Bruce shares how seeking expert opinions, participating in clinical trials, and taking an active role in researching treatment options helped him navigate high-risk, lymph node-positive prostate cancer. He emphasizes the importance of staying physically active, maintaining healthy lifestyle habits, engaging with support groups, and working closely with an experienced care team to make informed decisions throughout the prostate cancer journey.
So I'm Bruce Zweig. I'm 73 years old right now, and I'm kind of retired. During COVID, I sort of stopped working, because the people I was working for stopped operating, and I spend my time now, I'm sort of part-time as a musician actually. I play in a few different bands. I have a regular group that I play with at a cafe in San Francisco, and then I do some work as a volunteer at UCSF to help patient services to help to make sure that the patients are getting full consideration while UCSF pursues its standard of excellence in treating patients and research, and then other than that, I'm single. I've been in a significant relationship for about eight years, and that's kind of a summary right there, I think.
It was in September of 2017, and it took a little while to get a biopsy. They had just sort of approved the multi-parametric MRI exam, which can sort of help people to see where the cancer is within the prostate. So it took a while for them to have the machine that hooks up the MRI to the machine that does the biopsy. It's called a fusion, where they take the two images together, but anyhow, so I'd gotten the MRI a few months before and then this was at a local urologist.
He was actually a pioneer in doing this at the local level, and so they did the biopsy, and the results came back as a Gleason five plus four, which is Gleason nine, which is a very high risk, high risk of recurrence after initial treatment kind of thing, and that was scary when I heard that. I was kind of in shock, and I was getting all sorts of advice from people. "Cut it out. Just get it out right away. Don't waste any time," and I didn't jump on that.
I called UCSF. My urologist had ... I was connected slightly with them, and I also went to another place to talk to a radiation oncologist as well that was part of that practice. At UCSF, I met Matt Cooperberg, and he said, "Look, you don't have to rush into treatment." Even with a Gleason nine, I think there had been a study or something that said that treating sooner or later didn't seem to matter, and had an opening for surgery in January and this was... I think it was October by the time I saw him. So it was a couple of months afterwards.
He said, "Just don't worry about it, and we'll continue to talk about this," and then so I saw him and then I saw the radiation oncologist, and he was kind of reassuring. I mean, it was Gleason nine, there's no guarantees on the first treatment that it's going to last forever, and then Matt got me into a clinical trial of the PSMA PET scan, the PYLARIFY one that Peter Carroll was running. So I signed up for that, and they did that scan, and that was at the end of December of 2017.
It found that, I think, about 10 lymph nodes had become invaded by the cancer, and that was even more scary. Even with the Gleason nine, I had sort of been motivated to learn a lot. It's a real strong motivator. It's sort of an existential, possibly, moment. So I had started reading a lot of things, and one paper I read said, "Boy, the more nodes you have, the lower the overall survival." They had these curves and everybody's doing okay, and then over time, how many people aren't around anymore? And there was like, "Oh, well, the one node, it's okay," and then two, three, four, but once you got over five, things went south pretty fast.
But I kept reading. I kept learning more and more. I started going to support group meetings at this time. There were a couple of support groups that were ... One was really advanced, it was in Silicon Valley, and then there were some others that I went to, and somewhere along the way, I found out about a clinical trial that had just reported that said that for people like me, you can treat us with Abiraterone, Zytiga, right at the beginning.
You don't have to wait till it's castrate resistant or anything like that. Even patients, they gave it to patients that didn't have any lymph nodes, plus the lymph node positive patients and the metastatic patients. It's called the STAMPEDE trial, and it had just come out a couple of months before I got diagnosed, and I saw that and I looked at the diagrams for how people survive if they take the Abiraterone and if they don't, and it was just clear to me that that was what I had to do, reached that conclusion pretty quickly.
Anyhow, so they assigned me to a medical oncologist since it's a form of metastasis and they started Lupron and Abiraterone, pretty much right away, and then there was a question of whether I was going to have localized treatment, whether they were going to treat the prostate or not, but I felt like I sort of had a moment to stop and think about it, because I figured the Abiraterone and the Lupron is going to slow this thing down enough that I don't have to move that quickly. So my girlfriend and I went to Peru, took some trips, kind of enjoyed life. The Lupron and the Abiraterone, they weren't so bad early on in the treatment for a while, and then finally...
At that time, it wasn't clear exactly what local treatment you should have. I was looking into surgery and radiation, but... So I saw Peter Carroll again to talk to about surgery options. They had a new thing, because I had a couple of lymph nodes that they said they just couldn't reach with surgery, but there's this new thing called Firefly, and the infected lymph nodes kind of light up when they're on the DaVinci and it's still a trial, but he thought he could give it a try with that, but since they couldn't reliably get all the lymph nodes, I decided on radiation in my case, and Mac Roach says, "Yeah, I'll go after those lymph nodes. I'm not worried about it at all."
So we decided on treatment with radiation, and then also in the support group... By the way, in the support group, a lot of the guys had a lot of respect for Mac Roach's targeting ability, so that was kind of reassuring, but one of the guys in the support group was really worried about his case, and he said he had also added HDR brachytherapy at UCSF, and then I found some papers and they said, "Yeah, people who get both of them together, the HDR brachytherapy and the external beam radiation, seemed to do better, Gleason nine, Gleason 10, even Gleason eight kinds of patients, if you add the boost, the brachytherapy boost," and so I figured that would be a good thing too.
So I made an appointment with a doctor at UCSF who specializes in that, and he and Dr. Roach worked together, so they figured out a treatment plan, and so I started with the brachytherapy, and I had an oversized prostate, some 103 or so cubic centimeters, and we were hoping that it would shrink like 10% or 20%. It didn't go down that much. So the brachytherapy did cause me to have some urinary problems, because it swelled even more after the brachytherapy, but they've decided since then that if you have over a hundred CCs, they give you a course of methylprednisolone before that.
Anyhow, so I mean, it was difficult though, and then we started the radiation. During the time of the radiation... But I was still feeling okay. I would walk a half a mile of the bus, take the bus to the radiation therapy and take the bus back and walk some more, and people say that to try to get through the radiation and all these things, especially while you're on Lupron, exercise is important. So I think that helped me a lot. I just, every day, take that same walk, and that was part of what I did to try and keep my brain in shape.
I was getting a little foggy mentally, though. I don't know. This is sort of off-topic, but I went to a conference, and one of the speakers there recommended Ginseng tea, especially the Panax kind that is grown in Wisconsin as a good cure for the Lupron haze, as we called it at the time. So I drink some of that every day, it seems to help, and then...
So all this time, I was taking the Lupron and the Abiraterone. The side effects were not too bad, but then ... Oh, and then, so for me, for a month afterward, during the radiation and for about a month afterwards, I was kind of limited going out and things like that. It was like... Because I had to go to the bathroom a lot and kind of had to stay there for longer than normal. So kind of laid low for a while until, I don't know, October, November, something like that, and then things seemed to be okay again.
So then I continued on the treatment of the Lupron and the Abiraterone, and you had to take prednisone too for the full two years until January of 2020, and then I was able to stop taking those, and then it takes a while for them to wear off. So my testosterone didn't really come back. So this is 2020, COVID, that whole time period, and also, I'd had whole pelvic radiation.
That's because of the 10 nodes, they hit those, and then they go around all the other nodes in your prostate, and they give them a dose in order to get the cancer that they can't see yet in case it's there, and at least in my case, I think... Because it lowered my immune system a little bit, because lymphocytes kind of live and come inhabit the lymph nodes, and when you radiate them, you kind of lower their population.
Anyhow, the numbers came down. I was kind of in the healthy normal range at a thousand, but then it went down to 250. So I was kind of worried. I actually rented a place out in the woods for a few months at the beginning of COVID just to be safe, not have to worry about it, but then San Francisco had a low infection rate after a while, so I figured it was safe to come back, and then I think around September, maybe, I started to sort of have close to normal range testosterone, that's in 2020, and then it stayed in the sort of lower side of normal since then.
So that's kind of the story of today, but the nice thing is that my PSA has been undetectable. I get it tested... First it was like every, I don't know, month, and then it was every couple of months, and then everybody was following it really closely, but it stayed down, and then last June, it kind of peaked up just above the lower limit, but then it went down below, then it went above, and it went down below and went down below again. So obviously, it's not increasing very fast, if there is anything there at all.
So now I'm in that, "Well, okay, I'm in remission. Hopefully it's going to last," and I looked at the long ... There was a study and they had an eight-year report on that study that had first described the Abiraterone at the start, and it looked like every year, about 5% of the patients had some sort of recurrence. So I don't think I'm out of the woods a hundred percent yet, but it would probably take a while for it to come back. That's what I'm hoping.
When I first got diagnosed and I panicked, I went on a really strict vegan diet with no sugar. I would look at the labels, "Oh, more than one gram of sugar, forget this," and no dairy and no animal protein. I lost about 30 pounds, and I continued on that pretty much through treatment and for a while afterwards, and then I slowly began to relax a little bit. So fish came back into the diet, and maybe chicken, but I still do what I can to stay on a sort of a vegan or vegetarian path.
I still don't eat any egg yolks. Some people think that's an identified risk, and cooking steak, I used to love to cook steak at a really high temperature, and that's bad apparently. So I had to stop doing that, but you know, vegetables are good. You get something that chops them up, makes it easier to chop them up. You can work them into the diet. So that's the main thing, I think.
Yeah. Yeah. I had to take calcium, and I had a bone density test. It looked like I might even have osteoporosis, and I took Prolia. I think I got one six month injection, but another doctor said, "No, you're okay. You don't really ..." It was sort of borderline, and it does have side effects, but yeah, going to the gym, you have to lower your expectations, and you have to not be embarrassed to just have like one weight or two weights on that pushup machine or pull down machine and just go in and do it anyhow, and I was lucky there was a 24-hour gym not too far from me, and so I would go, and I wouldn't do a heavy workout or anything like that, but I would try to just do it regularly, and I still do that as much as possible. I'm still not back to where I was with the weights or anything like that, but do what you can. There's no shame here.
Yeah. I'm in a few different support groups. I still go to the meetings and so when somebody comes along with lymph node cancer, I try to steer them towards the relevant literature.
Mainly in education was a lot of probability and statistics, so that made it easy for me to like slog through the papers and not fall asleep when it came to the statistical analysis. I was actually kind of interested. I hadn't learned about the medical statistics, the Kaplan-Meier diagrams and things like that, but I understood what they were doing pretty quickly, and I wasn't that great of a researcher in school, but I was so motivated, and then with the internet, you can just lie in bed and do the stuff on your phone before you go to sleep. It makes it a lot easier.
I mean, I worked hard at that once I saw that paper, and Kaplan-Meier curves, it takes a little while. Matt Cooperberg explains a bit, you want to stay above the curve, you want to be ... If the line is on top, that's good. If it goes down, that's not good. You have to kind of spell it out to guys, and I actually went to the GU oncology conference in 2018 after my diagnosis, and I happened to see Nic James at one of the posters, and in the article, they didn't separate out the node positive patients, which I was, from the overall patients, but he said, "Oh yeah, well I have some slides. I presented them at ESMO," and so he gave me his card and sent them to me, and so I've been focusing on that information, but yeah, I found out everything I could.
One thing is, especially when you're dealing with kind of new treatments, just having somebody lay out the sexual side effects and what you can do to try to preserve your sexual abilities once you're done with treatment, if you're lucky enough to be able to quit ADT after a couple of years or 18 months or something like that, try to plan ahead and just talk to your doctor about if there's any advice they can give you about how to keep the tissues flexible and keep the muscles kind of in shape and bring blood to that area, that's something I think people should concentrate on learning a lot about.
We see people like that in the support group kind of really regret having made that choice, and I don't know, every doctor's different, but some doctors maybe push a little too hard sometimes for one treatment or another, and some patients feel kind of victimized when that happens. Nobody at UCSF does that, but you never know. Some doctors are sure that they know what to do.
Yeah, I mean, my hope was that even if the prostate cancer lowers my life expectancy by a few years, all this healthy living that I was doing might add a few years, and hopefully I'll come out even.