Movember: The Conversation After the Diagnosis (EP 141)

[0:17] Hello, friends. Uncle Marv here with another episode of my Unhealthy Podcast.

[0:23] So I'm going to start a little differently here. When someone hears the words you have prostate cancer, you're not the only one whose life changes. There's a spouse, a partner, a family member, people who love them and are asking what happens now. So we are back with part two talking about prostate cancer. And joining me once again is Michael Bovarnick. We're talking about the conversations beyond the diagnosis. What happens after you leave the doctor's office?

[0:57] How do you ask for help? How do you offer it? What does it mean to support someone, without having all the answers? So, Michael, thank you for coming back again and joining me again, sir. My pleasure, Marvin. I thank you for having me. So I know that I've asked you, you know, and before, you know, in terms of what's the first thought that is had when you're told, but I didn't ask what happens when you, when you leave the office, you know, who's usually the first person you talk to and, and how does that conversation go? Well, if your partner or spouse is not with you at that visit, then they're probably going to be the, assumingly, they're going to be one of the first people you talk to versus maybe a friend. But normally, I would think a spouse. And how to express that and the ramifications of understanding what prostate cancer can evolve into. And again, I emphasize, depending on the stage of the prostate cancer, because men will go through if it's.

[2:06] As I was when I had my prostate removed 23 years ago, as I said earlier in conversations, I was very fortunate that I had an excellent surgeon who did nerve sparing and, the cancer had not metastasized out of the prostate. So he was able to save what we call the left nerve and the right nerve which controls your spur and, being able to get in a direction. So I maintained a great sex length of 20 years until it returned. Then it was a whole different ballgame because I had to go on this androgen deprivation therapy, which kills testosterone in your body. Well, guess what? Testosterone, you're not going to get an erection, and you're not going to be able to have an orgasm.

[2:59] So, again, I emphasize depending on the stage of cancer, but.

[3:07] Understanding even if you, like I was initially, the nerves were spared, the potential is there. But again, if you've has metastasized within the body and you still have your prostate, it's now affecting lymph nodes potentially and the nerves. Now you need other treatments, radiation as an example. Well, that creates a whole different dynamic. But more often than not, it is not uncommon for men who have gone through these various types of.

[3:44] Protocols to ultimately end up using some form of medication, i.e. Viagra, Cialis, or something like that, or even a pump. So, having those, but bottom line to answer your question directly, having that conversation is not easy, with the lack of knowledge of how it is going to affect the individual and the spouse collectively. And as we talked about in our other episodes to some degree, too many men often just clam up. They don't know how to talk about it. They don't know how to express themselves and be open with their spouse or partner about what's happening to their body, and how it may affect your relationship. All right. You've answered about three or four questions.

[4:38] Sorry, I jumped ahead.

[4:42] I like the fact that, you know, one, you're not afraid to talk about it because I know that a lot of men, even if they've gone through it and, you know, they're doing well, they still don't tell their friends about it. And I was going to ask in a lot of ways, which is, where is the harder place to talk about it? Is it the doctor's office, the home, or just out in public? Because it seems like all three are places that men don't want to talk. Well, let's take out in public, okay? So you have your friends and you, and again, there's just hearsay stories, okay? You talk to your friends, you say, oh, God, I've just been diagnosed with prostate cancer. Too often, the response from the friend may be, oh, well, that's an easy cancer. Okay, well, there's no such thing as an easy cancer. And so, again, because it's a lack of understanding of the severity of what cross-state cancer can be.

[5:48] The spousal conversation, again, my experience and through my own research that I've done in the last year and a half for this project, is finding and talking to a man in support groups, they're just so embarrassed about it. This is not a subject that men normally talk about. You can talk about sex stories and jokes and all the rest of it, but it comes now down to having a personal situation that is affecting your manhood, if you will.

[6:27] And it does a tremendous job, as we just mentioned, emotionally, mentally, and I've said it before, in my opinion, and again, strictly opinion, that the mental, emotional side can be sometimes worse than dealing with the physical aspects of what the cancer actually is. And being able to rise above these commas.

[6:53] Going back to the clinician.

[6:57] So, I love telling the story that if you have a, let's call it an advanced case of prostate cancer, as in my case, where I had to go on androgen deprivation therapy. What did that mean? Androgen deprivation therapy meant that the cancer had metastasized. And in order to try to control it, you're given this ADT and either an injectable androgen deprivation therapy. It's either through an injectable or there are no oral medications. And what that essentially does is kill the testosterone in the body. Cancer loves, prostate cancer loves testosterone. So my testosterone literally went to zero. Well, that has a dramatic effect. I don't care if you've been a sexually active individual or not, you're not going to have sex. You're not going to have an, you're not going to have, you're not going to be able to get an erection. You're not going to have an orgasm. And how does that impact individuals, again, without understanding the mental side of it, the emotional side of it.

[8:01] But going back to the commission, I love telling a story. And just picture a nice, some feral guy, 55, whatever age, you know, and he's this big, wonderful guy, a masculine guy. And all of a sudden, he's diagnosed with prostate cancer. And more of an advanced stage there. He could have some serious physical problems sexually, if you will. But now his medical oncologist happens to be a beautiful young woman, and he's the one that now has to go in and have a discussion with this beautiful medical oncologist when he walks in well what's the first thing he's thinking about boy i wonder what she'd be like in that, okay and but now he's going to ask her well gee how come my testicles are shrinking, or how come I can't get an erection? What are we going to do? That's not easy for most men. All right. Again, I've been on this road between breast cancer and heart surgery. I don't care. I'm not embarrassed about asking these questions or making comments.

[9:12] And that's the only way you're going to find out and get your education. And that's key, getting educated. Yeah. help you get through this stuff so hopefully that that answers some of the question it does uh and i just, you know you brought up the scenario where you know the gentleman is probably more reluctant to talk about it and that just brought to mind that this is one of those silent killers oh absolutely but from two perspectives one because a lot of times there are no symptoms and two, because we don't talk about it from a silent perspective.

[9:50] I want to make sure that we let people know as we're talking about this.

[9:56] Michael's website, theprostateducationproject.org, has an entire section that talks about not just for patients, but also families. There's an education library that even has a section on couples communication. So these are all things that can help in that. But I want to make sure also, Micah, that we talk about the fact that this isn't just, you know, a white America problem, which is, you know, where you see it on TV most of all. But this is this is a thing that happens in all cultures. You mentioned my culture, the African American culture. I live in South Florida, where there's a heavy Latino population and your website is also in Spanish. Yes. When we did this website, Marvin, my web developer is of Hispanic origin and 42-year-old male. And we started doing this together and started doing some research about the Hispanic population. And again, talking about different.

[11:16] Upbringings and so forth in the Hispanic community, this is just never talked about.

[11:24] And statistically, and again, this is all public information Statistically, the Hispanic community has the highest The Hispanic male has a large, based on population, On a percentage basis, has the highest rate of prostate cancer Versus the African American community, versus the Caucasian community, So we did, we chose, based on what we found.

[11:50] Because of the different dialects, so to say, of Spanish, we went and put this, program, it's 100% medically accepted universal Spanish. No different dialects, no slang, nothing. The entire website has been converted to Spanish. because, again, we found that the Hispanic community in general, again, depending on where they are, people live and so forth, and, again, we don't know, again, doctors and being able to get to clinicians, having something like this hopefully will help people. And as we said in an earlier conversation, even if people wanted to go to try to learn about prostate cancer, and, again, not that this has all of the answers, certainly does not, But to get some idea, and again, you mentioned before about the couples, the one thing I did strongly put in that website is talking about intimacy and how that affects couples and.

[12:56] Relationships, not just sex. Well, yeah, obviously, because, uh, one of the things to go is just simple, basic communication, you know, not, not talking or feeling ashamed or, you know, not wanting the other to worry is obviously something that needs to be dealt with, with this.

[13:17] Um, once people get into treatment, there was, and I did not prep you for this, so I apologize if I didn't get you off guard, but there was a section in here when I was going through your library that kind of threw me off guard, hot flashes and night sweats. Those are things that you never really hear attributed to men. But apparently if a man has been diagnosed and is going through hormone treatment, ADT treatment, this can be a thing. It's not can be, it is. And because the male hormone is affected so dramatically, meaning that testosterone, is affected, going on the ADT treatment, testosterone basically is going down to less, it's dropping dramatically. And in my personal case, I was less than three. And the effects of that are hormonal and metabolic. So the brain takes over, and we call it the hypothalamus, which is the thermostat in the brain.

[14:25] I found any slight change in temperature, hot or cold, as an example, I'd get a flash. And that could be as simple as in bed, churning over at night, living in Reno, Nevada, in wintertime, and the heat goes on. Well, when it went on, I'd get a hot flash. Or when I ate certain foods, I would get flashes. And they became quite regular. So I absolutely understood what a woman was going through or goes through when she's going through her hormonal changes in life, later in life. Sleep deprivation became a critical, and still is, by the way, a problem. Because what happens with the ADT.

[15:17] It is not uncommon to build fat. It affects, ADT treatments will affect bone mass, can affect muscle mass. And again, as I say, generally, it is not uncommon for men to put on 5 to 10 pounds of belly fat. Not just the sheer fact that the metabolism is not working like it used to. So all of these changes affect, and then we go back to the nighttime frequency of urination at night. What generally happens is the fluid, you're urinating during the day, but there's also a buildup of fluids in the lower extremity. For whatever reason, how the body functions, and then when you're laying down at night, that fluid now comes back up, and it is not uncommon to be up three or four times a night to urinate as part of this ADT treatment.

[16:19] And then interestingly enough, and to digress a little bit, as we have talked about before, I've been very fortunate so far to be able to go on what is referred to as an ADT holiday, meaning that my PSA numbers remained consistently undetectable for seven months. Which gave us an opportunity, based on my medical oncologist and my radiation oncologist, to go on, again, quote, the ADT holiday, stopping the medication. Well, one would think, well, oh boy, you're going to stop it. Here we go. We're going to go right back to where you were before. Well, some of the side effects, interestingly enough, going off of the medication were worse than being on it because the body is now no longer under a controlled environment. And the testosterone is trying to rebuild. So after being off of the medication for six months, my testosterone, again, I emphasize, I'm 83 years old, so things happen a little slower at my age.

[17:26] But my testosterone in six months went back to a whopping 55. So the body is still trying to recover, and it's fighting the negativity of the ADT, and try to regain a balance. So it's finally a little bit better than where it was, but it's not a great, situation to have to deal with. So, ladies and gentlemen, listening, the website, theprostateeducationproject.org, all of these things, and that last topic I brought up about hot flashes, all readily available on the website. That was a PDF that I just opened up. You can get updates by email, but you don't have to pay to get a lot of this information. It is exactly what it says it is, an education library that's giving you the information that you need to know.

[18:28] Martin, I'd like to expand on one thing. First of all, I can't begin to thank you enough for trying to help educate people as we have chosen to do because of such a lack of awareness in this whole thing. And I'm happy to say that I'm hoping within the next two months, we're changing our organization from an LLC to a 501c3. And in doing so, I now have put together a board of directors, which I had to do for the 501c3, that include my medical oncologist, who is also a research scientist, my primary care doctor, who could talk about this from a primary standpoint and what he looks for with patients and how he treats his patients. And then I have through one of the urological groups here in Reno, one of their clinicians has joined the board as well. So bottom line, I say that because hopefully within the next two months, as we roll this thing further out, And these people, along with others, there will be a section on the website, for clinicians who will be writing articles about prostate cancer.

[19:51] Trying to make it not from a clinical side, but for patients to understand what potential problems they could be and how they're dealing with it. So I just want to make your way, this is, this is the Frosted Education Project slash library is expanding and will be doing more for educational purposes. All right. Well, hopefully that goes through without a hitch. I want to say congratulations on that. Thank you. And I should say also thank you for putting this together and doing this on behalf of men out there that simply need to know.

[20:29] And I do want to say that, you know, there are times where I'll, you know, sit throughout the year and think, you know, some of this stuff shouldn't be just a conversation during the month of November. This is something that happens every day to someone in, you know, around the world that is going through this and it should be more than just one month that we think about it. So, Michael, as you get closer to that announcement, I hope you'll reach out to me and we'll revisit Let me just add you one more thing, what you just said.

[21:03] Just so you know, per the American Cancer Society, the estimated number of men annually diagnosed in the United States, is roughly 320,000 to 330,000 men compared to the 350,000 women diagnosed with breast cancer. So this is not something to be sneezed at. This is a serious problem. Unfortunately, nobody talks about it. Well, we will. Lots of credit to you for doing what you're doing. Well, thank you to you, actually, for being out there for me to find, to talk about it. And we will keep talking about it. Mike, thank you very much for coming on and doing these shows for me through Movember. And like I said, we'll be reaching out and talking again. Look forward to it. Thanks, Mark. All right, folks. Thank you for listening. Just know prostate cancer doesn't just affect the person who receives the diagnosis. It touches the people who love them, too. And sometimes the most meaningful thing you can say if you're on the other side is you don't have to do this alone. So a big thank you to Michael Bovarnik for joining me and being a part of this conversation.

[22:14] During this Movember, here's my challenge to you. Check in on somebody. If you've been putting off a conversation with your doctor, make the appointment. If someone you love is facing a diagnosis, ask how you can help and give them the room to answer. And hopefully, folks, if this episode made you think of someone, send it to them. Follow the Unhealthy Podcast wherever you listen so you don't miss another conversation. Thank you again for listening. Thank you for hanging out. And remember, you don't have to get healthy all at once, but you can take it one step at a time. We'll talk to you soon. And until next time, live healthy and be happy.