My name is Scott Evenson. I am currently 53 years old. I was diagnosed with prostate cancer stage four, unfortunately, in September of 2019. The way that came about was very surprising and scary. I had a sore shoulder and I had been the best shape of my life, what I thought, at 50 years old. 175 pounds, mountain biking four days a week, and some very hilly trails, eight to 14 miles four days a week and just felt great. All of a sudden I started feeling a sore shoulder, and I'm kind of like, "Oh, okay, that's an old workout injury from four years ago from when I was benching, must have tore something." So, I kind of dealt with it until the pain became excruciating.
I went to see an orthopedic surgeon, had an MRI, and within a half hour of that MRI, I received a phone call on my ride home. This was a doctor who was friends with my current employer, so I thought, "Hey, I'm getting the front of the line here. He's going to give me the update on my MRI if I got a torn rotator cuff." The doctor said, "Scott, I'm very concerned you have a bone lesion in your shoulder." I'm like, "What?" And I dismissed it.
I'm like, "Oh yeah, but what about my torn rotator cuff?" He goes, "I'm not so worried about that." I'm like, "Well, what's a bone lesion?" He said, "Potential cancer." I'm like, "What?" He said, "Yeah," and he says, "I have an appointment made for you. I need you to call the clinic, they're going to close in the next 15 minutes." My brain was spinning.
I called, confirmed the appointment, was there the next morning and met with some doctors, and had a blood test and found out that my PSA was 662. So many men will get a Gleason score, I unfortunately went beyond that ahead of the line just because of my PSA being 662. Once scans were performed, it was determined I was stage four metastatic prostate cancer. From there, my life just turned upside down.
For the next six to eight weeks, sleeping and eating were extremely difficult. I was taking melatonin to try to sleep at night, but when you go to bed at night, I'd wake up at 3:00 in the morning after you've had that nap, if you will, and then I was done, I couldn't sleep again. Finally, I was able to sleep and kind of grasp what was going on.
Initially, it was just the doctor set up from my orthopedic surgeon. From there, he had said that I could basically pick from the available oncologists at my hospital. From there, to be honest, I chose a doctor who was head of the clinical trials. So, I went to Facebook and I looked up prostate cancer and I found a couple groups, and that was actually pretty beneficial.
I met a person out east, California, a lot of people even here in the state I live, and spoke with them and just felt a little eased knowing. Especially this gentleman out east, he had already been two years in and I'm calling him basically two days after my diagnosis, and we kind of exchanged phone numbers. He was amazing, just amazing at easing me, and I just kept thinking of him in the back of my mind the whole time that I was kind of going through these things.
So of course, my mother, my brother, just a lot of friends around me supporting me and taking care of me. Yeah, it was just wonderful. But it was always good to just be able to reach out and ask questions in different areas, just so you had something else besides your own doctor.
Another website that was great was healthunlocked.com, and they have a metastatic or advanced prostate cancer group there, so bouncing questions there. Of course that's not a medical degree by any means, but when you can hear other patients going through these things and their experiences, you can kind of put it together and then at least help make your decision on what you want to do.
Everybody's body's different and we don't know what's going to work, or at least I didn't realize that everything doesn't work the same. When you have a problem with your car, you take it in, the mechanic says, "Hey, it's this," and you fix this. With prostate cancer, unfortunately my doctor laid out about eight items and basically said, "Choose." The hardest thing I had to do in my life is to throw a dart on a dart board and hope I'm choosing the right one that's going to work for my body, because again, everyone's different.
In defense of doctors, if they knew exactly what to put you on, they would know what the best treatments are to give us the most life potentially, but they don't, they don't. They just know what they see percentage-wise of what can work potentially better than other drugs, and that doesn't mean that's going to work for you.
Through that whole process, I learned of what they called the standard of care when someone's stage four at newly diagnosis. I for myself decided that's what I wanted to do. That was also what my doctor was originally leaning toward, but he didn't want to leave anything else out on the table that I could choose, so I did that.
That treatment at that time was starting out with bicalutamide, which is also known as Casodex, and that immediately started to bring down my PSA. Now they put you on that first to prevent a flare from the next step, and that would be either Lupron or Eligard, and our hospital went with Eligard. So from there, I had to wait, I think it was a six weeks, and then I had started chemotherapy and that was six doses of Docetaxel, Taxotere. Thankfully that started to bring it down further.
During that process, that was tough too, because I wanted to be prepared for the chemotherapy. I'd talked to people in my group. Matter of fact, oh, a gentleman I was great friends with gave me a list of items that say, hey, this is your medical list from your drug store that you should have. So, literally I had the numbing things for your gums and nausea medication, et cetera, to be prepared. Knock on wood, I didn't use any of it. Chemo was, I hate to say it, because I'm sure it's terrible for a lot of people, but for me it was a breeze. I was fortunate.
We've always been told chemo is just so bad, and a buddy of mine would joke and say, "It's this green stuff that they put into you." But no, I mean, yeah, the thought process out there is it's just terrible. But no, I would say with what you had said of the numbers, don't be scared of it, embrace it. I might had a little bit of mouth sores, but I used Biotene rinse, but literally I think that was it if I had to think back. It wasn't bad at all, it wasn't bad at all.
Did it affect me? Absolutely. I was slow, I was tired for at least a few days afterward, but I never had nausea. During the chemotherapy treatments, I had heard that there's going to be a chance for neuropathy, fingertips, toes, things like that, so I brought my own little cooler and brought ice bags and literally set my feet on ice bags and held on to ice bags. Then my support network, either my brother or some friends came and would kind of feed me some ice chips during the chemotherapy treatment.
There's nothing that says that that necessarily works. I mean, even the nurses are like, "Well, we can help you assist, but we can't really give you the ice bags." But thankfully, no neuropathy. Whether it worked or not, jury's out. So, that was there. Then I think once I got into the chemotherapy, I realized where I'm at and the shock, that initial shock. Once you get through that shock, life will get better, and you have to.
People come to me and say, "Scott, you have a positive attitude." I'm like, "You know what? You don't have a choice, you have to just do it, otherwise you're going to curl in a ball and do nothing." But no, I'm thankful for everyday I open my eyes and so I just make the best of it. Hang with friends, family, things of that nature, yeah.
I think my mom and my brother have kind of kept it inside. She did show some emotion, but I think that she's ... and my brother both being strong, I think behind the scenes they do have their talks to try to lean on each other, but I think in front of me they don't show it. To be honest, they try to act normal and just treat me the same way they did before.
That's another thing too. Friends that treat you the same as you did before diagnosis is great. Some friends will be like, "Oh, how you doing?" That kind of gets a little old and you just want them to treat you like any other day. That's the only advice I could give for those who are supporting a prostate cancer patient, show support when you need to, but then treat them like anybody else, don't even focus on it. We're focusing on the day and what we're doing now.
Now, the only thing I'd say too is of course I gained a lot of weight during this. Pandemic didn't help, just because food was harder to get, family was going to the grocery store for me, I wasn't making great choices. The other thing, my doctor, not my doctor I have now, but the initial doctor said, "Oh, you can't get hurt, you can't fall, you can't do this, you can't do that."
That would be my only regret is I've kept up my mountain biking and my exercise, because I had let that go. Talking to my doctor now, he's just like, "Scott, just do it. Do it." I've only had one accident on my mountain bike at one point, so I'm not too worried about it. But yeah, I think this next summer I'm going to get back on the bike.
I never did hit that, I think the lowest I had hit was 0.06. Now, it's interesting. I had hit that and then my numbers started to raise. Now what some doctors will do, because I was still taking Casodex at this time, because there's a percentage of men that your PSA will rise if you stay on Casodex too long, and that was the case with me.
A year ago, this would be summer of 2021, my PSA started to rise and it was going up to 1.5-ish. My doctor removed the Casodex and it went down again. I got down to, again, 0.05 or six. So fortunate, very fortunate that I got that second, not a treatment, but at least a benefit by removing that.
I do know there's a new drug and a trial available to me where it's going to give you XTANDI or Nubeqa. If you have a reaction to one, you're allowed to go on the other. I don't know, those are the two that I'm kind of fighting with right now trying to decide which ones.
The one thing I've been doing as well is preaching from the rooftops about PSA. I can't tell you how many men that I've spoken with since my diagnosis that don't even know what PSA means, and so I kind of bug them to say, "Hey, have you had your PSA checked?" They'll be like, "What's that?" I tell them that they typically start testing at age 50, and it's just a blood test and you should at least go do that. So, I try to do that in my daily life if I see a gentleman, or I'll even remind younger gentlemen, "Hey, before you reach the age of testing, you should keep this in mind, you're going to need to get tested."
Just because in my case, my doctor had felt that it was already metastatic for 18 months at the time I was age 50, so I wish I would've. There's no history in my family though, so there was no reason for me to get tested early. But yeah, I don't know how we do it or how, but we need to preach a little more about PSA testing and getting men to get their physicals. I wish I would've, but that's okay. I will continue to talk about it with men and friends.
There's hope, there's lots of treatments. There's been, I think, at least three treatments available since my diagnosis, so I'm encouraged that there's new things every day.