Jim shares his prostate cancer journey, from an elevated PSA and eventual Gleason 9 diagnosis through surgery, radiation, hormone therapy, and participation in clinical research. He reflects on treatment side effects, the importance of research and genetic testing, and the support he has received from his care team, family, and prostate cancer support group. His wife, Kathy, shares the caregiver perspective, including the fear and uncertainty she experienced and how clear communication and support helped them navigate the journey together.
Jim Kruger:
My name is Jim Kruger. I am 76. I retired in 2004. I owned a mechanical contracting company and we worked on different boiler plants and incineration plants. And I live in Ellicott City, Maryland, right outside of Baltimore. And after I retired, I actually went to college and started in 2010 and got an AA degree from the college I went to in 1969. And then I transferred to the University of Maryland, Baltimore County, got a bachelor's degree in political science and then a master's degree in public policy and a PhD in public policy in 2021.
I had seen my family doctor for 25 years and he did a PSA test, probably starting when I was 50. And they were in the low twos, ones and twos. And then in 2017, in July, it went to 4.35. So he said, "You need to go see a urologist." And he did not do a digital rectal exam that day. He had been doing it during the years. And so I called the local urology company and they told me it was going to be three weeks before they could see me.
So Kathy and I went away for a weekend to Ocean City. And down there, I just decided that I couldn't wait three weeks. So I came back and I called Johns Hopkins, urology. And I got an appointment the next day with a guy named Dr. Mohamad Allaf, who is well known in the prostate field. I'd never heard of him. He's now the chief urologist at Hopkins. And I saw him a couple days after that. And he did a DRE and he says, "Yeah, you've got a lump there." And then he asked me if I wanted to do a biopsy. He told me I needed a biopsy. And so I went in a week or two later and he did a thing called a perineal biopsy where they were just starting to do that. He said he was an early adopter of it. And he was having a study with a guy named Dr. Gorin, Michael Gorin.
A couple days later, his nurse called and said I had a Gleason 6 and that it's not too bad, but you got to keep an eye on it. So I said, "Okay." And at that point, he sent me to see one of his cohorts, Dr. Danny Song, he's a radiology oncologist at Hopkins, and Dr. Song did an examination. He says, "Nah, I don't like this." So he talked to Dr. Allaf and there was a study going on at Hopkins at that point, I think called PSMA PET scan study. And so they had me enrolled in that and they did that. There was a lot of testing for that, a couple months worth of testing. And after that test was done, they came back and said, "Well, we're seeing fours in that, so that means you got at least a Gleason 7." And then three days in a row, Dr. Song called me at 8:30 in the morning, and I've never had a doctor call me three times in a row. And I said, "Dr. Song, you're scaring me." He goes, "Well, you've got something worse than you think, and we got to be very aggressive with this."
And so they did a fusion MRI as part of this study, and I met with Dr. Allaf and he says, "Well, you got to talk to Dr. Song and see what's going to happen first before he talked to me about surgery." And so I met with Dr. Song and he said he offered me a trimodal way of treatment. It would be brachytherapy, hormone therapy, and radiation therapy. It would take about six months beginning in February of 2018. And I don't like to wait very long for anything. So I went and said, thank you very much.
And I went to Dr. Allaf and he said, "Yeah." He said, "We can operate on you." This is in November of '17. He said, "We can operate on you, but not for eight weeks." I started doing my Kegel exercises, my wife taught me how to do those. And went through this holiday season. And then February 12th, 2018, I had surgery. And it was exactly how they explained it. They said you'd be up and about that afternoon. And that afternoon, I was walking around the halls with the other guys because Hopkins does a lot of guys and came home feeling great. And then two weeks later, I got my catheter out and then I developed what's called an ileus where my intestines were paralyzed. So I ended up in the hospital back in the hospital for three days. And after that, everything was going very good. This was February and in May, we flew out to Seattle to go to a wedding and I was feeling great.
So I was getting testing every three months and then six months. And then on my third anniversary, my PSA came back at 0.1, not less than 0.1. So I didn't know what that meant, but I wrote Dr. Allaf a note and he says, "You got to see Dr. Song." So I went and saw Dr. Song and he developed a 38 series radiation for me. It started sometime in March of 21 for 38 days, five days a week for seven and a half weeks.
And my PSA at the end of that went down to less than 0.1, and then it started creeping back up. So over the next two years, it was creeping back up and they graduated me to medical oncology instead of radiation oncology. So I started seeing Dr. Katherine Marshall, Dr. Kathy Marshall, and she put me on hormone therapy for a year. And I came off of that last March and I think prostate cancer's in my rear view mirror.
I actually went to your website and looked it up and looked at the different things. You had different color combinations and I looked at that and I got Dr. Walsh's book and I read that three times and I just knew I wanted it out of me. So I knew that there was going to be consequences, but I was willing to face those rather than the uncertainty via radiation, is it really gone?
Oh, because I forgot to mention this. At the end, last time I saw Dr. Allaf, he put his arm around me. H says, "Jim," he says, "You are a Gleason 9, you're not a Gleason 7." He said, "We were really surprised." He said, "It's a good thing you got that surgery." And he said, "We did not expect it. Everybody was surprised that it was a Gleason 9." So I was in a special category.
The PSMA PET scan that I had, the first one showed fours in there. It was just being developed at this time. And so I was really lucky to be able to get the kind of care I got at Hopkins with all the newest stuff. And then when I started the radiation therapy, they put me on a table and they gave me a CAT scan and they got me exactly lined up so that they knew where my colon and my rectum and my bladder and everything were. So when they do radiation, it wouldn't burn me. And I had absolutely no effects from the radiation, damaging effects. I did get tired. A couple weeks into it, I got really tired, but then that was fine.
The urinary, I think we all leak and I've leaked more now in the last two years than I did the first five years. So I wear a pad every day and take a little pad off and that doesn't bother me. I have ED, I expected that. I was hoping with Dr. Walsh's book, they said, "Well, sometimes you don't have ED." And my group, just about everybody in my group around a table has ED except for two guys and we're all jealous of those. And mental problems, I didn't really have any mental problems with it. I have a very strong support system.
I love nurse practitioners. They have time to spend with you. They're not on 15 minute schedules. They can spend 45 minutes or an hour with you. Rana, Dr. Marshall's nurse practitioner or research nurse, and she's my rock right now. Before that, it was Dr. Song's nurse practitioner. And before that it was Dr. Allaf's. So I liked the way they do it. You see the nurse practitioners and you see the doctor and the doctors spend as much time as you need and they have with the nurse practitioners. I love them.
Dr. Marshall actually spoke through Zoom to our group one time, and we've had a urologist come from one of the local urology clinics, and they've come to our group. So everybody, Dr. Marshall's probably gotten a couple of people seeing her now because once you get past the radiation, then you want medical oncology. And Hopkins has a group of 13 prostate medical oncologists, which they just service prostate cancer survivors. So it's a whole group of them. And out here in Howard County, there's medical oncologists, but there's no prostate medical oncologist. So a couple of guys in the group have gone down and seen her.
We sat in her office for an hour the first time I met her last year, and she sat there and just answered my questions and got these questions. When I first met Dr. Marshall, she said, "You've had that since before your surgery." I said, "What?" She goes, "If you look at the first PSMA PET scan, it's there." And of course I didn't know it. But she says it's the size of a match head, so it's very small. And Dr. Song before he sent me to the radiology oncology, before he sent me to Dr. Marshall, he had me do a biopsy of the lymph node and it took them three shots to get what they wanted because it's very small and right behind my breast bed. So they were able to get pieces, but not anything that said prostate cancer. And the last one they froze and then that did say prostate cancer.
So yeah, she put me on hormone therapy. She was going through for two years and I didn't have any problems with it. Of course, I got hot flashes and they didn't really bother me because it meant that it was working. And every time I go and see Rana or there's another, Victoria's, a nurse practitioner down there, they say, "Look, it's less than 0.1 and no testosterone. Your testosterone is less than 2.5. So it's working." And I had my last shot in April and I had my last test last month and still my testosterone hasn't come back and the PSA is still less than 0.1 and I still have hot flashes every once in a while. So she was going to do it for a year and then she was going to do it two years and then she said, "I'm just going to do it for one year and see how you're doing." So I may never go back on it. It depends on whether she thinks I need it or not. So the hormone therapy has been relatively easy. I go through a lot of undershirts.
When I got diagnosed and had to set up for radiation therapy, it was when I was doing my dissertation defense, and I did that March 24th of 2021, and it came back that I had to add a chapter and embellish the last part of the book. And my one professor said, "I think you got too much on your plate." I said, "Time is not on my side, so I'm going to get it done." So I did get it done before radiation started. It took me like three weeks. And so that was behind me and it was hard. I was up a lot of nights. And then I was actually on the radiation table when I graduated because it was a virtual graduation because of COVID. And so I said to the ladies in there, I said, "I'm graduating from college today." They said, "Why are you here?" I said, "Well, I can't go to the graduation." So yes, it was a lot to do. I wrote a book about solid waste management and trash. So that was my area of expertise. So it keeps me interested.
It really hit me when I first got it, and then I came back and I say in my paper that Judy Heatherington kept walking me back off the leg. She was Dr. Song's nurse practitioner because I would see her every couple months, me and Kathy would go in, and she was very, very helpful. It does wear on you. So I asked Dr. Marshall, first time I saw her, I said, "Is this going to kill me?" She goes, "No." She says, "Something else is going to get you." But prostate cancer's not going to kill me. So that's very reassuring because she has so many tools.
I'm not putting stuff off. As far as exercise, no, I've never been an exerciser. I had to lose 20 pounds to have surgery. Dr. Allaf says, "It'd be easier on you if you lose 20 pounds." So I lost 15. And I was in a study, a weight loss study at Hopkins and they gave me a website to use called Lose It. And I've been using that since 2021, and that's helped. You write down in your journal what you eat every day and tells you calories and carbohydrates and stuff like that. So no, not really any lifestyle changes.
I feel really good about it. The guys at the prostate cancer group said, "Why do you do that?" I said, "Well, because I might be helping my child or my grandchild or might be helping you." A couple of good weight loss studies, the perineal biopsy study was ... You asked for my favorites. The perineal biopsy is one of my favorites because it eliminates the possibility of getting infected from a transrectal biopsy. And I know Hopkins is using them most of the time now. And like I said, I was number one in the study and I was surprised. I actually wrote a paper comparing the two different types of biopsies and sent it to Dr. Gorin and Dr. Allaf, and they both thanked me for it, gave a couple suggestions of how to make it better. Put a screen up like you do when you're doing a birth, you don't want everybody to see everything, and they said they've done that now.
And so that was a really important one because I think that really helps a lot of guys because my brother-in-law had one and he had terrible time for a month with all the side effects and the bleeding and stuff like that. And a lot of guys do, and now you don't. So that was a big one. And of course, the PSMA PET scan with Dr. Pienta, that's his name I couldn't remember. Dr. Pienta and Dr. Pomper guy that designed it. It was interesting. He was the one that injected me and my wife and I and him were in a little room and she goes, "Doc, if you can find it, why can't you kill it?" This is 2017. He goes, "We're working on it." And he said, "You told me the other day that you funded him from this from the day one." And he told me it took 30 years to do it.
And Dr. Pienta, he was a really nice guy. And I think the PSAMA PET scan has been very helpful to a lot of guys because now they know where the cancer is. And before it was, where is it? So that's been a huge success. And I think I've had eight of them now. I'm still in a study with Dr. Marshall and I'll have them every six months forever. I'm in a forever study with her. And so that was a good one.
And then one of them was Dr. Patel, he did a post prostatectomy safety and opioid safety study. And I think that's a really important one because I had back surgery in 2015. They sent me home with 120 Oxycontin. And when I left Hopkins after my prostatectomy I had seven and I had to call Dr. Patel and tell him how many I used. And I think I used two. So that's really cut down a lot on opioid abuse because you come in with 120 pills and you just keep taking them and all of a sudden you can't stop taking them. So that was a big one.
Well, I love this Dr. Channing's color study, the genetic testing study. I don't know if you guys find that or not, where it's called the PROMISE Study and they use color as the genetic testing agency. And whenever a new guy comes into our group, we always tell them to get your study, get your kit and because it could help you or your children or your daughters because they do the BRCA genes. And so that's a good one.
And of course, I'm in a couple of long-term studies with Dr. Song. And then I was in one this past summer. This past summer? No. In 2024, Dr. Marshall had a study with darolutamide. And so she asked me if I went, because I had never had hormone therapy. So she asked me if I wanted to get in that. So I was her number one patient in that. And I took it for three weeks and broke out in a rash, so she took me off of it. So now I'm in a follow-up study with her and they give me all kinds of testing every six months. I get a nuclear bone scan, I get a CAT scan, get a PSMA PET scan, and all the regular blood tests. And so she says they'll do this forever on me to watch the progression of my disease, because they have a lot of data on me.
I believe, I think I was right that it is a familial disease. My brother had it when he was young. He had surgery. I didn't know anything about prostate cancer at that point. It was 2004. And I was 55, he was 52 when he had surgery. So I don't know anything about his case. I don't know what his Gleason score was or anything else. And I've told my son, told my three grandsons that they've got to get tested starting, I think they get tested at 40. And I think Dr. Walsh's latest book says, "If your PSA is more than 2.5, you got to go see a urologist." And so they're all aware of that. And I did the PROMISE study and I didn't have any mutant genes, so that was good.
So yes, you really do have to take care of the rest of the people in the family too. Sometimes in our group, guys say, "I don't know how to tell my son." I said, "How do you not tell your son?" "Well, he's 50. He's a man." I said, "Well, he is a man, but he's still your son. He might be at risk of having prostate cancer and not know anything about it." So, it's a very good group I'm in, those guys, we really help each other.
You want to say something? Let her say something.
Kathy Kruger:
I'll have to pull my chair in and give him a hug. So he's mushy. He's a crier. I call it happy tears though, because it's not like he's sad. It's just touching and emotional.
Well, it was terrible. I didn't want my husband to have cancer. I thought if you got cancer, you died. I mean, I had lots of misconceptions. Looking back, I feel like I probably could have asked questions and have gotten answers, but I didn't know what questions to ask. I relied on him a lot because he was working on that PhD. He was used to research. He loves reading studies. He likes numbers. All the stuff that I don't like, I would just rely on him to ... He would say, "Read this chapter of Dr. Walsh's book." I would read that kind of stuff, like a layman could understand it.
But I was scared all the time. I was always scared. I was just waiting for it to hit and waiting to get that last bit of bad news. So it hung over heavy. You want to just have fun and enjoy your family and make plans and whatever, but it was a big wait for a long time.
Jim Kruger:
And we've been married 56 years, so we've been through a lot.
Kathy Kruger:
Yeah. Right. So we were just kids. We grew up together. We've just gone through everything together.
So going back to me and my feelings and whatever, I can just remember being, after Jimmy's initial, his first surgery, going back for the results, which I thought they were going to say, "We got it all." I thought you went to the hospital, you got an operation, they got it all and then you're okay, but that wasn't it. And on top of it, they said the type of cancer you have is very aggressive. And I can see the doctor's face right now, I can see his lips, I can see those words coming out, very aggressive. So to me, that meant it was just something was going to happen really quickly.
Then time goes on and I'm like, I'm thinking we're incredibly lucky that this very aggressive hasn't taken him from me. And it really wasn't until meeting with Dr. Marshall in the past maybe two years or whatever, I found out that it can be very aggressive, but at the same time, it can be slow growing. And he's been excellent as far as all his follow-up appointments, all his blood work, he does it right on time. So I didn't have any worries about he would be neglectful or anything. But that was a big thing. To me, that was like a misunderstanding. I didn't know the question to ask. I didn't know what very aggressive ... I assumed what I knew would to be very aggressive and I was wrong about that.
So I don't know how doctors can explain it better. I feel like you have limited time with doctors. And I felt like the doctors we were used to, even how they usually are they usually are standing as you are in the exam room with them, you know you only have a couple minutes with them. And with Dr. Marshall, she just pulled up a chair and sat right down across from the two of us and spent all this time talking and I felt comfortable. Usually I rely on Jimmy to ask all the questions or whatever, and I'm just writing stuff. But I felt comfortable with her. I just felt like it was very conversational with her. So to me, I don't know how you find a more wonderful doctor.
Jim Kruger:
We love Dr. Marshall. We loved all of them.
Kathy Kruger:
Yeah. And I heard what he was saying about the nurse practitioners. They have been so fantastic because I feel like they do have time they can spend with you.
Would I have read it? I'm not sure. I probably would've made him read it first and then he would say, "Okay, here's one you're going to get." That type of thing. Right. Yeah. And I felt like his men's support group, which he went to one meeting and I think he thought that was it, you just go once, you get some information and that's it. Then eventually he started going back more and more. But it's a men's group and I want it to be for the men, but I feel like maybe there should be something for the women, the supporters, that they would have questions, they would feel more comfortable talking to other women. I don't know if there is such a thing. I don't know. Is there?
Jim Kruger:
We do it once a year. We have a party at the guy's house-
Kathy Kruger:
They have a swim party. We talk about other stuff, we don't talk about prostate cancer. You get sick of talking about prostate cancer. You want to do something fun at the pool.
Jim Kruger:
When a new guy comes into our group, we say, "This is a good time to have prostate cancer," because so much research has happened and so many advances in our treatment and their diagnosis and treatment. And before, I think it was 1992 when they designed PSA, her next door neighbor's father, he just died from prostate cancer when he was 65 years old and he didn't even know he had prostate cancer because now just since I got diagnosed in 2017, what do we have? We have perineal biopsies, we got PSMA and we got, what's it, lutetium whatever, that'll actually go and kill it. And so yeah, I think this is ... I hate to have a good time to have cancer, but this is a good time to have prostate cancer because there's a lot of good research being done thanks to you guys funding a lot of it. We really love our little group we have, and I don't know how many of those exist.
It's called Man2Man, and we're in Columbia, Maryland, and we meet the second Wednesday on Zoom, and then the third Thursday that we have a meeting at 50 plus center, and it's just guys get together, talk about it, and talk about your journey. And if a new guy comes in, we give one of Dr. Walsh's books, and we just started doing that a couple months ago. A couple of us each bought three books and are giving them out to the new guys, and with the intent that it's a lending library, it's not a giveaway, it's a lending library. And then there's a lot of places you can go for information, and we give them that on a piece of paper. So yeah, it's good.