Tom shares his experience with advanced prostate cancer, from a Gleason 9 diagnosis through radiation and hormone therapy, while navigating treatment side effects including fatigue and changes in sexual health. He emphasizes the benefits he found through exercise, the need for better intimacy and caregiver support, and the importance of patients educating themselves, asking questions, and staying actively involved in their care.
I'm Tom Scott. I'm 78 years old. My father had prostate cancer and had metastatic in his bones and he passed away when he was 77. So I was always concerned about through the years getting my PSA tested and so forth. But then at some point they started saying, "Well, if you get your PSA tested, they're having a lot of false positives and there was over treating going on." And then the health system there where I get my medical care, they dropped it as a... Once I hit 70, they stopped doing PSA testing and the digital rectal exam.
Probably when I was 74, 75, and I had BPH, so my doc was doing the digital rectal exam for that and he said, "Oh, you might want to go see the urologist." And I did at five, he said, "Well, we just need to keep an eye on it." And so we didn't really do anything. That would've been in probably four years ago, I guess. But then the next couple of years it started going up.
I was over in Barcelona at the end of a vacation and my urethra closed up. I couldn't pee. And so I went to the hospital there and they essentially catheterized me and I came back with a bag on my leg. So then we started working on getting the prostate reduced and we ended up going with the combination of TURP and the resumed treatment in a single.
And when my urologist got in there with the TURP party, immediately he saw tissue that wasn't normal. He essentially found the tumor, cut into the tumor, and he knew immediately what that was. Centered off to get analyzed and did a CT scan, and CT scan showed that there was potential cancer both there and in some of the lymph nodes and on a rib. And when they came back, it was Gleason nine. Well, at that point, I didn't know, I was dumb. I mean, I was just uninformed. Actually, I didn't know that it was as serious as it is. It's one of the things that nobody ever really explained to me at any time that I had a very serious form of prostate cancer.
They just started treating me. So I really never got scared. I was telling my friend, "Oh, I got prostate cancer. They're going to do the treatment and I'm going to die from something else." My wife, of course, became very concerned because it's cancer. And I tried to assure her, "Well, I've been doing all this research on the internet. It's going to be okay."
Even though I didn't believe that myself or I couldn't really tell from the internet because I never found a place that, "Well, if you're 77 years old and you have this cancer, you're going to have a five-year survival." I could never find that anywhere in the literatures, but she was very concerned. And in fact, once we started treatment, because of the location of the tumor, I had to skip any... They weren't going to do a surgery to remove it. Radiation was going to be the first line of defense, starting with the... We started ADT, the hormone treatment, and then went to the radiation treatment.
We got through the 28 treatments. I actually started the hormone treatments, I'd started earlier on. And the PSA had been dropping just down to one at the point. When I finished the radiation treatment, two weeks later, my PSA jumped up and then it jumped up again from one to three and then to four or five every two weeks. And then finally got up to five and the fire alarm bells went off with my oncologist and she started me on a different hormone drug. In addition to the Lupron that I had, she started me on the enzalutamide. And then my PSA went to undetectable within a couple of weeks, which is where I'm at today. Side effects started out with just the straight Lupron. I mean, having hot flashes, reduced libido or no libido, a little bit of brain fog, oh, and fatigue.
The radiation increased the fatigue a little bit. About halfway through, I started to feel that, and then following it for another month, the radiation, I had a lot of fatigue, but it started, and it would go away. And then when I got the enzalutamide, fatigue was back. The other thing that happened, and I love this part of the story, was I was getting on the... None of my physicians told me about exercise, but I was on the men's research, the couple of different groups on the internet, people were saying, "Oh, you got to exercise. You got to exercise."
And so I started going to the gym three days a week for 45 minutes, doing weight training and strength training on the major muscle groups on the machines rather than I wasn't doing any free weights. The machines make it really easy to exercise. And lo and behold, people started saying how much better I looked and, "Oh, you're standing up straighter."
And I was feeling a lot better. And so that's been a wonderful side effect for me anyway, because I've continued that now for a year and I get antsy when I can't go to the gym. Bought a recumbent bike just a few weeks ago, and I've started doing that on the days that I'm not at the gym, mainly because I also fell and broke seven ribs, so I haven't done any upper body exercises for a month and a half, but I wanted to make sure I was getting more exercise.
The biggest side effect though that has really bothered me the most was the loss of libido. I had a very active sexual life with my wife, and even though I had ED prior to this, I was still able to have intercourse with Cialis, but I haven't had really anything since the diagnosis. We've done all of the things for trying to get the penis back to work a little bit. We haven't found anything to work yet, but in the meantime, I kept asking for counseling for the both of us on intimacy counseling.
What can we do differently that will at least give her satisfaction, try and get some of it back even without intercourse? Nobody thinks about offering that type of counseling, or they don't offer it at all. Nobody that I found. I talked to the sexual medicine people. It's all, "Well, let's get the mechanics going again." But not talking about the emotional part of it and helping you with, especially your spouse, get through it and give her some coping skills because it's been harder on her than it has been on me.
I mean, she's been in tears a lot of the time. That has been the number one side effect in my life is that, and especially because of how she's felt about it. It's part of the broader taking care of the caregiver side, giving us the resources for her, not only just for not only the sexual part, but also the anxiety that rises out of me having prostate cancer, and not believing that I'm not going to die tomorrow or something.
I think that's a key component of the treatment of prostate cancer that needs some national advocacy, to raise that awareness, the need for it, the importance of it, and to go and to maybe help organize it, whatever it takes to get into the cancer treatment guidelines, that it's part of the standards for if you're a national cancer center, you need to provide this and the insurance needs to pay for it. Well, at first, I wish they would have first told me how serious this was, explain all the different options. What I felt like they were doing was they were saying, "Oh, you've got prostate cancer. Here's your treatment. You're going to take these pills and you're going to go get this radiation treatment." But not a lot of education about how to mitigate the side effects, I guess. Nobody ever talked about exercise. None of the physicians talked about exercise and diet.
I got that online. So the other thing I would encourage, especially newly diagnosed is if they got a Facebook account, go to PCF's group there and then a real helpful group of the HealthUnlocked that Malecare operates has been very... It's online chats and people sharing their experiences. And well, I heard about this study and what do you think? And there's people saying, "Well, there's one guy on there who's probably the most knowledgeable non-physician in the world, but he reads every single article and writes it.
He translates it to human, to English language and keeps it on his blog." And then I also found out that the videos from PCRI, I found those very useful in my original research. Learning YouTube was a great source of information, especially for translating the research into the current research and debunking the stuff that no longer works.
And I have a lot of confidence in the PCRIs videos. And I went to one of their patient conferences last September up in LA too. Well, today I feel great. I mean, cross my fingers, my PSA has been undetectable for five months. I feel I have more energy than I've had in a long time. I'm just waiting for the shoe to drop because my month and my quarterly PSA... And I'm also fortunate, Vietnam veteran, I qualified for VA care, so I get second opinions from the VA here in San Diego, plus they pay for all my medications.
As a Vietnam veteran, if you were to set foot in country, you're automatically qualified for VA benefits and prostate cancer due to Agent Orange, whether you got exposed to it or not, it's just assumed that you got exposed to it. And also you had qualified for 100% VA disability, which means a monthly check, as well as full VA healthcare benefits at no cost.
I signed up for the VA right away and then started checking out their healthcare system we have here in San Diego. And I've been so surprised because the VA has this reputation of being, "Oh, you're going to take forever to get anything..." And my experience has been that they've been very responsive. I can get appointments when I need them and the people are really super friendly. They say they recognize they're working with veterans who served their country and they're there to take care of them and to help them give them what they need, what they've earned.
Well, I think my first advice about being newly diagnosed is not to freak out. Even when you have Gleason's nine, high risk, advanced, metastatic, you're not going to die tomorrow. You've got time to make decisions in an orderly fashion. Learning as much as you can about the prostate cancer and the PCF's patient guide that they publish is fantastic. It's the first thing I found. Start doing some research on the internet yourself to understand what you're going to run into.
Ask your doctor good questions. Take a list of questions whenever you go see the doctor about you've learned some stuff on the internet or whatever, reading other things and you want to know how that affects you and your treatment and not just sit there and listen to them and they'll tell you what they're... "Here, you do this, do that." And you'll meet lots of people that's 15, 20 years with prostate cancer and they're still living strong lives. And don't forget to exercise and eat right.
Eat the heart healthy diet we've been told we should be eating all these years. Keep a positive attitude about it. Again, it's not like some of these other cancers that are real drastic. The treatments aren't... Even the chemotherapy that they use for prostate cancer is not as debilitating as what we hear about from other cancers. But it is a process and it's going to affect your life. But for the most part, you can continue the life you've had.