SPECIAL BONUS PODCAST with host Liz Graves.
PROSTATE PROS interviews Dr. Marc Peck about his experience with prostate cancer. He describes the ups and downs of his journey starting with his diagnosis in 2001. Join Dr. Peck as he reflects on the past 20 years of living with prostate cancer.
Liz: [00:04] Welcome to PROSTATE PROS. I’m your host for this episode, Liz Graves. For this special bonus episode I spoke with a Colorado physician about his 20-year-long journey with prostate cancer. Dr. Peck’s story with prostate cancer begins back in 2001 with a routine PSA test.
Dr. Peck: [00:26] Well, hello. My name is Marc Peck. I’m a family physician and urgent care physician in Colorado. I’m going to tell my journey, or my story, about prostate cancer, which I do have.
Liz: [00:38] It’s my understanding that you were diagnosed around age 44.
Dr. Peck: [00:42] Back then routine PSAs were still in vogue. So at 43, I got a PSA that was a little higher than expected for someone in their 40s, it was 2.6. Everyone said just watch that, which I thought was fine. But a year later, at age 44, it had doubled to about 5. That’s when my journey began.
Liz: [01:10] What happened after that? What were the next steps that you took to figure out you had prostate cancer?
Dr. Peck: [01:15] The first thing that my urologist said was get a biopsy and I said, okay. It seemed that was the standard of care back then. I was not given any other options. I wasn’t redirected anywhere else at the time. I went ahead and had a multiple core biopsy that showed a 3 + 3 Gleason adenocarcinoma.
Liz: [01:40] Now, Dr. Peck has five kids. He had a lot on his plate and at age 44 was very young at the time of his diagnosis. So when the urologists told him that he did indeed have prostate cancer and recommended immediate surgery to remove his prostate, Dr. Peck agreed.
Dr. Peck: [01:59] Yeah, I rushed right into decisions. I read all about it. I was too young to have prostate cancer. What the heck? This is a disease of guys in their 80s, or at least at that time, their 60s, which I thought was pretty old back then. I fell for the surgical pitch right off the bat. My surgeon said, “Oh, hey buddy, we need to do a radical prostatectomy.” At that time, the DaVinci robotic assist prostate surgery was just in its infancy, so that wasn’t an option at the time. So a radical prostatectomy was pitched to me and I fell for it because they used the key words: “nerve sparing and this’ll provide a definite cure for you with minimal downtime and based on your age, this is exactly what you have to do.” Okay. It sounded good to me. I was not given any other options at all at the time.
Liz: [03:04] Just two months after his initial diagnosis, Dr. Peck finds himself on the operating table.
Dr. Peck: [03:11] I had the surgery at a little hospital west of here with two fine surgeons. That was the beginning of my one way ticket to perdition. Now, being a physician is an invitation to have every complication imaginable. You know, I thought about it, I looked at the age I was at the time and how that carried a more grim prognosis. Surgery seemed to me the best option though I wasn’t given any other options. My fault, I should have gone off and searched for options, but I wanted to get this done.
Liz: [03:49] Yeah, I think that is what happens to a lot of men. It’s frightening. And you were very young when you were diagnosed and all of that kind of plays into making treatment decisions rather quickly, I would say.
Dr. Peck: [04:02] Right off the bat, I had a urinary catheter. I was out of the hospital in three days, I had to have a blood transfusion. I went home and it was a pretty rocky recovery. I remember sitting in my bathtub with my urinary catheter hanging over the side of the tub, when I got a phone call from the urologist saying: “Uh oh, it looks like your cancer was not confined to the prostate.” So I felt pretty awful at that time. He said, “We’ll get through this recovery period and we’ll talk about next steps.” I managed to recover somewhat from the surgery though I was still incontinent. On the plus side I get to wear scrubs so I could hide my Foley catheter pretty nicely and resumed working within two weeks after the surgery.
Liz: [05:02] So, I asked Dr. Scholz to explain how or why this may have occurred.
Dr. Scholz: [05:08] Well of course this is a very uncommon scenario for which we’re very grateful, but I would imagine that the cause would be the rooted in the fact that random biopsies can miss 20% of men with higher grade disease. So I’d assume a situation like this they never did a multiparametric MRI. It’s always good to cross check and make sure that there’s nothing additional lurking in the prostate that might’ve been missed by the random biopsy.
Liz: [05:32] After Dr. Peck’s surgery, he was dealing with incontinence and impotence and was now facing a more aggressive cancer than they had originally thought.
Dr. Peck: [05:42] At that time, the pathology showed that I had tumor spread to the seminal vesicles, which is a pretty messy part of the genitourinary system for a man. It’s a difficult place to excise completely even with robotic surgical techniques. I was offered Casodex, which was part of the androgen deprivation therapy at the time. And of course, Lupron, which everybody knows about. I declined the Lupron, went for the Casodex. I immediately sustained all the effects of androgen deprivation, including breast development and gaining weight and being pretty stupid on that. But I kept up my activity and my practice. At that time, I sustained a pretty big decline in my practice. I was unable to continue much of my practice style, which was in the operating room, delivering babies, working in a small ski trauma center. All of that started to fall away as I was struggling with the disease. Then continued problems post-surgically, which were incontinence, and of course, impotence right off the bat. There was apparently no nerve-sparing for me.
Liz: [06:58] During this time, his PSA stayed about four. He continued on Casodex for about a year and a half, but in 2003, his PSA began to rise again, having already gone through surgery and experimented with hormone therapy, Dr. Peck went to seek the opinion of an oncologist.
Dr. Peck: [07:18] He said, you need to get some radiation. At that time, the type of radiation was called IMRT. Where you get some tattoos on you, you have a mold for your pelvis, then for the next several weeks you have a daily radiation treatment. He also asked me to quit being a baby and go on Lupron right away, which I was still reluctant to do. Oh yes, I had already gone through the postsurgical side effects and the Casodex side effects. And then whatever tiny bit of continence I had was abolished or eliminated by the radiation therapy. The thought of going on yet another medication that would essentially castrate me was daunting at the very least. I would visit my urologist who would give me a fairly grim prognosis at every visit, three or four times a year. I would complain about my lack of erections. We went through all kinds of medieval sorts of methods to fix that: injecting my penis, putting painful pellets in my urethra and trying to talk about how to manage incontinence other than using incontinent diapers. Me, being one of those people that always made fun of Depends, now I was a true supporter of that brand. And life went on. I continued trying to be as active as I could. I was riding my mountain bike, trying to stay active. But as time went on I started to shed all of my fun family practice, emergency surgical practice style until I was just doing some family practice at a much reduced schedule. That continued on for a few years actually. I still tried to battle and tried to avoid my urologist as much as possible because most of the time when I went to see him, he goes, “yeah, you know, you’re going to die in five years.” Well I didn’t take well to that sort of news.
Liz: [09:29] He’s telling you you’re going to die in five years. It’s now been almost 20 years now since your diagnosis. Still maintaining hope, Dr. Peck continued to search for options. In 2010, his oncologist ordered a scan to test for bone metastasis.
Dr. Peck: [09:48] I was just dotted with a bone metastasis. At that time, the recommendation was chemotherapy, androgen deprivation therapy, Lupron, and a bunch of other stuff. Being a physician, I said, I don’t want to do any of that. So I did what a lot of desperate cancer patients do, I went looking for alternatives. I found a place in Tijuana. Yeah, I know all the listeners are going, “What? Really, Tijuana?” Yeah, it was a place called Issels. They had a pretty good marketing program and all kinds of advocates and anecdotal patient survival. So I went and cashed out my retirement plan. It was like $40,000 and my wife and I went down to Mexico. At that time they did all kinds of strange things. I got bone marrow infusions of interleukin and vitamin C injections and a complete change in my diet and elimination of alcohol. I don’t know, it was pretty messed up for my stay there which was about a month. But my PSA at that time, I was making a joke with myself because it was in the 850 range, I was trying to get it to 1,000 just to see if I could. But after my trip to Mexico, my PSA dropped down to 35. Now I don’t want any of the listeners to go jump into that sort of treatment plan. That is an act of desperation. There were a lot of desperate cancer patients where I went and many of them died while I was there. So by no means is this a recommendation to go do that.
Liz: [11:43] This part of Dr. Peck’s story reminded me of Ralph Blum. Blum was Dr. Scholz’s coauthor of Invasion of the Prostate Snatchers. Blum wrote the following about the search for alternative options: “Faith begets hope. Hope enables belief. Belief empowers healing.” And I see this same hope, or as Blum refers to it as faith, in this part of Dr. Peck’s story. In 2010, after Dr. Peck returns to the U.S. he finally decides it’s time to go on Lupron. With the Lupron keeping his cancer in check, Dr. Peck shifted his focus to managing his side effects.
Dr. Peck: [12:24] I continued to exercise as much as I could. I had absolutely no continence. So I used pads and urinary clamps and all sorts of medieval torture devices to keep me relatively dry. I went to a urologist in Denver and they put a pump in to at least allow me erections, and I also tried to get an artificial urinary sphincter. All of these are controlled with little gizmos in your testicles. They’re little sacks filled with normal saline. Then all the pump devices are internally implanted in you to allow you to have some element of continence and some level of erectile function. So the erectile function worked fine, the continence devices did not. I had several revisions on those. After that I sustained every single side effect of Lupron and androgen deprivation therapy. I melt pretty much every 20 minutes. It makes my patients nervous when I walk into the room sweating, they always think I have something to hide, you know, and I’m just mopping my brow going, “Oh yeah, you’ll be fine.” Then my oncologist started to throw out all kinds of cool stuff like going on diethylstilbestrol.
Liz: [13:48] Diethylstilbestrol is a synthetic estrogen that is used to treat hot flashes. It’s not used very frequently today as it tends to cause blood clots and they are safer estrogen medications available.
Dr. Peck: [14:03] I tried cyclophosphamide with steroids, really didn’t do much.
Liz: [14:08] Cyclophosphamide is a chemotherapy drug. It is not administered very frequently today because modern chemotherapy drugs like Taxotere and Jevtana are huge improvements over the older types.
Dr. Peck: [14:21] I kept having problems with my urinary sphincter and went back to the University of Colorado on the urging of my old urologist, who did the prostatectomy to see the guy who does all of these artificial urinary sphincters. Then all hell broke loose there. Of course I was promised an outpatient surgery and a few days later after surgery in 2012, I woke up and I was informed that I nearly lost my leg because of complications of blood clots. This is a common association with any cancerous state because your blood gets pretty thick. I’ve had multiple surgeries to try to increase or allow blood flow into my leg, which were unsuccessful ultimately. I wear a compression garment that goes up to my hip, I’m on injectable blood thinners daily, because warfarin are the usual vitamin K poisons don’t really work on people with cancer. That put a big 90 degree turn in my activities. I really dropped my practice down to three days a week and seeing only urgent care.
Liz: [15:31] You had to make a lot of lifestyle changes and professional changes. Was that difficult? Did the emotion of having prostate cancer change your life? Did you experience any depression or feelings of isolation?
Dr. Peck: [15:48] I was a grumpy guy. It was hard on my kids. They were expecting me to become a cloud any minute. I was going through a pretty awful divorce. I became an insomniac because of hot flashes and constant urination. Depression, oh yeah. I was on antidepressants. You know, there’s the worn out statement, whatever doesn’t kill you makes you stronger. Wow, I guess, I don’t feel stronger. On a plus side it made me, maybe, a better physician. I was certainly a lot more thoughtful and understanding, and I was able to help some men through their decisions in prostate cancer and trying to steer them towards a more sensible path and to not settle for one opinion. That was a Lance Armstrong statement when he found out he had testicular cancer, he kept going until he found sort of the right choice for him.
Liz: [16:48] Then Dr. Peck’s PSA started to rise again and his bone scans showed increasing mets.
Dr. Peck: [16:56] At that time, I went down to the University of Colorado and had a cancer trial of smallpox, and some other potions that I was injected with. Well, it’s actually a variation of smallpox—it’s actually fowlpox. I did that for several weeks. Then I was started on another androgen deprivation therapy called enzalutamide. I love the capsule on that because it says “the enz” on it, it doesn’t say “the,” it just says “enz.”
Liz: [17:22] Enzalutamide is also called Xtandi and we discuss Xtandi in our episode Hormone Therapy TIPs.
Dr. Peck: [17:31] At that time, I started using estrogen patches. From being an NRA member and, you know, kinda shooting guns and stuff to buying curtains and looking at wallpaper was quite a change. I didn’t notice right off the bat until people started saying, “Hey man, you’re not that guy anymore.” Yeah, not being, not being the guy I was and becoming somebody different was strange. I can tell all you guys out there who were afraid of losing their testosterone, it’s not the end of the world. It’s just a different world. The world of an 8-year-old boy, mind you. You know, when I now look at TV shows with people kissing, I don’t know what they’re doing. I don’t know why they’re doing it. It’s all yucky. Pretty much, I have had a stable course since about 2016. Staying on enzalutamide, something called Xgeva, which makes my bones pretty sturdy, and Lupron every six months.
Liz: [18:30] Xgeva is an oral agent that strengthens bones and can also delay cancer growth in the bones. So now in terms of follow up, are you just getting your PSA tested every couple of months?
Dr. Peck: [18:47] I just had a bone density test, which is not the same as a bone scan. Our office got a new bone density checker to see how people are in terms of their osteoporosis. And my poor tech just freaked out and said, “What is all of this? There’s stuff everywhere in your skeleton.” You know, from head to toe, from skull to femurs. The good news is my bone density is like Wolverine. I’ve got like a seven in terms of bone density. It’s like rock. I know that some of these bone mets from prostate cancers are osteolytic, horribly painful. Mine haven’t troubled me overly much other than they’re there. I try not to think about them.
Liz: [19:34] Dr. Peck’s experience with prostate cancer is extensive. He had surgery, beam radiation, hormone therapy, and a variety of surgeries and methods to try to manage his treatment side effects. So remember, the way in which each patient reacts to medication and how their cancer reacts to treatment varies greatly from person to person. There are some men on hormone therapy who have minimal side effects while others may need to revise their entire treatment plan based on experiencing too many side effects. This is why treatment needs to be personalized to the individual. While accurate staging helps determine treatment, so does the patient’s desired quality of life. Well, it seems like you kind of researched prostate cancer and stayed up to date with that. That’s very impressive.
Dr. Peck: [20:25] I had someone reach out to me who is a 59-year-old man who just discovered he had stage four prostate cancer, with a PSA of 3,000 and horrible pelvic pain. They wanted to hear what I had to say about their prognosis. And I just don’t know what to say. I’ve listened to your podcasts and I’ve heard the gospel that there’s more than one way, there are better ways to treat prostate cancer. And there is!
Liz: [20:53] Access to quality care is a big topic in the medical world. Not everyone can afford the time off work, the travel or the costs. So I asked Dr. Scholz what people who may not have these resources can do.
Dr. Scholz: [21:07] Well, like any issue, looking for quality is always the important component of getting good outcomes. Being willing to travel to another city or state is an important thing to consider. But if a person feels absolutely stuck, then probably ensuring that you’re getting consultation from both surgery and radiation therapy would be very important. We have a nonprofit educational foundation called the Prostate Cancer Research Institute that offers a free helpline as well. So consulting with them to try and get access to the best available treatment would be a good idea.
Dr. Peck: [21:46] I met a guy, one of my patients a few years ago, whose PSA was always 80 to 100 and he was real happy. He took a whole bunch of vitamins, which he had me doing, and he’s still going. One of his famous lines is, “Oh to be 70 again.” He’s been a pretty good inspirational guy, but he’s one of those fellows that was able to seek out treatments all over the country to go to Sloan Kettering, to go to MD Anderson, to go to UCLA, to everywhere and get all kinds of great advice. I’ve been sort of trailing on his advice for the last few years.
Liz: [22:24] Dr. Peck and I discussed how he approaches PSA screening with his own patients.
Dr. Peck: [22:31] I do have the conversation with them. I talk about the United States Preventative Task Force Service on getting a PSA, what it means, what are the implications, how it correlates with their age and symptoms. I’m pretty judicial. That’s a serious conversation I have with him. Then if their PSA is hanky, I have the talk with them about repeating it, how to follow up on it, who to see, and what are some smarter options rather than having what I call a “misterectomy,” which is pretty much what a radical prostatectomy is. I really think that exercise is one of the key treatments for any kind of cancer. Certainly I really not only think like an 8-year-old now, but I have the body of an 8-year-old. I go out and have some hand weights that I work on. I try to walk as much as I can. I do tai chi. I ride my mountain bike as much as I can, though I’m looking at these electric bikes pretty closely. And my diet, I don’t drink any alcohol, it just makes me feel weird. And I think that is a direct side effect from my enzalutamide or Xtandi. So I eat a pretty clean diet, but mostly Cheetos. I don’t know what happened there. That seems to be helpful and may be a cure.
Liz: [23:53] Finally, I asked Dr. Peck what advice he would give to a newly diagnosed man, based on his own experience with prostate cancer.
Dr. Peck: [24:03] Take a breath. Don’t listen to the car salesman pitch of your urologists. They mean, well, but they’re surgeons and they like doing surgery. Seek out, like Star Trek, new places to go, better places, different options. You know, trying to do watchful waiting is so hard. I don’t know if I recommend that. You know, finding non-operative approaches is the way to go. And whether that includes watchful waiting, seed implantation, external beam, radiation, and the promise of new drugs that will identify prostate cancer checkpoints, maybe some of the new monoclonal antibody therapies or the checkpoint inhibitors. Hang on guys. There’s stuff coming down the pipeline that are going to make this whole prostate surgery look like medieval torture, even the robotic surgery, which has got a lot of praise, but really has about the same cure rate as a regular open prostatectomy. Hang in there, guys, you’ll be fine. You can get through this. There’s lots of options and there’s so much more available to you there than there was for me 20 years ago.
Liz: [25:22] As Dr. Peck points out, the industry is changing very rapidly. It’s crucial that patients do their best to empower themselves with the latest information.
Dr. Peck: [25:32] Well, Liz, it’s been my pleasure and I hope that y’all who are listening will take heart and take heed and be wary and be brave.
Liz: [25:42] What do you think, Dr. Scholz? We’ve got a man in his forties who had surgery, which leaves him impotent and incontinent, but doesn’t cure his cancer. He then tries Casodex , IMRT, and Lupron to control his cancer. But all of these treatments leave him with more unwanted side effects, which then he has to go seek further treatment for. His diagnosis was in 2001, which is almost 20 years ago.
Dr. Scholz: [26:08] Yeah, you know, in the last 20 years there’ve been so many advancements in the field of prostate cancer. Imaging and radiation have greatly improved, new medications are now available. Despite this, I still see many patients come to see me in 2020 with a very similar story to Dr. Peck’s. It’s a shame to see so many frightened men falling back on our old ways now that we’re in 2020. Urologists still control the prostate cancer world and surgery is still considered the gold standard in many circles. The industry is changing and improving. Better options are available. The best thing patients can do is align themselves with an oncologist, like Dr. Peck did, who doesn’t have a preset agenda of recommending one specific therapy. Patients also must educate themselves and stay updated with the latest in prostate cancer.
Liz: [26:58] The more these intimate issues are discussed, the more people can benefit. So we really appreciate Dr. Peck helping us give a voice to the silent disease. Please help us out and keep spreading the word. Remember to rate, review, and subscribe on Apple Podcasts. You can send any comments or questions to firstname.lastname@example.org.Dr. Peck: [27:23] Yep, fellas, be your own advocate out there.