Eric was diagnosed with aggressive, locally advanced prostate cancer at age 49 after an elevated PSA led to further testing. He shares his experience with surgery, hormone therapy, radiation, and managing treatment side effects. Eric emphasizes the importance of early detection, support from loved ones, and connecting with others in the prostate cancer community.
Hi, my name is Eric Morrow. I'm 53 years old. I grew up in Santa Monica, California. After graduating from high school, I went to the Air Force Academy, and then, joined the Air Force as an officer and spent 20 years traveling around the country and around the world, safeguarding our national security.
In 2021, I was scheduled for a routine colonoscopy. And when I woke up from the colonoscopy, the GI doc said, "Your colon looks great. Your prostate's a little enlarged though. You might want to see a urologist about that." We were in the middle of COVID. I was working 14-hour days at that point in time. And to be honest, it kind of fell out of my to-do list. And fortunately, that doctor called me back about a month later and said, "I just want to check and make sure that you made your appointment with urology." It was a really simple phone call for him, but I feel pretty comfortable saying it saved my life.
When I went to urology, the doctor conducted a digital rectal examination and said that he felt something a little unusual. And so, he sent me down to the lab to do a blood draw for PSA screening. And I went home, and I got a call from the doctor about four hours later and he said, "We need you to come in for a biopsy next week. Anything over a four for PSA for your age, and we start to be concerned. Your PSA is 225." So, I went in for the biopsy. They pulled, I think, 17 or 18 cores, and I went home. And about a week later, it was late in the afternoon, early evening, and it had been about a week since the biopsy. I was wondering if my results had come in or not.
So, I went on my healthcare portal, and there, I saw the biopsy results. And I remember reading prostate adenocarcinoma, and I kind of stopped reading at that point because I knew I had cancer. And I printed out the results, walked out to the living room and handed them to my wife and she said, "What does this mean?" I said, "I think it means I have prostate cancer." So, the next morning, I received a call from my urologist, and he indicated that he'd made an appointment. This was on a Wednesday morning. He indicated that he'd made an appointment for us, for my wife and I for Monday to discuss the results of my biopsy and asked that in the meantime, I get a full body CT and a bone scan to look for metastases. And fortunately, both of those scans came back clean, so no metastases observed at that point.
And so, the following Monday, I went and sat with the urologist and talked to him a little bit about what this meant for me. And so, he explained a little bit of what prostate cancer is, how it develops, and explained that the two most common treatments for local disease are either a surgery or radiation. And he explained that based on his explanation, he said, "The five-year survival rates are about the same for either treatment, and so, it's really up to you. And if you do surgery, I'll do your surgery. I recommend you go down to one of the other hospitals that has radiation oncology, talk to them about this. And if you choose radiation, then you'll be treated by them, and you won't see me again unless radiation fails."
And as we were wrapping up that initial consult, I felt like I had more questions than answers at that point. Probably the best thing I did was I asked the doctor for a referral for a second opinion. So, I asked for a referral to Walter Reed. And again, I was lucky that there was another world-class military hospital within driving distance, and I was lucky that I remembered to ask for a second opinion because it would have been really easy to just walk out of there and not even do that.
When I asked about that, the doctor said, "Well, you know, Reed actually has a center for prostate disease research that is focused on prostate cancer, and your case is advanced enough. I'll probably just refer you there, and they'll take over your treatment." Now, the day after that meeting with the doctor, my wife and I closed on a new house. We'd been in the process of purchasing for close to two months before I was diagnosed, and I actually got my diagnosis a week before closing.
So, there were a lot of sleepless nights. I was worried if I had saddled my family with a debt that we wouldn't be able to repay, but at that point, it really was too late in the process to back out of the house purchase. So, we went to closing, and on the way home from closing, I got a call from Walter Reed and the Center for Prostate Disease Research or CPDR. And they, again, indicated that they were taking over my case, indicated that they'd scheduled me for a multidisciplinary clinic the following Monday, but asked if I could come in that Tuesday evening for a pelvic MRI, which I had not yet had. I went in about 7:30 that evening, got the pelvic MRI. In addition to worrying about cancer, we then were frantically packing up our house because we were moving on Saturday.
So, Saturday, the movers were there, and in the midst of all that, I got a call from my original urologist. And he then told me that unfortunately, the pelvic MRI showed that the cancer had invaded my pelvic lymph nodes. That was a pretty crushing blow, again, because although I didn't know a lot about prostate cancer at that point in time, I did know enough to know that lymph node invasion is a significant milestone on the way to spread.
So, I think there were, again, some sleepless nights that weekend, and then, the following Monday, we went to Walter Reed for the multidisciplinary clinic. And that multidisciplinary day really was the start of me beginning to get comfortable with my cancer diagnosis. And I can't say enough great things about Walter Reed, about the care I've received there over the last three years, and about that multidisciplinary clinic, because they brought all the clinicians to me over the course of one day of a clinic. So, it's a all-day series of meetings, basically.
But I had the opportunity to meet with a nurse educator that really explained a lot about prostate cancer, went through my biopsy results again with me one-on-one. And then, I had the opportunity to meet with a genetics counselor, a dietician, a social worker, clinical researchers, a urologic oncologist who's also a surgeon, and a radiation oncologist. And so, over the course of about four and a half hours or that morning and early afternoon, I was introduced to my care team, and I got to talk to both of the specialists that potentially would be doing my treatment.
And then, they said, "Why don't you go to lunch, and while you're at lunch, we're going to sit down, talk about your case, and when you come back, we'll have some recommendations for you." My wife and I went to lunch in the cafeteria, and when we came back to the clinic, the urologic oncologist and the radiation oncologist came in the room together. And again, that's something pretty unusual, to have two specialists in the room at the same time. And they explained that because I was young, otherwise healthy, but had very aggressive disease, they wanted to get very aggressive right back.
And so, before I get into treatment, I want to take a moment to explain just a little bit more about my diagnosis. I didn't mention it before, or I think I may have mentioned it before, my PSA was 225, and for my age at 49 at the time, really anything over a four would have been concerning. But a PSA of 225, and then, my biopsy was predominantly Gleason seven, but had a number of cores that were also Gleason nine, five plus four. So, very aggressive cancer that had spread into my pelvic lymph nodes. And so, the clinical team explained they wanted to get aggressive right back at it.
And the radiation oncologist said, "Normally, once the cancer has escaped the prostate and gotten into the lymph nodes, we don't do surgery because surgery alone is not going to be curative." But she said, "In your case, because of the amount of cancer that you have, we really feel that removing the prostate is still a good way to go, and we'll then follow that up with two years of androgen deprivation therapy and about two months of radiation therapy." And again, this is at my initial consult. So, as we're discussing treatment, I'm already getting myself used to the idea that I'm going to have surgery followed by hormone therapy followed by radiation and that both the radiation oncologist and the urologic oncologist think that this is the plan that's going to give me the most time possible before recurrence.
They indicated that because of the amount of cancer I had and because of the lymph node spread, it was extremely likely that my cancer will return at some point. But what they said is, "If we can get you three to five years before your cancer comes back, then there's all sorts of new treatments and medical advances that potentially will occur during that time, and there will be more tools to treat you when the cancer returns than there are now."
And so, my wife and I talked about it. We asked some questions of the doctor, and I left that appointment with a surgery date. My urologic oncologist called, and he explained that there's a tool called a PSMA PET scan that uses a radiotracer that binds to the cell wall of prostate cells and is more sensitive than a traditional bone scan and better at finding very small clusters of prostate cells, especially cancerous cells that might be in places in the body that they shouldn't be.
He indicated that he wanted to do one of those before surgery, primarily for targeting purposes so that he knew where the cancer was, and he had a better surgical plan when he went in to go and try and take it all out. I had my PSMA PET scan, and got the results of that actually the weekend before surgery. And it confirmed that the cancer had spread to my pelvic lymph nodes, but it also did not show any other metastases, which again, talking about the rollercoaster of emotions that every cancer patient feels, that was a relief.
As much as I wasn't happy to hear that it was in my lymph nodes, I'd already known that, and I was just tremendously relieved that it hadn't yet migrated anywhere else in my body. So, on the 19th of July 2021, I went in for my surgery. I want to say it was about a five and a half hour procedure. And when I came out of recovery, I had a chance to speak very quickly with the doctor who indicated that the surgery went about as well as he could have predicted and that he felt like they got everything that they were able to get. He did indicate that the path report would likely show positive margins. And again, because of the lymph node spread, I was already kind of prepared for that. My wife asked how I felt. I told her I felt like I'd gone 15 rounds with Mike Tyson and went up to the floor for recovery that evening.
And I was in the hospital for, oh, all told, maybe 20 hours up in post-surgical ward and was discharged the following afternoon back home. As anyone who's been through a prostatectomy knows, you go home with a Foley catheter because they have to transect the urethra. So, the Foley catheter was probably the worst part of the whole post-surgical experience, and some clots are normal. I ended up developing a couple of clots that prevented me from passing urine, and I had to go to the ER a couple of times. And I'll tell you, I have never been so happy as the day I got that catheter out. Tremendously relieved to have that out. And then, the real work of starting to go for longer and longer walks and really recover from surgery could begin in earnest once that first week was up.
At my six week post-op, my PSA had dropped from 225 to about 6.1, and the doctors were encouraged, but were a little concerned that it hadn't dropped more. So, at the 12-week point, it had gone back up to 6.9, and so, the doctors basically said, "All right, at your 14-week appointment, we're going to do another PSMA PET scan. We're going to start you on androgen deprivation therapy, and we'll get another PSA to see where you sit."
And so, again, at that 14-week appointment, I went back in. By this point, Walter Reed had gotten the specific radiotracer for the PSMA PET scan, so I was able to do that at Walter Reed. And then, went back, got my first shot of Lupron, got my abiraterone prescribed along with the prednisone that I needed to take with it. And then, they went for a PSA blood draw that came back at 9.2. So, now, I was kind of out of the surgical window and into androgen deprivation therapy.
About four months of ADT, my PSA had gone undetectable, and I'll give you the good news right up front, it's been undetectable now for the last three years. Along with that drop in testosterone, I started noticing that I got tired more easily when I was exercising, either when I'd be out walking or cycling, or I started a weight training program right after I got on ADT. Through the first two months of ADT, I really noticed a decrease in my physical strength and my endurance. Again, because the androgen deprivation therapy prevents your body from producing testosterone as well as from up-taking testosterone, ADT patients typically are at higher risk of losing lean muscle mass, losing bone density, developing some additional abdominal fat, and then, hot flashes, increased emotionality, and I experienced all of that.
Fortunately, I didn't gain too much weight, but I was a little maniacal about my exercise during that time, specifically. And actually, I hadn't been in the weight room probably since college and ended up going to a gym and starting to work out three times a week just to try and maintain the muscle mass that I had and not lose too much. For me, the hot flashes were one of the big challenges of ADT. And the other big one, again, because my body now was no longer producing testosterone, my libido, my sexual desire pretty much was non-existent, and that was challenging for a guy who's only 50, for my wife. It was a bit of a challenge and there were ways to work through that, but it wasn't easy.
About two months into androgen deprivation therapy, I then started my radiotherapy. The challenge for prostate cancer patients is because of the male anatomy and to prevent parts of your body that they don't want to radiate from receiving that radiation, you have to show up with a full bladder and an empty rectum. So, every morning, there's a certain amount of bathroom prep you have to do, and then, starting on the drive to the hospital, I had to hydrate, not too much because I didn't want to lose everything while I was still in the car, but had to hydrate so that I could show up at the hospital hydrated enough so that I could get on the table and get my treatment.
And I'd say the first week, week and a half was extremely challenging. Again, especially as a post-prostatectomy patient, it was challenging for me. One of the common side effects of surgery is urinary incontinence. Some men regain their continence very quickly. Others take more time. I'm in that group that has never fully regained continence, so trying to keep a full bladder when my body didn't want to, and being able to time it so that my bladder was full and I could be on the table without it being so full that I had to go pee was really a challenge. And like I said, I struggled with that for probably the first week and a half of treatment.
Eventually, I figured all that out. And once I figured it out, it was less challenging. It was still stressful though because when you get on the table, the first thing they do is take a quick CT basically to take a look at your bladder and your rectum and make sure that you're prepared. That stress never went away for those two months that I was being treated.
But fortunately, for the most part, again, treatment was uneventful. There was, I think right at around the one-month point, I did notice a little pain when urinating, and so, the radiation oncologist prescribed Flomax for me, and that alleviated the pain really probably up until my last week of treatment, and then, the pain started coming back again. The discomfort caused from radiotherapy usually reaches its peak at about two weeks after you're done with treatment, and she was spot on. My most intense pain was about two weeks after treatment. Again, I received a fairly high dose of radiation because I was otherwise young and in good health that they felt like my body could tolerate that dose.
And so, probably from about two to three weeks post-radiation, I couldn't walk more than about a half a mile without excruciating pain. And so, I really had to lay off the exercise for probably about three weeks before where I could start to slowly build up again, but the pain reached its peak at two weeks. And by four weeks post-treatment, I was starting to feel a little bit better and was able to get back into my exercise routine, do a little bit of traveling with some friends. And at that point, it really was just continuing the daily pills for androgen deprivation therapy, the quarterly shots for androgen deprivation therapy, and the quarterly blood draws to assess how treatment was going and how my body was reacting to the ADT.
I had a full two years of androgen deprivation therapy. That finished up in late October of 2023. And probably by April of 2024 was when we started to see my testosterone come back in a real meaningful way. And by July of 2024, it was back to pre-diagnosis levels. And my clinical team attributes that primarily to, again, my relatively young age during treatment and my physical condition before treatment and the exercise and physical fitness regime that I had during treatment. I'm lucky in that my testosterone bounced back pretty quickly, and the hot flashes went away, my sexual desire returned. And again, it's now December of 2024, and I'm still doing great. My last blood draw at the end of October indicated my PSA is still undetectable, and so, everything's going pretty well right now.
The other side effect that I have... And so, I mentioned that I still have urinary incontinence from surgery, and my clinical team thinks part of the reason for that is, again, because of the extent of my prostate cancer, because of the fact that I had some extra prostatic extension, they had to take a little bit more tissue up near the bladder neck than they might have otherwise liked, and that has partially prevented my bladder sphincter from developing full control. The other factor is because I had radiation beginning about five months after surgery, that radiation also likely weakened that bladder sphincter, and so, it's likely I will have some level of incontinence for the rest of my life.
Now, it's not limiting in terms of me being able to do a lot of things. It is kind of inconvenient, and annoying, and frustrating sometimes, but if I had to choose between urinary incontinence and dying from prostate cancer, I choose urinary incontinence. I am looking at potentially getting a artificial urinary sphincter, or AUS, implanted maybe later this year, and that would eliminate the need for any sort of incontinence pads or anything else because I'd have a mechanical device then that helps me control my bladder. So, that's on the table, and all the people I've spoken with and have heard about that have received AUSs are extremely satisfied with their decision. So, I'm leaning in that direction.
Now, in addition to urinary incontinence, the other side effect I think that a lot of men worry about from prostatectomies, from surgery specifically, is erectile dysfunction. Talking to my clinician, ED post-prostatectomy is largely a result of whether or not the surgeon's able to do what's called nerve sparing surgery. The nerve bundles that run down from the bladder to the prostate and help control erection, if those are free of cancer and the surgeon can spare those, generally anywhere from three months to a year after surgery, those nerve bundles are able to reattach and are able to continue functioning, and men can have erections again.
In my case, again, because of the extent of my cancer, the surgeon had to remove some of the nerve bundle because they were cancerous, and so, I have permanent ED. There are a number of treatments for that ED. The surgeon prescribed me a vacuum pump. And again, the goal of that is to help draw blood into the penis and promote erections. The vacuum device worked at helping with blood flow, but it didn't really do anything for erections. So, the next step after that for me was a pharmaceutical called edex. That's the brand name, unfortunately. I don't remember just what the pharmaceutical name is, but it's a liquid that you inject into the penis and helps promote erections. For me, that worked very well. And so, I use that occasionally when I choose to.
The other thing that I think certainly most people in long-term relationships have figured out, but is I think especially important for anyone living with ED to understand is it is completely possible to have healthy sexual relationships and to please your partner and for you to be pleased without an erection. It sounds counterintuitive, but it works. And I would say my sex life is different now than it used to be, but it's not necessarily worse. It's just different. And I could probably do a whole nother talk just on dealing with ED post-prostatectomy.
Again, it's not necessarily what I envisioned for myself at age 53, but I remember sitting in that first urology meeting after my diagnosis when the doctor was talking about, "Oh, five-year survival rates for prostatectomy and radiation are about the same," and I remember thinking to myself, I don't want five-year survival rates. I have a wife I love. At the time, I had a 18-year-old and a 13-year-old, and in my brain, I was thinking, I want the 20-year survival rates.
And so, for me, the treatment that I've gotten has been phenomenal. I still consider myself that I'm living with prostate cancer, even though biochemically, there's no evidence of disease. I'm prepared for the fact that it'll return at some point, but I feel tremendously blessed that right now, I'm able to live my life without the near-term threat of prostate cancer hanging over my head. And if I had to do it all over again, I wouldn't change a thing.
Prior to my diagnosis, I really didn't know a whole lot about prostate cancer. I really wasn't all that familiar with PSA testing. I knew there was something called PSA. I knew that doctors would screen for it. And so, when I was 40 in 2011, I had my PSA checked, and it was 2.7.
Now, knowing what we know now in 2024, we know that 2.7 is too high for a 40-year-old. But at the time, I don't believe they knew that, and it was below four. And so, the doctor really was unconcerned about my PSA at that point in time. In about 2016, I learned that my father had had prostate cancer a number of years earlier. My father and I weren't especially close growing up, and it really was through a relative that I learned that he had been diagnosed, and that he'd had treatment and was currently in remission.
Now, with a family history, my primary care provider indicated they'd be willing to do it at age 50, but unfortunately, I got diagnosed at age 49 with very aggressive, locally advanced disease. Now, I feel confident that had I been screened beginning at age 45, that my cancer would have been caught at a much earlier stage when it would have been easier to treat, and there would have likely been fewer side effects as a result of treatment, but that wasn't the case for me. What I did learn after being diagnosed was that African-American men are more likely to be diagnosed with prostate cancer and almost twice as likely to die from prostate cancer than other demographic groups. I learned that men with a family history, no surprise there, are more likely to be diagnosed with prostate cancer.
And I think largely because I was treated in a military hospital, I learned that veterans are more likely to be diagnosed with prostate cancer and with more aggressive forms of the disease than other demographic groups. So, I had this triple threat of being in three different high-risk groups and not knowing it, and my primary care provider, I don't know, knew that either. But because I think there's less knowledge in the primary care community around prostate cancer and because we as men don't talk a lot about prostate cancer or share our men's health experiences, the U.S. population in general, I think, has a misunderstanding of prostate cancer.
I think a lot of people like me feel that prostate cancer is something that happens to older men, maybe in their late 60s or 70s, and that it's not really something for people in their 40s and 50s to worry about, and that couldn't be further from the truth. In fact, my son, now that he's seeing his own primary care physician and he's indicated... He's given them a complete family history, they've basically said, "We're going to start checking your PSA beginning at age 35 so that we can see over time, what it does. And if we start to notice any concerning changes, we can take action in the terms of more diagnostic tests quickly to catch things before they develop to the point they did for your dad."
So, I'm thankful that he's in the boat of getting that early detection, but that's something really that I think every man in America needs to be aware of. And for those of us living with prostate cancer, it's important that we communicate and share our stories because I think unfortunately, because of the potential side effects, prostate cancer has some stigma around it, and we need to remove that stigma, and we need to be able to openly share our experiences so that those younger generations, as well as our peers, have the information they need to keep themselves safe.
For me personally, having my wife as sort of my caregiver, if you will, and support network was critical. We made the decision starting from that very first urology appointment after my diagnosis that she was coming to every appointment she could. And it really was key because especially as a new cancer patient, you're sitting there, your brain's going a million miles a minute. I think like anyone that hears the word cancer, you're worried you're going to die. And so, as the physicians are talking, there are things that you're going to miss, and having another person in the room, whether it's a spouse, whether it's a child, whether it's a close friend, having someone that you trust that can be in the room with you to take notes and to listen to what the doctor's saying, and then, to ask questions that maybe you didn't think of is key.
I think probably starting at about the four to six-month timeframe, right before radiation, I joined a couple of the Facebook groups that Prostate Cancer Foundation and Zero Prostate Cancer have established and was able to communicate a little bit with other men via Facebook. And then, really, it was after I was finished with treatment and I could start... I hate to sound selfish, but once I could stop thinking about me so much and start thinking about other people a little more was when I started to participate more actively with the wider prostate cancer community.
I was lucky in that I had a phenomenal wife as my caregiver who allowed me to be selfish and just focus on me during that time. And she held down the fort with the family. She kept the house running. I had a phenomenal employer at the time that was very supportive and allowed me as much time off as I needed to take care of me. And so, I really had an ideal situation where I could be selfish and just focus on myself and what I needed to do every day for my treatment.
And once I made it through the other side, I realized I've been blessed, and it's now time for me to start giving back and helping others. And so, I started volunteering at Walter Reed at the Center for Prostate Disease Research, and every Monday, when they have their multidisciplinary clinic, either I or another survivor attends and shares that survivor perspective on the various treatments, on living with prostate cancer, on the side effects, on the effects it's had on our relationships with other people, and just to be there to let other men know that they're not alone, and there's someone that's walked in their footsteps before them, and is there to help them along the way.
And I would highly encourage everyone diagnosed with prostate cancer to try and attend at least one, either in-person or via Zoom support group meeting just to hear from other men. For a lot of men, we want to handle everything ourselves, having those support groups to lean on really can be a blessing, and I'd encourage people to do that.
The one thing I'd like to say to anyone watching this is, number one, you're not alone. There are lots of men who have been diagnosed and have been treated for prostate cancer, and a lot of us are still here several years later. Particularly if your cancer is caught early while it's still localized in the pelvis, the overall success rates for treatment are very, very high. I know once it starts to spread, it becomes more challenging to treat, but there still are, for most men, still several different pathways out there.
The other thing I'd like to say is that, again, as a survivor, I've been blessed now to participate as a panelist and reviewer with something called the Prostate Cancer Research Program. And that's a research program. It's part of the congressionally-directed medical research program, which is funded by Congress every year. And what I can say is there are tremendous strides that are being made medically in terms of finding new treatments, in terms of making existing treatment more effective, and in terms of finding supportive treatments for those living with prostate cancer.
And so, my final message for everyone is it's important to have hope and trust that the medical community really is doing everything they can to find treatments and to ultimately try and find a cure for prostate cancer.
Hi, my name is Eric Morrow. I'm 53 years old. I grew up in Santa Monica, California. After graduating from high school, I went to the Air Force Academy, and then, joined the Air Force as an officer and spent 20 years traveling around the country and around the world, safeguarding our national security.
In 2021, I was scheduled for a routine colonoscopy. And when I woke up from the colonoscopy, the GI doc said, "Your colon looks great. Your prostate's a little enlarged though. You might want to see a urologist about that." We were in the middle of COVID. I was working 14-hour days at that point in time. And to be honest, it kind of fell out of my to-do list. And fortunately, that doctor called me back about a month later and said, "I just want to check and make sure that you made your appointment with urology." It was a really simple phone call for him, but I feel pretty comfortable saying it saved my life.
When I went to urology, the doctor conducted a digital rectal examination and said that he felt something a little unusual. And so, he sent me down to the lab to do a blood draw for PSA screening. And I went home, and I got a call from the doctor about four hours later and he said, "We need you to come in for a biopsy next week. Anything over a four for PSA for your age, and we start to be concerned. Your PSA is 225." So, I went in for the biopsy. They pulled, I think, 17 or 18 cores, and I went home. And about a week later, it was late in the afternoon, early evening, and it had been about a week since the biopsy. I was wondering if my results had come in or not.
So, I went on my healthcare portal, and there, I saw the biopsy results. And I remember reading prostate adenocarcinoma, and I kind of stopped reading at that point because I knew I had cancer. And I printed out the results, walked out to the living room and handed them to my wife and she said, "What does this mean?" I said, "I think it means I have prostate cancer." So, the next morning, I received a call from my urologist, and he indicated that he'd made an appointment. This was on a Wednesday morning. He indicated that he'd made an appointment for us, for my wife and I for Monday to discuss the results of my biopsy and asked that in the meantime, I get a full body CT and a bone scan to look for metastases. And fortunately, both of those scans came back clean, so no metastases observed at that point.
And so, the following Monday, I went and sat with the urologist and talked to him a little bit about what this meant for me. And so, he explained a little bit of what prostate cancer is, how it develops, and explained that the two most common treatments for local disease are either a surgery or radiation. And he explained that based on his explanation, he said, "The five-year survival rates are about the same for either treatment, and so, it's really up to you. And if you do surgery, I'll do your surgery. I recommend you go down to one of the other hospitals that has radiation oncology, talk to them about this. And if you choose radiation, then you'll be treated by them, and you won't see me again unless radiation fails."
And as we were wrapping up that initial consult, I felt like I had more questions than answers at that point. Probably the best thing I did was I asked the doctor for a referral for a second opinion. So, I asked for a referral to Walter Reed. And again, I was lucky that there was another world-class military hospital within driving distance, and I was lucky that I remembered to ask for a second opinion because it would have been really easy to just walk out of there and not even do that.
When I asked about that, the doctor said, "Well, you know, Reed actually has a center for prostate disease research that is focused on prostate cancer, and your case is advanced enough. I'll probably just refer you there, and they'll take over your treatment." Now, the day after that meeting with the doctor, my wife and I closed on a new house. We'd been in the process of purchasing for close to two months before I was diagnosed, and I actually got my diagnosis a week before closing.
So, there were a lot of sleepless nights. I was worried if I had saddled my family with a debt that we wouldn't be able to repay, but at that point, it really was too late in the process to back out of the house purchase. So, we went to closing, and on the way home from closing, I got a call from Walter Reed and the Center for Prostate Disease Research or CPDR. And they, again, indicated that they were taking over my case, indicated that they'd scheduled me for a multidisciplinary clinic the following Monday, but asked if I could come in that Tuesday evening for a pelvic MRI, which I had not yet had. I went in about 7:30 that evening, got the pelvic MRI. In addition to worrying about cancer, we then were frantically packing up our house because we were moving on Saturday.
So, Saturday, the movers were there, and in the midst of all that, I got a call from my original urologist. And he then told me that unfortunately, the pelvic MRI showed that the cancer had invaded my pelvic lymph nodes. That was a pretty crushing blow, again, because although I didn't know a lot about prostate cancer at that point in time, I did know enough to know that lymph node invasion is a significant milestone on the way to spread.
So, I think there were, again, some sleepless nights that weekend, and then, the following Monday, we went to Walter Reed for the multidisciplinary clinic. And that multidisciplinary day really was the start of me beginning to get comfortable with my cancer diagnosis. And I can't say enough great things about Walter Reed, about the care I've received there over the last three years, and about that multidisciplinary clinic, because they brought all the clinicians to me over the course of one day of a clinic. So, it's a all-day series of meetings, basically.
But I had the opportunity to meet with a nurse educator that really explained a lot about prostate cancer, went through my biopsy results again with me one-on-one. And then, I had the opportunity to meet with a genetics counselor, a dietician, a social worker, clinical researchers, a urologic oncologist who's also a surgeon, and a radiation oncologist. And so, over the course of about four and a half hours or that morning and early afternoon, I was introduced to my care team, and I got to talk to both of the specialists that potentially would be doing my treatment.
And then, they said, "Why don't you go to lunch, and while you're at lunch, we're going to sit down, talk about your case, and when you come back, we'll have some recommendations for you." My wife and I went to lunch in the cafeteria, and when we came back to the clinic, the urologic oncologist and the radiation oncologist came in the room together. And again, that's something pretty unusual, to have two specialists in the room at the same time. And they explained that because I was young, otherwise healthy, but had very aggressive disease, they wanted to get very aggressive right back.
And so, before I get into treatment, I want to take a moment to explain just a little bit more about my diagnosis. I didn't mention it before, or I think I may have mentioned it before, my PSA was 225, and for my age at 49 at the time, really anything over a four would have been concerning. But a PSA of 225, and then, my biopsy was predominantly Gleason seven, but had a number of cores that were also Gleason nine, five plus four. So, very aggressive cancer that had spread into my pelvic lymph nodes. And so, the clinical team explained they wanted to get aggressive right back at it.
And the radiation oncologist said, "Normally, once the cancer has escaped the prostate and gotten into the lymph nodes, we don't do surgery because surgery alone is not going to be curative." But she said, "In your case, because of the amount of cancer that you have, we really feel that removing the prostate is still a good way to go, and we'll then follow that up with two years of androgen deprivation therapy and about two months of radiation therapy." And again, this is at my initial consult. So, as we're discussing treatment, I'm already getting myself used to the idea that I'm going to have surgery followed by hormone therapy followed by radiation and that both the radiation oncologist and the urologic oncologist think that this is the plan that's going to give me the most time possible before recurrence.
They indicated that because of the amount of cancer I had and because of the lymph node spread, it was extremely likely that my cancer will return at some point. But what they said is, "If we can get you three to five years before your cancer comes back, then there's all sorts of new treatments and medical advances that potentially will occur during that time, and there will be more tools to treat you when the cancer returns than there are now."
And so, my wife and I talked about it. We asked some questions of the doctor, and I left that appointment with a surgery date. My urologic oncologist called, and he explained that there's a tool called a PSMA PET scan that uses a radiotracer that binds to the cell wall of prostate cells and is more sensitive than a traditional bone scan and better at finding very small clusters of prostate cells, especially cancerous cells that might be in places in the body that they shouldn't be.
He indicated that he wanted to do one of those before surgery, primarily for targeting purposes so that he knew where the cancer was, and he had a better surgical plan when he went in to go and try and take it all out. I had my PSMA PET scan, and got the results of that actually the weekend before surgery. And it confirmed that the cancer had spread to my pelvic lymph nodes, but it also did not show any other metastases, which again, talking about the rollercoaster of emotions that every cancer patient feels, that was a relief.
As much as I wasn't happy to hear that it was in my lymph nodes, I'd already known that, and I was just tremendously relieved that it hadn't yet migrated anywhere else in my body. So, on the 19th of July 2021, I went in for my surgery. I want to say it was about a five and a half hour procedure. And when I came out of recovery, I had a chance to speak very quickly with the doctor who indicated that the surgery went about as well as he could have predicted and that he felt like they got everything that they were able to get. He did indicate that the path report would likely show positive margins. And again, because of the lymph node spread, I was already kind of prepared for that. My wife asked how I felt. I told her I felt like I'd gone 15 rounds with Mike Tyson and went up to the floor for recovery that evening.
And I was in the hospital for, oh, all told, maybe 20 hours up in post-surgical ward and was discharged the following afternoon back home. As anyone who's been through a prostatectomy knows, you go home with a Foley catheter because they have to transect the urethra. So, the Foley catheter was probably the worst part of the whole post-surgical experience, and some clots are normal. I ended up developing a couple of clots that prevented me from passing urine, and I had to go to the ER a couple of times. And I'll tell you, I have never been so happy as the day I got that catheter out. Tremendously relieved to have that out. And then, the real work of starting to go for longer and longer walks and really recover from surgery could begin in earnest once that first week was up.
At my six week post-op, my PSA had dropped from 225 to about 6.1, and the doctors were encouraged, but were a little concerned that it hadn't dropped more. So, at the 12-week point, it had gone back up to 6.9, and so, the doctors basically said, "All right, at your 14-week appointment, we're going to do another PSMA PET scan. We're going to start you on androgen deprivation therapy, and we'll get another PSA to see where you sit."
And so, again, at that 14-week appointment, I went back in. By this point, Walter Reed had gotten the specific radiotracer for the PSMA PET scan, so I was able to do that at Walter Reed. And then, went back, got my first shot of Lupron, got my abiraterone prescribed along with the prednisone that I needed to take with it. And then, they went for a PSA blood draw that came back at 9.2. So, now, I was kind of out of the surgical window and into androgen deprivation therapy.
About four months of ADT, my PSA had gone undetectable, and I'll give you the good news right up front, it's been undetectable now for the last three years. Along with that drop in testosterone, I started noticing that I got tired more easily when I was exercising, either when I'd be out walking or cycling, or I started a weight training program right after I got on ADT. Through the first two months of ADT, I really noticed a decrease in my physical strength and my endurance. Again, because the androgen deprivation therapy prevents your body from producing testosterone as well as from up-taking testosterone, ADT patients typically are at higher risk of losing lean muscle mass, losing bone density, developing some additional abdominal fat, and then, hot flashes, increased emotionality, and I experienced all of that.
Fortunately, I didn't gain too much weight, but I was a little maniacal about my exercise during that time, specifically. And actually, I hadn't been in the weight room probably since college and ended up going to a gym and starting to work out three times a week just to try and maintain the muscle mass that I had and not lose too much. For me, the hot flashes were one of the big challenges of ADT. And the other big one, again, because my body now was no longer producing testosterone, my libido, my sexual desire pretty much was non-existent, and that was challenging for a guy who's only 50, for my wife. It was a bit of a challenge and there were ways to work through that, but it wasn't easy.
About two months into androgen deprivation therapy, I then started my radiotherapy. The challenge for prostate cancer patients is because of the male anatomy and to prevent parts of your body that they don't want to radiate from receiving that radiation, you have to show up with a full bladder and an empty rectum. So, every morning, there's a certain amount of bathroom prep you have to do, and then, starting on the drive to the hospital, I had to hydrate, not too much because I didn't want to lose everything while I was still in the car, but had to hydrate so that I could show up at the hospital hydrated enough so that I could get on the table and get my treatment.
And I'd say the first week, week and a half was extremely challenging. Again, especially as a post-prostatectomy patient, it was challenging for me. One of the common side effects of surgery is urinary incontinence. Some men regain their continence very quickly. Others take more time. I'm in that group that has never fully regained continence, so trying to keep a full bladder when my body didn't want to, and being able to time it so that my bladder was full and I could be on the table without it being so full that I had to go pee was really a challenge. And like I said, I struggled with that for probably the first week and a half of treatment.
Eventually, I figured all that out. And once I figured it out, it was less challenging. It was still stressful though because when you get on the table, the first thing they do is take a quick CT basically to take a look at your bladder and your rectum and make sure that you're prepared. That stress never went away for those two months that I was being treated.
But fortunately, for the most part, again, treatment was uneventful. There was, I think right at around the one-month point, I did notice a little pain when urinating, and so, the radiation oncologist prescribed Flomax for me, and that alleviated the pain really probably up until my last week of treatment, and then, the pain started coming back again. The discomfort caused from radiotherapy usually reaches its peak at about two weeks after you're done with treatment, and she was spot on. My most intense pain was about two weeks after treatment. Again, I received a fairly high dose of radiation because I was otherwise young and in good health that they felt like my body could tolerate that dose.
And so, probably from about two to three weeks post-radiation, I couldn't walk more than about a half a mile without excruciating pain. And so, I really had to lay off the exercise for probably about three weeks before where I could start to slowly build up again, but the pain reached its peak at two weeks. And by four weeks post-treatment, I was starting to feel a little bit better and was able to get back into my exercise routine, do a little bit of traveling with some friends. And at that point, it really was just continuing the daily pills for androgen deprivation therapy, the quarterly shots for androgen deprivation therapy, and the quarterly blood draws to assess how treatment was going and how my body was reacting to the ADT.
I had a full two years of androgen deprivation therapy. That finished up in late October of 2023. And probably by April of 2024 was when we started to see my testosterone come back in a real meaningful way. And by July of 2024, it was back to pre-diagnosis levels. And my clinical team attributes that primarily to, again, my relatively young age during treatment and my physical condition before treatment and the exercise and physical fitness regime that I had during treatment. I'm lucky in that my testosterone bounced back pretty quickly, and the hot flashes went away, my sexual desire returned. And again, it's now December of 2024, and I'm still doing great. My last blood draw at the end of October indicated my PSA is still undetectable, and so, everything's going pretty well right now.
The other side effect that I have... And so, I mentioned that I still have urinary incontinence from surgery, and my clinical team thinks part of the reason for that is, again, because of the extent of my prostate cancer, because of the fact that I had some extra prostatic extension, they had to take a little bit more tissue up near the bladder neck than they might have otherwise liked, and that has partially prevented my bladder sphincter from developing full control. The other factor is because I had radiation beginning about five months after surgery, that radiation also likely weakened that bladder sphincter, and so, it's likely I will have some level of incontinence for the rest of my life.
Now, it's not limiting in terms of me being able to do a lot of things. It is kind of inconvenient, and annoying, and frustrating sometimes, but if I had to choose between urinary incontinence and dying from prostate cancer, I choose urinary incontinence. I am looking at potentially getting a artificial urinary sphincter, or AUS, implanted maybe later this year, and that would eliminate the need for any sort of incontinence pads or anything else because I'd have a mechanical device then that helps me control my bladder. So, that's on the table, and all the people I've spoken with and have heard about that have received AUSs are extremely satisfied with their decision. So, I'm leaning in that direction.
Now, in addition to urinary incontinence, the other side effect I think that a lot of men worry about from prostatectomies, from surgery specifically, is erectile dysfunction. Talking to my clinician, ED post-prostatectomy is largely a result of whether or not the surgeon's able to do what's called nerve sparing surgery. The nerve bundles that run down from the bladder to the prostate and help control erection, if those are free of cancer and the surgeon can spare those, generally anywhere from three months to a year after surgery, those nerve bundles are able to reattach and are able to continue functioning, and men can have erections again.
In my case, again, because of the extent of my cancer, the surgeon had to remove some of the nerve bundle because they were cancerous, and so, I have permanent ED. There are a number of treatments for that ED. The surgeon prescribed me a vacuum pump. And again, the goal of that is to help draw blood into the penis and promote erections. The vacuum device worked at helping with blood flow, but it didn't really do anything for erections. So, the next step after that for me was a pharmaceutical called edex. That's the brand name, unfortunately. I don't remember just what the pharmaceutical name is, but it's a liquid that you inject into the penis and helps promote erections. For me, that worked very well. And so, I use that occasionally when I choose to.
The other thing that I think certainly most people in long-term relationships have figured out, but is I think especially important for anyone living with ED to understand is it is completely possible to have healthy sexual relationships and to please your partner and for you to be pleased without an erection. It sounds counterintuitive, but it works. And I would say my sex life is different now than it used to be, but it's not necessarily worse. It's just different. And I could probably do a whole nother talk just on dealing with ED post-prostatectomy.
Again, it's not necessarily what I envisioned for myself at age 53, but I remember sitting in that first urology meeting after my diagnosis when the doctor was talking about, "Oh, five-year survival rates for prostatectomy and radiation are about the same," and I remember thinking to myself, I don't want five-year survival rates. I have a wife I love. At the time, I had a 18-year-old and a 13-year-old, and in my brain, I was thinking, I want the 20-year survival rates.
And so, for me, the treatment that I've gotten has been phenomenal. I still consider myself that I'm living with prostate cancer, even though biochemically, there's no evidence of disease. I'm prepared for the fact that it'll return at some point, but I feel tremendously blessed that right now, I'm able to live my life without the near-term threat of prostate cancer hanging over my head. And if I had to do it all over again, I wouldn't change a thing.
Prior to my diagnosis, I really didn't know a whole lot about prostate cancer. I really wasn't all that familiar with PSA testing. I knew there was something called PSA. I knew that doctors would screen for it. And so, when I was 40 in 2011, I had my PSA checked, and it was 2.7.
Now, knowing what we know now in 2024, we know that 2.7 is too high for a 40-year-old. But at the time, I don't believe they knew that, and it was below four. And so, the doctor really was unconcerned about my PSA at that point in time. In about 2016, I learned that my father had had prostate cancer a number of years earlier. My father and I weren't especially close growing up, and it really was through a relative that I learned that he had been diagnosed, and that he'd had treatment and was currently in remission.
Now, with a family history, my primary care provider indicated they'd be willing to do it at age 50, but unfortunately, I got diagnosed at age 49 with very aggressive, locally advanced disease. Now, I feel confident that had I been screened beginning at age 45, that my cancer would have been caught at a much earlier stage when it would have been easier to treat, and there would have likely been fewer side effects as a result of treatment, but that wasn't the case for me. What I did learn after being diagnosed was that African-American men are more likely to be diagnosed with prostate cancer and almost twice as likely to die from prostate cancer than other demographic groups. I learned that men with a family history, no surprise there, are more likely to be diagnosed with prostate cancer.
And I think largely because I was treated in a military hospital, I learned that veterans are more likely to be diagnosed with prostate cancer and with more aggressive forms of the disease than other demographic groups. So, I had this triple threat of being in three different high-risk groups and not knowing it, and my primary care provider, I don't know, knew that either. But because I think there's less knowledge in the primary care community around prostate cancer and because we as men don't talk a lot about prostate cancer or share our men's health experiences, the U.S. population in general, I think, has a misunderstanding of prostate cancer.
I think a lot of people like me feel that prostate cancer is something that happens to older men, maybe in their late 60s or 70s, and that it's not really something for people in their 40s and 50s to worry about, and that couldn't be further from the truth. In fact, my son, now that he's seeing his own primary care physician and he's indicated... He's given them a complete family history, they've basically said, "We're going to start checking your PSA beginning at age 35 so that we can see over time, what it does. And if we start to notice any concerning changes, we can take action in the terms of more diagnostic tests quickly to catch things before they develop to the point they did for your dad."
So, I'm thankful that he's in the boat of getting that early detection, but that's something really that I think every man in America needs to be aware of. And for those of us living with prostate cancer, it's important that we communicate and share our stories because I think unfortunately, because of the potential side effects, prostate cancer has some stigma around it, and we need to remove that stigma, and we need to be able to openly share our experiences so that those younger generations, as well as our peers, have the information they need to keep themselves safe.
For me personally, having my wife as sort of my caregiver, if you will, and support network was critical. We made the decision starting from that very first urology appointment after my diagnosis that she was coming to every appointment she could. And it really was key because especially as a new cancer patient, you're sitting there, your brain's going a million miles a minute. I think like anyone that hears the word cancer, you're worried you're going to die. And so, as the physicians are talking, there are things that you're going to miss, and having another person in the room, whether it's a spouse, whether it's a child, whether it's a close friend, having someone that you trust that can be in the room with you to take notes and to listen to what the doctor's saying, and then, to ask questions that maybe you didn't think of is key.
I think probably starting at about the four to six-month timeframe, right before radiation, I joined a couple of the Facebook groups that Prostate Cancer Foundation and Zero Prostate Cancer have established and was able to communicate a little bit with other men via Facebook. And then, really, it was after I was finished with treatment and I could start... I hate to sound selfish, but once I could stop thinking about me so much and start thinking about other people a little more was when I started to participate more actively with the wider prostate cancer community.
I was lucky in that I had a phenomenal wife as my caregiver who allowed me to be selfish and just focus on me during that time. And she held down the fort with the family. She kept the house running. I had a phenomenal employer at the time that was very supportive and allowed me as much time off as I needed to take care of me. And so, I really had an ideal situation where I could be selfish and just focus on myself and what I needed to do every day for my treatment.
And once I made it through the other side, I realized I've been blessed, and it's now time for me to start giving back and helping others. And so, I started volunteering at Walter Reed at the Center for Prostate Disease Research, and every Monday, when they have their multidisciplinary clinic, either I or another survivor attends and shares that survivor perspective on the various treatments, on living with prostate cancer, on the side effects, on the effects it's had on our relationships with other people, and just to be there to let other men know that they're not alone, and there's someone that's walked in their footsteps before them, and is there to help them along the way.
And I would highly encourage everyone diagnosed with prostate cancer to try and attend at least one, either in-person or via Zoom support group meeting just to hear from other men. For a lot of men, we want to handle everything ourselves, having those support groups to lean on really can be a blessing, and I'd encourage people to do that.
The one thing I'd like to say to anyone watching this is, number one, you're not alone. There are lots of men who have been diagnosed and have been treated for prostate cancer, and a lot of us are still here several years later. Particularly if your cancer is caught early while it's still localized in the pelvis, the overall success rates for treatment are very, very high. I know once it starts to spread, it becomes more challenging to treat, but there still are, for most men, still several different pathways out there.
The other thing I'd like to say is that, again, as a survivor, I've been blessed now to participate as a panelist and reviewer with something called the Prostate Cancer Research Program. And that's a research program. It's part of the congressionally-directed medical research program, which is funded by Congress every year. And what I can say is there are tremendous strides that are being made medically in terms of finding new treatments, in terms of making existing treatment more effective, and in terms of finding supportive treatments for those living with prostate cancer.
And so, my final message for everyone is it's important to have hope and trust that the medical community really is doing everything they can to find treatments and to ultimately try and find a cure for prostate cancer.