Howard Hertz shares how educating himself, seeking expert opinions, participating in prostate cancer support groups, and advocating for personalized care helped him navigate recurrence and make informed treatment decisions over many years. He emphasizes the importance of understanding your disease, asking questions, staying engaged in treatment decisions, and using advanced imaging and expert guidance to tailor care to your individual situation.

Howard Hertz:

Okay, so I am 80 years old. I've been retired for over 20 years. I was a criminal lawyer at one point, then I went into the fashion business, and then I became a business consultant to an architectural designer. But I stopped all of that really in the early 2000s and have just been trying to enjoy my life. My interests are actually primarily in Buddhist psychology and I've been a student at a local college studying sort of a secular version of that psychology along with parallels in Western philosophy and science. So that's been my primary interest and that's taken me into various practices, including meditation and other things to sort of quiet the mind. We used to travel, myself and my wife. I'm married. I don't have any children. We used to travel quite a bit every year until 2018. Then the pandemic stopped travel for us for a while. And we live in Berkeley and enjoy our life here very much.

So my journey started in 2007 when my local urologist saw an uptick in my PSA and suggested I do a biopsy. And he at the time was the head of the local hospital urology department. That hospital is Alta Bates in Berkeley. So he did a biopsy and it came out negative. I didn't trust that because I had already been on Us TOO and I realized that you could have a false negative. So I did some research and I found that there was a test that was available that predicted the likelihood of having a positive test after a negative test. So apparently, they were at the point where they could figure out that there were data points that would indicate that if you had another biopsy, and maybe with more cores, you would actually find cancer.

So I had to call the sales rep for that test and have him send it to my doctor. The doctor gave me the test and sure enough, it showed a very high likelihood that in another test, another biopsy, I would show positive results. And I then did some further research and I found a biopsy kit that was far more extensive than what my urologist had used. I think it was either 16 or 24 cores. And sure enough, my urologist did another biopsy and it came out positive with a Gleason 3+4.

So at that point, I began to talk with my urologist and I was already aware from Us TOO that many men were turning to robotic surgery, which had just been introduced by the company that made the da Vinci machine, which was the robot that assisted in the surgery. And that machine was developed by a company, I think, called Intuit that's very close to here in Silicon Valley. So my doctor, my urologist said, "Well, I think you might want to consider doing open surgery," and nobody was talking about active surveillance at that point, at least with these local urologists. So the program was you're diagnosed with cancer, we haul you into the hospital, you have to go through this painful open surgery, and then we wait and see what happens. That was the program. I wasn't satisfied with that so I went to UCSF and I made an appointment with Dr. Peter Carroll, who at that time was already considered one of the leading prostate cancer oncologists in the United States.

So Dr. Carroll saw me and unfortunately was pulled out of our visit because of some surgical emergency. But before he was pulled out, he said to me, "You may want to consider active surveillance because your cancer is relatively small. Your Gleason score is not terrible. So you could wait before treatment, but I would hear none of that because I wanted it out of my body, as a lot of men do, and there wasn't as much known at that point. They hadn't gathered the data on active surveillance. I forgot what it's called now. It's called something else. But anyway, it was called active surveillance. So what I did is I decided that my local urologist was just out of the loop. He didn't know what was going on. He tried to tell me that there wasn't a big difference between robotic surgery and open surgery and I knew that wasn't true, that there were people who had robotic surgery who were up two days later walking around the block and there were people who had open surgery who were in bed in great pain for several weeks.

So I lost confidence in my local urologist and I decided, "What I'm going to do is I'm going to do robotic surgery." I also, at UCSF, went to see Mack Roach, who was the leading radiation oncologist there, and he spent an hour with my wife and I and he said, "Normally, I'd recommend radiation. But since you have," I forgot what it's called, "BHP, difficulty urinating because of blockage in the prostate," he said, "in your case, surgery would probably be the better option." So at that point, I thought, "Okay, I gathered from Us TOO that the best robotic surgeons with the most experience were actually in the Midwest and on the East Coast."

So I called Intuit, the company that makes the robotic equipment, and I was very lucky to speak with somebody there who said to me, "Look it. If you're considering this, you want the most experienced doctor you can have." It turned out that Peter Carroll had just started doing it, but he had only done 50 of them. So I said, "Well, who's the most experienced person on the West Coast?" and they said, "Dr. Kawachi at City of Hope. He has done 1,200 of these robotic surgeries." So I took myself down to Pasadena, saw Dr. Kawachi, and set myself up for robotic surgery. I had robotic surgery in October of 2007. The pathology report showed that there was no positive margins and that the actual Gleason score from the pathology report was 3+3 so I figured I was home free.

Until about five years later after periodic testing, lo and behold, I had a PSA, 0.01. Then three months later, 0.02. So I was really a bit freaked out about that because I was already aware that that was an indication of recurrence. So I went back to UCSF and I saw Peter Carroll and he said, "Well, we'll monitor this and we'll see what happens, but don't rush into any treatments yet." So we monitored it. We began monitoring it and I saw my PSA over the next few years climb up to 0.1, 0.15, and then when it got up to 0.2, which is the official point of where they declare recurrence. And they declared it 0.2 because that's what was voted on at some convention of prostate cancer oncologists. There were many oncologists who said, "Well, 0.2 is really not enough," and others said, "Well, you should really undertake additional treatment below 0.2," but 0.2 was the standard everyone was using and the standard treatment for recurrence was salvage radiation. So of course, that would've been recommended by most oncologists.

And Peter Carroll said, "Okay, I'm going to send you to see a radiation oncologist at UCSF," went to see the radiation oncologist and sure enough he said, "Yes, we need to do salvage radiation to the pelvic area and we recommend two years of hormonal therapy." So I went back to see Peter Carroll and he's a very intuitive doctor. He's a doctor who has enormous clinical intuition. And he said to me, "This is more than the numbers. I wouldn't do anything yet. I would just wait and see what happens because this is pretty heavy stuff doing two years of hormonal therapy and you don't even know how aggressive this cancer is." Even though Peter Carroll ran the tissue from the pathology lab at City of Hope and they came up with three plus four on that tissue, even though the pathologist came up with 3.3, Peter Carroll said, "Let's just wait and see what happens." So we did wait, and that was already probably around 2015, and my PSA kept climbing.

So by 2018 already, it was up to 0.5 and Peter Carroll suggested maybe I would want to participate in the research program that Dr. Tom Hope had undertaken at UCSF in PSMA PET scanning with a Gallium-68 tracer. So I said, "Yes, let's do that." So they did that and they came up with uptake in one lymph node and an amorphous area near a psoas muscle. So after that, it was recommended that I see another radiation oncologist and I went to see Felix Feng, who's the one who actually connected me with you. And Felix Feng, I mean, he's brilliant, but his recommendations are, and I didn't realize at the time, they're standard of care. So I didn't understand standard of care, that you fit into standard of care, this is the treatment you get.

So Felix Feng said, "I can take that lymph node out with CyberKnife. I can take the cancer out with CyberKnife, the uptake that we saw on the PET scan. I can take it out without doing anything else and we can see what happens." So he did that. Five treatments, easy, no pain, no nothing, and he took it out. But my PSA didn't go down very much so he was quite concerned. I think he had gone from 0.3 at that time to 0.25 and he said, "We should have seen more so there's something else going on." And we did know that there was uptake in this amorphous area, but it didn't have any anatomical correlate. So at that point, he said, "We can just wait and see what happens or we can proceed with more radiation," so we just waited. And all of a sudden, I realized that PSMA along with PSA was a great way to detect whether something actually showed up on the scanner.

Meanwhile, I had joined two prostate cancer support groups, one at UCSF and one at John Muir, which is a hospital nearby in Walnut Creek, and in those support groups I really learned a lot. But one of the things I learned was you really have to know enough to engage your doctors at a level that they're going to talk to you as they would a professional. If you just sit there like you're in the audience waiting for their recommendations and doing whatever they follow, you're missing a real opportunity. And many of those men, by the way, who were the most knowledgeable, including Bruce Zweig, by the way, who I referred to you, were seeing Dr. Mark Scholz in Marina del Rey. Why? Because Mark Scholz was not connected with the teaching hospital, he was not bound by the so called standard of care that the legal department shoves down the throats of all these doctors who work with the teaching hospitals, and he had done an enormous amount of work with prostate cancer patients and was really probably considered certainly on the West Coast the leading prostate cancer oncologist not connected with a teaching hospital.

So I went down to see Mark Scholz, flew down to LA, went to see him, and he said, "Look it. First of all, you have to be realistic about what you have. You have an indolent cancer. Yes, it's gone up. Yes, you've had it in the lymph nodes. Yes, technically you're metastatic or regionally metastatic, but you have to look at the whole picture. This is an indolent cancer. It's growing very slowly. There's no reason for you to do anything right now. Just wait and let's see what happens." So that, of course, was music to my ears. So I waited, but my PSA kept going up from 0.3 to 0.4 to 0.5 to 0.6, and then all of a sudden it leaped from 0.6 to 0.9 and that really freaked me out. So I went to see my prostate oncologist at UCSF. God, I can't think of his name right now.

Friedlander and also Mark Scholz. So Friedlander said, "Of course, standard of care is full pelvic radiation, two years of hormonal therapy." Felix Feng, same story, "Full pelvic radiation, two years of hormonal therapy." Felix Feng then took it to the tumor board at UCSF and they all came back with the same recommendation. Mark Scholz said, "Look it. I've had many patients your age in their 70s with relatively indolent cancers, and even though your cancer jumped up, your PSA jumped up from 0.6 to 0.9, do another PSMA test. It may be another lymph node. But what I suggest you do is what I've done with many men your age. I do not give them full boat hormonal therapy. I give them 50 milligrams of Casodex, which is one-third of what the normal dose would be, and they do fairly well. They don't have many side effects and in most cases it's fine and they don't have really a lot of problems. And if they do, I can put them back on a low dose of hormonal therapy." So that sounded very good to me.

So I went to see Felix Feng and I said, "Look it," and Felix Feng considered me a very knowledgeable patient, which is why he recommended me to you. And I said, "Look it. I don't want to do standard of care. I'm not interested in what's best for most patients. I'm interested in what's best for me with all my data points. And my data points tell Mark Scholz I can get by on low-dose hormonal therapy. And as far as radiation is concerned, I'm willing to do radiation to the pelvic area, but I don't want it in the prostate cancer bed because it's too close to the bladder and the rectum. And I don't want to cause a bunch of problems because I was already suffering from minor incontinence, so leakage." So Felix Feng, who's really terrific, he said, "Ordinarily, I would say, 'No, I can't do that,' but you're an informed patient. And if that's what you want to do, knowing the lay of the land, knowing what the options are, I'll do that."

So I went ahead and I took five months of hormonal therapy. And after the first month, I did pelvic radiation, but not to the prostate bed. And Felix Feng had said to me, "I'm going to feel like a fool and everyone's going to think I'm a fool if I go along with radiating your pelvic area, but not the prostate bed, and then you have prostate cancer that comes back to the prostate bed." So I said," Well, can you then do spot radiation to it?" He said, "Probably, but that's not standard of care." So I had already moved away from standard of care and I really had a lot of confidence in Dr. Scholz because of his clinical intuition and because he had many, many cases of people like me and it's not anything at UCSF they would even consider.

So when I saw my medical oncologist at UCSF, Dr. Friedlander, he said, "Oh, no. 50 milligrams of Casodex, that's nothing. That may just incite the cancer and we really wouldn't do anything like that. But again, you're an informed patient and I realized Dr. Scholz is not to be disregarded. And if that's what you want to do, I'll go along with it. So I did that. I did another PSMA scan and sure enough there was another lymph node that had uptake. Felix Feng proceeded. This was in 2021. In August, I started my hormonal therapy and I did it for five months and I did the radiation, the pelvic radiation. So I completed the hormonal therapy in December of '21 and so far it's been fine. I have not tested. My PSA is basically non-detectable at the moment, but it could come back at any time.

But as I look back at the experience, I learned an awful lot, first of all, from the support groups and from the men who are willing to go against the mighty powers of UCSF because they understood that these doctors were bound by standard of care and they operated within those parameters. And if you wanted anything else, you wanted a more innovative treatment, not to be crazy, but a treatment based on at least a lot of anecdotal evidence, you got to get away from these teaching hospitals. So I look back at that and the experience was good. Now if next month my PSA jumps way up and I do another PSMA test and lo and behold there's cancer in the prostate bed, I will have made a mistake. But what I've done so far is I brought myself to a state at the age of 80 where I do not have a PSA and I did not have to go through the worst of the side effects of hormonal therapy, even though I did have some side effects. Hot flashes, cold sweats, and I still have some of those issues.

And gynecomastia, which is sort of the swelling of the breast, which has alleviated somewhat. Rather mostly actually, I don't feel it now. So I can't even imagine what I would've gone through if I had taken full boat hormonal therapy. So that's pretty much what my story is. And it's great to have these doctors at the teaching hospitals, but ultimately you have to make your own decision based upon your data points and not what's best for most men. But there are very few men who understand that and I wouldn't have understood it had I not heard it from people who were quite smart.

Many of these men in my prostate cancer support group at UCSF were computer scientists from Silicon Valley. They looked at all the studies. They were on PubMed half the time looking at all these studies, evaluating the data themselves because they had the capability of doing that. So I allowed those men, the best of them, to really help guide me in this and that was enormously helpful. So there's great advantage. And then of course, the Prostate Cancer Research Institute and Dr. Scholz and their many videos were also very, very helpful. And then Scholz published a book, I forgot what he called it, two of them now, but one about three or four years ago, which was also very helpful, sort of an anthology of what he considered the best doctors had to say about some of these topics.

When you first get the diagnosis, you figure you're a dead duck. That's the way you feel so you don't have any context when someone says you have cancer. So in prostate cancer, as you know, like the other hormonal cancers, are much slower growing. It's not like having pancreatic cancer or kidney cancer or liver cancer where you are a dead duck. But in prostate cancer, it's not that way, but it takes a while to become familiar with it. Some people say it's like the five stages of grieving. It's that kind of thing and you go through these different emotional stages. So that was the initial fear.

Then there was when I had recurrence in 2012. That was a fear. And then when I saw my PSA go up from 0.5 to 0.9 in a relatively short period of time, that really freaked me out. But at least I knew at that point that I had a good medical team and that the likelihood of making a good decision was high and that I was aware that I didn't want to be over-treated, but I also didn't want to ignore something that could come back to bite me hard.

I'd say a prostate cancer patient, the greatest anxiety apart from a diagnosis and a sudden leap in your PSA is just awaiting the results of a PSA test. So every couple of months or so when I'm going to do a PSA test, I start thinking about it maybe a week or two in advance and I start feeling anxious. "What if this test all of a sudden has me back in recurrence and I go from less than 0.015 to all of a sudden 0.01 again or 0.02 or something worse? Then I got to deal with this again." Right now, it's on the back burner, but there's no man I know in my groups who doesn't have his heart up in his throat as he's awaiting the results of his PSA test. So you're living with that anxiety all the time, but it's the same anxiety we live through with regard to many other things.

So we all know that we're going to die, but nobody accepts that emotionally and we're surprised by all of these things. And of course at my age, at 80 years old, you know that one of these things is going to hit you. You don't know what it is, how serious it's going to be, how painful and horrible the treatments are going to be. You don't know any of those things. So that's the source of enormous amounts of anxiety. So I would say prostate cancer for me at this point is just along with all the other potential diseases that could befall me because the body is worn out.

I had an interesting experience, I also have problems in my cervical spine, with stenosis. And I went to see a doctor at UCSF who looked at the MRI and said, "Oh my god. Look at this." He said, "You better not get in any kind of a car accident or you're going to be in serious trouble if your neck gets hit." But he showed me this and I was looking at the image of my neck and it really hit me emotionally. This is me. There was an article the other day, I think, in The Atlantic about this. As you get older, you really don't think you're of that age. You think you're of an indeterminate age. So I'm 80, but most people feel like they're 20% less than what their actual age is. So I do feel like I'm in my mid 60s, not that I'm 80. So this is a pretty common thing to feel that you're younger than you are. But when you look at those images on an MRI, you are staring at deterioration, you're staring at your own demise and that ain't easy. And that stayed with me.

And I thought, "Okay. I'm living in this fantasy world that this isn't happening, but there it is. There's the evidence. I'm looking at it." So those are the anxiety points, I think, when you actually ... Because it's even when we look at ourselves in the mirror. Do we actually see what other people see or do we see sort of a modified version? Because we know perception is not just what you see. It's how the brain interprets what you see. So yes, a lot of anxiety, but the anxiety has been folded into the anxiety of being 80 years old and knowing that you're facing these things.

Well, completely. I mean, I don't have any kids, but my wife has been very supportive. My brother was diagnosed with prostate cancer. He's four years younger and I was able to help him and direct him and give him an overview of what the scene looked like and what kinds of decisions had to be made and the rest of that. But very supportive and the support groups have been great, really great. John Muir does something interesting because they have two support groups: one for people who are recently diagnosed and one for people who have advanced prostate cancer or metastatic prostate cancer. And that group is very good and that group starts out once a month. They have a meeting and that starts out with actually a conversation with a very well-known doctor in Seattle who's retired, a prostate cancer oncologist named Dr. Weber. I forgot his first name. And so he actually gets on for the first hour of that support meeting and he answers questions. And people will say, "My doctor said this and I'm considering that. What do you think, Dr. Weber?" It's just terrific.

So that's the kind of thing that can go on in these support groups and some people are really innovative. And I've tried to get San Francisco a support group which is facilitated by somebody who I knew from the John Muir group, Nathan Roundy, and I've tried to get him to recruit doctors at UCSF to participate in the support groups as well. UCSF used to do an annual event for prostate cancer which was very good. It was a two-day event and they had all their heavies from the prostate cancer department participating so there was a lot of very, very good information to be had in those sessions. So I find myself now listening to the prostate cancer research videos and their meetings twice a year and you always pick up something. That's the interesting thing about this. You always pick up something. You may listen for a half an hour and you know most of what's being said, but there's always something new. So that's what continues to be very helpful, I think, in these support groups.

A couple of pieces of advice. First of all, know as much as you can about your disease. And Scholz's book is really superb, I just can't think of the name of it right now, and it does the job and it really gives you a context to understand your own disease. So that's the first thing is to understand what is your disease, what are you actually dealing. The second thing is to take yourself to the best possible centers for prostate cancer. UCSF is now rated among the top three or four in the nation. But even in going there, keep in mind that they're operating under standard of care. So you may not get a treatment that doesn't have as many adverse side effects because of standard of care that might've worked for you equally well.

Then you have to see somebody like Scholz and there aren't too many Scholzes around. So I think that men would do very, very well, who are starting off in this, in listening to those videos at the Prostate Cancer Research Institute website. An enormous amount of information there. And I think if a person were willing to commit the time, and you have to be willing to commit the time and attention, you can learn what you need to learn to negotiate your way through this. But otherwise, you're just going to go along with whatever your doctor recommends and there's a lot of bad information out there. I can't tell you the number of men who come to the support groups who have Kaiser and it's clear from the way they talk about their interactions with their doctors that they are not getting the best advice, nor do they necessarily have access to the latest scans.

I mean, there were a couple of people who were at Kaiser in my support group who were very, very smart and they finally managed to get their doctors to send them to UCSF for the PSMA scan because Kaiser didn't do it. But that's a big exception for Kaiser to be willing to spend the money to send a patient to UCSF for a scan that they can't do. But these patients insisted and said, "This technology is out there. I want it." This is an important scan to understand, "Where is this prostate cancer exactly before I undertake an over-targeted treatment?" So the more you can learn, the better. So you have to make it your business to learn as much as you can about your disease and then you'll find that you can engage your doctors at a level where you're going to get much more from them if you can ask the penetrating questions that might not occur to them to address.

Well, I've never really thought about that because it would have never occurred to me not to share my diagnosis. So I don't know. I mean, I guess there are men who don't share their diagnosis. Like a lot of men, they don't like going to doctors and they're afraid. And so I don't know. I mean, that's not within my realm of experience.

Well, in the beginning, I mean, I just routinely tested it every year as part of my physical examination, but that was before they had the ultrasensitive tests where they could go down to, I guess, three zeros or however much they go down. I mean, when you see 0.015, but under the old way of testing, it might have been 0.01 or 0.02. So I've been testing all along. I mean, PSA has been the primary test for everyone to monitor their prostate cancer, but now we have PSMA PET scans. So the two of them together are really helpful because if your PSA leaps up, you immediately go for a PSMA PET scan and they can see generally where there's uptake.

Now PSMA PETs were part of a research project at UCSF when they started up about four years ago or so, but now they're using another substance which is much easier. Another tracer, a nuclear tracer which doesn't require the same kind of storage. I think it's called [inaudible 00:37:18] or something like that. So everyone's doing PSMA scans. Even Kaiser's doing PSMA scans now. So all of a sudden, by not using this nuclear tracer Gallium-68 which was so hard to handle, they now have a tracer they can use giving them the same quality results, but can be used ubiquitously. So it's all over, everyone's doing it, and it really helps in assisting doctors to evaluate what you might do at that point in your journey with prostate cancer.