baseline. But if they see at age 40, you're at 1.5, I think they better be testing again because remember, at age 40, above a 2.5 is considered abnormal. And if that 1.5 goes to a 2.3, 2.5, and within a year, they got to start being concerned in a younger man, and we should not leave out this younger population just because the average age is 68. We need to be more aggressive and young men who know of their family history on the paternal side, their dad's side, bloodline. Absolutely. Have to tell your doctor and get tested.
SPEAKER_03:As an older man, let's say you're 80 and you get diagnosed. This happened to my own father. You know, he was told, okay, you have prostate cancer, but you're going to die before the prostate cancer does anything. Would you, as an older man, listen to that or should you do something?
SPEAKER_00:I think that that is pretty standard for what the older, older men are told, because in most, you can never say all, but in most people, men in their 80s that get diagnosed, it's a slower growing cancer. And the men at that age have many other health conditions. They're more likely to shorten their life expectancy than the prostate cancer. And a prostatectomy is at least a two and a half hour procedure. Mine took five and a half hours under general anesthesia.
SPEAKER_03:Which is probably dangerous for anyone in their age.
SPEAKER_00:Anyone in their 80s. 70s is a different story because men are so active in their 70s and their and the life expectancy is so much higher. But I think that men in their 70s should definitely think about taking out the prostate, especially if you get it out before it metastasizes, like I wish I did, because then you're cured and you're going to live your normal life expectancy. And when you look at the 70s, people in their 70s, how about what an active lifestyle they have. You want to have an active lifestyle for the remaining up to 25 years of your life. You hope without living with prostate cancer and having to deal with metastatic disease that's going to be treated. You may still live your life expectancy, but you don't want to be living on chemo and hormone therapy and all these different things that you would have to be treated for if you could get it out and just move on and live with cancer-free.
SPEAKER_03:Without going into complete detail, I don't have time to because I've heard your whole story. And I will share the video of your whole story with my listeners, because I think if this is something you're interested, guys out there, you should watch this because he was such an advocate for himself and did such a great job of learning everything about this. So you find out at metastasize and tell me how many years it took then to get you into remission, how many surgeries. Okay.
SPEAKER_00:When I had the Gleason 7 biopsy, you know, the biopsy that came back at that 60 days, and the end of that 60 days or near the end, I had the surgery. November 6, 2020, I had the surgery to take it out. I made that decision because I just decided I'd like to get the prostate out, take the cancer out of my body, and not have to live with treating cancer inside my prostate for many, many, many years. So I took it out, but when I took it out, they found that it had metastasized to a nearby lymph node, and also that there was a margin in the prostate, in other words, a crack break in the wall where the millions of cancer cells got out. So now I have stage four metastatic disease. It had the urology specialist now take over my care. And he said what we're going to do is we're going to do a scan. A new scan had just become available called a PSMA scan.
SPEAKER_03:PSMA. I just want to make sure we get these correct. Yeah. Okay.
SPEAKER_00:PSMA, which is a scan that uses a radionucleide material, the tissue, that will go, that will attach to the prostate-specific membrane of the cancer cell. And this is the PSMA, it's the prostate-specific membrane, antigen. That's what it stands for. And those nucleiides will light up on this PSMA PET scan. And my doctor said, we're going to wait until you have a PSA of 0.25. A lot of the places are doing this at 0.25, some are doing it at 0.5. But I did it and they found the tumor in my pelvic floor and what the seminal vesicle bed. At the time they found it, it was very small, size of a pinky fingernail. And he was very happy that we found it such a small tumor. He felt that we'd have a high success for killing that tumor. Then what I did was hormone reduction therapy, which is they call ADT, androgen deprivation therapy, which is really nice words for chemical castration where they strip you of your testosterone. For me, it was for 18 months. It lasted two years, and there are multiple side effects to that, which is in my talk. Targeted radiation around that tumor, because the idea is that most of the cancer will sit around that tumor. So try to kill all the cells around the tumor and then targeted in the last two weeks, hitting the tumor every time I went in during the eight weeks of radiation every day. But the last two weeks were targeted onto that tumor to like really just to kill it. The reason that they put you on the hormone therapy is prostate cancer feeds on testosterone. Which makes for very successful radiation. Because if you think about it, if you're able to like put all the cancer cells to sleep, and now you're going to go in and bomb them with radiation, it's better when they have it, they're not able to move or get away to other parts of the body, and you can get them while they're just there sleeping. It's just that's sort of the image. And that's the reason they put you on that hormone therapy is to put the cancer cells to sleep so they can hopefully kill them all.
SPEAKER_03:From start to finish, how many years until you got into remission?
SPEAKER_00:So I had the surgery 2020. I waited until 2021 was when we decided it was time to do the radiation therapy started in February of 2022, but at the end of 2021, I had to start the home hormone therapy in October of 2021. I had to do my first shot to take the testosterone down to zero. They wanted that to be like that for a couple of months before I would do the radiation. The radiation started February and went eight weeks. So I went February and March of radiation therapy. And then the hormone therapy lasted. My last shot was in February of 2023. That one lasted till May of 2023 when it was all out of my system. And of course, I thought, well, now the testosterone's going to come back. This is going to be great. My life's going to return to normal. All the stuff I experienced, which is horrible being on zero testosterone. But it took until it took till October of 2023 before I saw my first uh testosterone reading that was normal. It was zero, then it was eight, then it was, it was all these very low levels, then it came up into the 300s, then the 400s, and now I'm into the 700s. So it came back. But when it comes back, the risk is that the testosterone will now those cancer cells that were put to sleep by the hormone therapy might wake up because now they have testosterone to feed on again. I'm at a stage now where I get tested every three months, PSA and testosterone. The testosterone's been rising, the PSAs remain non-detectable, which is a very good sign. I'm in what's called a period of remission. It's a sort of a curative stage, but the doctor says you're never out of it. There's still a chance that you're it's going to come back.
SPEAKER_03:The cancer some little thing escapes somewhere.
SPEAKER_00:And wakes up and starts and uh growing cancer cells and tumors and all that. In fact, I'm next week I'm going up for another PET scan because my doctor's research shows that you could that men who have high testosterone and a non-detectable PSA, post-prostatectomy and metastatic disease, 12% of those patients have cancer cells that are not putting off a PSA reading of how they're forming tumors. So he's going to go in and do another PET scan to see if there are any cancer growing in my body somewhere or a tumor. You know, am I one of those 12% that has this non-PSA producing cancer growing in my body?
SPEAKER_03:How does this how does this feel to you, Joe, on a day-to-day basis? How do you feel? Positive, concerned? What goes through your mind?
SPEAKER_00:I'll tell you what makes me feel the best is the the doctor I'm with is one of the best in the country. That gives me great confidence. The fact that this treatment of that tumor that we found was so successful and that my PSA is non-detectable now gives me great hope. But I do have this concern that it's going to come back and I'm going to have to go through more treatment. I don't I think that'll be horrible. I don't want to go through more treatment, but what I'm hopeful for is a long life with this disease because these brilliant doctors are doing so much every day. The longer that I'm in a non-detectable PSA state, there are doctors waking up every day trying to figure out new ways to treat prostate cancer, and they are doing it. My doctor does an annual review of all the new things that are coming out, prostate cancer treatment. I got to tell you, it's genius what these doctors are doing to extend the life of people with prostate cancer. We're still losing 35,000 men a year to prostate cancer. So every 15 minutes, somebody's dying from prostate cancer. It's real. You can still die from it.
SPEAKER_03:Well, and you're honest, you're lucky. As you say, you have one of the best doctors. A lot of people don't have access to that, will not have access to that. And you were pretty open about the system failing you and you failing yourself. What do you want others to learn from that?
SPEAKER_00:I think I have said that I that the system failed me. I think that's in in hindsight, looking back on it. I think where the failures are in the system is this problem with PSA tests coming back and reading normal primary care physicians not under that this could be cancer and we got to look for the increases. I think they're starting to learn that now. So when I had that 2.75, clearly now we know that was that was cancer growing. I probably could have done more tightly controlled PSA testing to get it diagnosed earlier. The other thing I did, which which I think is a risk for men, is active surveillance. The way it was explained to me, it just makes it music to the ears of a prostate cancer patient. You're like, okay, so I can avoid surgery. I don't have to get ED. Well, the risk of ED now is not as high because they're doing these robotic surgeries, nerve-sparing surgeries, and the risk of ED is so much lower. But when you hear that you might have ED and you can put off surgery, you do it. That I think is a failure in the system. I think that they should talk more about this message, which I hope to share today. You've got cancer in a walnut-sized gland sitting in your body, especially at age 60. You don't need it anymore. It's a reproductive gland. You don't need that gland. That gland's got cancer in it, in a nice little box. And we can take it out, and you'll be cancer free. Or we can wait and take it out. Then they should say not that that's good because you can avoid the surgery and the ED and all that. Because they should say that the likelihood of the ED is is low now, but there's a risk of leaving it in because some patients it grows faster than we think it's gonna grow. And you've become a metastatic cancer patient. That's what happened to me. So I'm telling men, if you think I'm gonna, I'm gonna wait, I'll take this out in a year, why do the surgery today if I can take it out in a year or two years, take it out today? Why risk something you're gonna do in the future? Why risk the fact that at that point you might be like me and it might have a margin and millions of cancer cells get out, and you're gonna be treated for metastatic disease the rest of your life and have to live with cancer and also live with this horrible treatment that's necessary of this ADT, which I gotta tell you is the worst experience I've gone through in my life. And I'm I know people go through horrible experiences for all kinds of surgery. Just for me, this was the worst. If you don't have to go through any of that, that's why I tell that part of the story, because if you can avoid going through that, why wouldn't you avoid going through that?
SPEAKER_03:Yet all of us have heard in many things that we've had. Let's just wait, let's just watch it. I get that completely. All right, let's now get into your family. You've got three boys, they were all young adults. When did you tell them? Why did you tell them? How did you tell them? And how did they react?
SPEAKER_00:The first conversation was from the Gleason Sixth Biopsy and the decision to be active surveillance. Surveillance, right? That decision was made in November of 2020. You've got to remember that time, what we're going through, right? Or is this COVID? So Oh, that's right. So everything we're doing is a call like you and I are doing it today on Zoom calls, and I didn't want to do it on a Zoom call, and I knew I was getting together with two of my boys at Thanksgiving. The other one couldn't be there, but at least I'd have one on the phone and two in person. I was only going to wait a couple of weeks to tell them about my decision. It gave me time to educate myself more about the active surveillance and the prostate itself, so I could talk to them intellectually about what was going on and honestly about what was going on. So I didn't want to scare them. But I also wanted them to know because these are my boys. I don't know if I said this already, but my dad had prostate cancer, his brother had prostate, I have prostate cancer. And so they need to know you're at risk. So this is a scary conversation because partly I'm telling them about me and trying to tell them I've got this under control. I'm I'm handling this aspect of my life. But you guys need to know because you're not 40 yet, but when you are, we're gonna be on this with you guys. So the how to handle it is you've got to remember one is your especially adult children, but even your little kids. I remember when they're little, you're your kids feel your emotions. They know, they know no matter how you try to couch it, they know you're struggling emotionally with what's going on. So you just gotta be honest with what's going on. They see right through any anything that you're trying to sugarcoat. So I just was very brutal with them about the this is what it, you know, this is what it is. I've got cancer. This is what my doctor tells me. I told him all about active surveillance. This is why I chose it, because I feel that if I can put off the surgery, a conversation I wouldn't have now, but if then I was telling him why I put off the surgery, because he said I could wait maybe even five years. So I figured I'm gonna wait. And I got another biopsy in six months, and then I talked to them about their risk for prostate cancer. And of course, that scared them, and they had a lot of questions. And they said, So what do we do? I explained to them, you're just gonna start getting blood tests at age 40, maybe even at 35, if we can convince your doctor to do it early. Now it's time that I need the surgery. That conversation was not difficult. He said, Okay, the surgery's coming sooner than I thought. I'm gonna get it taken out. The expectation is that when you take the prostate out, the cancer will be done. That's oh, okay.
SPEAKER_03:Because at that point, you didn't know it had metastasized, right?
SPEAKER_00:So at that point, they're pretty much okay. Good luck, Dad. We know you'll do fine surgeries, work out all the time, you're gonna do great. That was a real simple conversation. Then we get the metastasis. Now the conversation is a little scarier. Let's see. So that was November of 2020 was the surgery. So now we're in the December time frame when I get the that it's metastasized. Early December, tell them that, and of course, now they're nervous. Okay, what does this mean? And then you tell them, well, what it means is I've got to decide how it's gonna be where I'm gonna go for treatment. And I told them what I've chosen, and that there's gonna be this hormone therapy and radiation. I just told them all the way through. And then the next conversations were a lot about the hormone therapy because they check in on me to see how I was doing. Just how are you doing? I'm you know, and you know, there's some of it because I'd say, well, like you know, I'm gaining a lot of weight. I'm having now I'm having like 10 hot flashes a day. What are hot flashes? And I'd explain to them hot flashes, and then they'd be with me and they would see me have a hot flash. Oh, cow, what the heck? I go, this is a hot flash I was talking about. I get them all day long. I get them at night.
SPEAKER_03:Did you expect at all at that point for them to come home? What were your expectations of them? I always wondered when you get really sick like that, the kids are concerned, they're building their own lives, but did any of them say, I'll move home and help, or talk to your wife behind your back and say, Mom, what do you need from us? What expectation should we expect or want from our adult children when these kinds of things happen in our lives?
SPEAKER_00:I know people gone through things where they become paralyzed, horrible, you know, logic conditions or whatever, brain tumors. And uh yes, kids should come home and be with that parent who is disabled and help as much as they possibly can. I know kids that have quit working to come home and take care of their parents, and then their parent dies six months to a year later, and they're glad they spent every minute with them. But this disease, it does not require any sort of help. Mostly what you go through with this disease, especially when your hormones are out of whack, it's sort of an emotional thing and all the physical changes you're going through. So it's nice to get the phone calls and how you doing. And it's really nice that they want to be with you. They'll they'll take the extra step to come and do visits. And I think that's important for kids to know that hey, dad looks like everything's going great, but quite frankly, it might be good to go hang with them because it's nice. It's nice to have them come around when you're not you're feeling physically physically not disabled, but just not so good.
SPEAKER_03:That makes perfect sense. I want to wrap up. You've been on such a mission, and we're going to share this big video. You've had the experience and you're giving this message to men. What do you want to leave our listeners with after this conversation? What do you hope people take away from this?
SPEAKER_00:I what I hope they take away from it is don't just accept normal as normal. Know your PSA level, know the number. Just like you might know your cholesterol number or odometer reading, know your PSA level because you need to know that so that you can compare it to last year's, and when you get it next year, you can compare next year's to this year's. Because what you're looking for and what's most important in your PSA level is has there been a rapid increase? And you really need to be concerned of any PSA level above 2.5, and you need to be monitoring that with your doctor more closely for changes, because that could be cancer growing your prostate. It could be other things, but when you're working as a team with your doctor, there are other tests they can do to determine whether that's cancer. If you let it sit, if you don't get your PSA tested, because you're not going to feel anything when you have prostate cancer in your prostate, you let it go and it metastasizes, and you finally get it diagnosed when it's already metastasized one of your organs because you're going in with an issue with one of your organs, your kidney, your gut, places that it can metastasize and cause problems. And you say, Okay, I got something going on, and your doctor says, Guess what? You've got prostate cancer and it's all over your body. Now you're in big trouble. PSA test is very simple. Get it done every year, hopefully starting at age 40. Your doctor probably won't want to do it. Try to convince them to do it, but get it in your 40s, get it every year, know your number and watch for rapid increases. Anything over a 2.5 be concerned and be vigilant on that, be a self-advocate for further testing. That's the main message. And the other message is for the history. Know your prostate cancer history from your father's side and also know your cancer history in your family. Because if your mother or your sister had breast cancer before the age 60, you're at higher risk for prostate cancer. Wait, say that again if your mother or your sister has breast cancer before the age of 60, that puts you at a higher risk for prostate cancer. Then we also learn that the bracket gene, which is talked about a lot now, and women are very familiar with because you hear about it with breast cancer and ovarian, but also finding the bracket gene is significant for a risk for pancreatic cancer and prostate cancer. If there's a bracket gene in your family history, anywhere, mom or dad, or you you haven't been tested yet, maybe you should be tested because if you have it, you have a higher risk for prostate cancer. You got to know all the family history of cancer because a good doctor will look at that, especially if they see prostate cancer in your history. They're gonna be more vigilant on your PSA testing than if you don't report it. If you don't know about it, you could be in trouble. You could get it, and uh you didn't even know your dad had it. That's why dad's out there, don't be silent on it. Don't forget to tell them about grandpa, don't forget to tell them about your brother, don't forget to tell them about you. If you've got prostate cancer, tell your boys and boys ask your mom and dad. Did dad have prostate cancer? Does my uncle have prostate cancer? Does any grandpa have on my dad's side have grandpa have prostate cancer? So those are the two things that I think are most important for early detection and get it out while it's in the case.
SPEAKER_03:And I hate to ask something else because this was such a great wrap-up, but most women listen to this podcast. And also I've been told by doctors, men are less interested in their health and being vigilant about their health than women are. So, what message can we give women to help the men in their lives?
SPEAKER_00:So much of my talks that you're gonna share are about men remaining silent on this issue. I feel like I'm coming forward. What I think women will women take care of their health. Men do not. Men think we're gonna live forever. We feel good, we don't get tested, we don't go to the doctor, we feel good. What women need to do, and it's gonna be funny for them, actually. They're gonna have fun with this. Ask your husband today or your brother what's your PSA. And I would love to see the stats on this. How many of their husbands say, Why are you asking it's normal? And they'll say, Well, what's your level? They don't they have no clue. Just know it's normal. So try to get them to look at what was it this year, what was it last year? If you have a husband or a brother, or probably not your dad at this point, but a brother or husband who has not ever been tested, you know the doctor the next day. I mean, just say it's a simple blood draw. It takes 30 seconds and they'll send it off, and you'll have your result the next day. Get the PSA test and start tracking it. Women are dynamos on this stuff, and they will stay on it. And men, like, I don't need to go to the doctor. I feel fine. Well, guess what? I just listened to a talk where this guy said it's asymptomatic, didn't feel a thing, and now he has metastatic prostate cancer. So let's do a simple blood test. I don't know. Right.
SPEAKER_03:Well, Joe, thank you so much. I give you so much credit for sharing this story, and I know it's gonna help so many people. I got on my husband immediately, and had my sister get on her husband immediately. I'm gonna talk to my son now because he's in his 30s and he's got to pay attention to this. But anyway, thank you so much. It's been a great pleasure.
SPEAKER_00:Thank you for giving me the time. I hope that especially all the women listening with you're the word spreaders. Men don't talk about this. I know, it's nothing to talk about. Okay.
SPEAKER_03:Okay, thanks so much. Well, that's a wrap. Joe, thanks so much for sharing your story. And reminding us that conversations about health are really conversations about love. We need to do these more often. To our listeners, no shave November isn't just about skipping the razor. It's about awareness, prevention, and early detection. Talk to the men in your life about their PSA number. If you're a parent, another partner. Someone facing a series on it, remember, connecting an honesty member mode. You can learn more about don't make anything reader to take it into awareness in audio note. Thank you to Connie Gordon. You're our audio engineer. Connie, we really appreciate you. And one quick followed up, please follow us on social media, Facebook and Instagram. It really helps grow our brain. Finally, if you want to receive our newsletter, which we send out maybe twice a month, send it an email. Bite your talent. I can add your email.com. And remember you don't want to bite your tongue if you want to ask about your PSA level. But in most cases, remember, sometimes you have to bite your tongue.
