Bob shares how an elevated PSA led to a prostate cancer diagnosis, surgery, and ultimately the discovery of metastatic disease after a PSMA PET scan. He discusses the importance of asking questions, staying active, leaning on family and friends, and maintaining hope throughout his prostate cancer journey.
My name is Bob Tuschoff and I live in West Seattle, which is part of the major metropolitan area of Seattle. I'm a father of four and I've been divorced for the last 25 years when I came out. And the prostate journey, I guess, for me began in 2021 in the fall. I had been going to a doctor for several years, the same doctor, but that doctor was going to go on a sabbatical. And so instead of seeing him on my normal physical, it was a lady doctor who noticed that I had not had my PSA checked in the last five years. So the last time it was checked was in 2017. So since the doctor was not available that was my previous doctor, we really didn't know why he stopped taking that test, but she found that it did have an uptick in my PSA.
So they did what they call active surveillance for several months. It wasn't until the next summer, in '22, that she felt that it was necessary for me to meet with a urologist. So I met with the urologist. She also felt that we should be on active surveillance for a few more months. But then she did decide, because my PSA continued to rise, that I would need to have a biopsy. And so they took the biopsy and found that I had several locations, nodes that had PSA cancer. I mean, prostate cancer. And so from that point on, we did some more active surveillance and I had to make a decision later that fall whether or not I wanted to do radiation or have it removed, and I chose to have it removed.
Well, I'm not a gambler. And so I just felt that I didn't want it in me, if that makes sense. And I always would caution on the more conservative side, I guess. I just wanted to get it out of my body and take care of it once and for all. And my surgeon did go over the pluses and the minuses. He had me also speak with a radiologist, but at the end of the day, I chose to have it removed. It was quite a shock because we haven't had prostate cancer in my family, so it was a new disease that I felt that we'd have to deal with that we hadn't in the past. So it was new for all of us. I didn't have a partner at the time. And so it was just a conversation with their mom and my kids. And I think we just came to the conclusion that the best thing to do was to have the prostate removed.
So the surgeon was very informative as far as expectations because when they do go to remove the prostate, there's a lot of nerves down there, and he was very upfront with me on some of the issues that could happen like ED and issues with bladder control and things like that. And so I went into it, I think knowingly, knowing what the side effects would be, and I still felt that it was the right thing to do. So we had the surgery. One thing I think I would like to go back just a little bit and mention too, that my surgeon, before we had the surgery, had requested a PET scan. I had a CT scan and a bone scan, but he felt that we should have... because nothing really showed up there, but yet my PSA was going up. And so he had requested a PET scan. Unfortunately, that PET scan was denied by my insurance. And we all know what's in the news with that today. Well, I guess I'm a recipient of that because they had declined it.
And so he went ahead though with the surgery. And after the surgery, he gave me a call and he felt like he had gotten it all. And he was very positive about the outcome. Unfortunately, my first PSA test after the surgery showed that it was still continuing to rise, which surprised him because he also took the lymph nodes around the prostate when he did the surgery. And so it was a surprise to him and as well as to myself because I really thought I was in the clear. But he did get back on the phone with the insurance company and was able at that time to convince them that a PET scan was necessary. And so with the PET scan, they did determine, unfortunately, that the cancer had migrated to my distant lymph nodes. So by that time I was at Stage 4.
But as far as the PET scan, obviously I was a little upset because I had known that the doctor tried before to have it done. Who knows if that would've prevented the cancer. It may have already migrated at that point, so it's hard to say. I don't blame anyone. It's just how it goes. I have some very good friends that live not far from where I live, and I happened to be at their place for dinner when I got the news from the surgeon that he thought that he got it all. I was at their house when I first found out I had it, when I got the call initially, and I was also there when I got the call saying he did not get it all. And so having friends and family nearby during those times, the initial shock, I'm glad that I had them there because there's so many things that go through your mind.
My middle brother had passed from brain cancer several years ago, so I know what cancer can do to a person. And so I just felt like I had hope though. And I still do because we are so lucky where we live in the Seattle area. We have so many good physicians and hospitals here. So I felt like I was in good hands.
I try to keep the same routines and schedules that I had even before my diagnosis. And I think that's important to, for instance, I go to the gym and I continue to do that. You don't see the results. And my oncologist told me that. She said, "Well, you can go to the gym, which is what you should do for bone strength, but it may not give you the same kind of results that you might have seen in the past." And I also do long walks about every day and I pick up litter along my walks. And so that kind of gives me a little bit of purpose, I guess, to be involved still in the community.
And then also being outside is very refreshing, especially if you're on these medications, just to pull yourself off the bed or the couch and get out because it's very easy just to say, "I just don't feel like it." And you need to push yourself. I think that the thing I'd pass along is that there's going to be ups and downs and you should find whatever brings you happiness, joy, strength. I have gone back to my faith and that has really carried me through. But I know for other people, it can be a number of different things. But I would prepare people for the ups and downs that you'll go through and be very inquisitive, ask lots of questions because it's an important decision in your life and probably one of the most important decisions. So don't be afraid to ask questions of your doctors.
For myself, I feel like I am going to be making some changes. I'm going to move a little closer to my family. And I just try to keep a very positive outlook. I don't want to go down the rabbit hole, and I think that can be so easily done. And to be quite honest, we're all going to go, right? And this isn't a bad way because there's people that have no time to be with their loved ones or to say the things they wanted to say and do the things they wanted to do. I just got back from Paris just a couple months ago. And so yeah, I think that it's important to just keep, like I said, a positive outlook.
I also belong to a Facebook chat of gay prostate cancer patient survivors. One of the things I think that, and it's not just a gay or a straight thing. If you do end up having the surgery and it does affect your sex life, I heard so many comments from people, guys who had said that this was going to be the worst part of the whole process. And I guess my input to them is don't let that define who you are. You're much more than that. And find other ways to find joy in your life.
You do have to find whatever brings you peace. And whether that's in a church, in a gathering with friends, family, you just have to reach out and they're on the journey with you. And so don't underestimate the support and prayers and the people who want to reach out to you and help you and let them, because that's the only way that they feel like they can contribute to your path and your success.
If you've recently been diagnosed with prostate cancer, one of the things that I would have liked a little more of was some more detailed options from the physicians. I had to do a lot of reading. They mentioned the top few things, but I think if they had spent a little more time on the options that you have, the side effects that can result from that, the projected outcomes, the success rates, those kinds of things, I would like to have seen a little bit more of that in my particular case. But I think that it goes kind of from doctor to doctor. I had wonderful doctors, don't get me wrong. But sometimes you just need a little bit more information, a little more one-on-one time just sometimes because if you've never been with anyone with prostate cancer, you don't know what questions to ask. And so that would be helpful.