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Voices of Experience, Stories of Strength

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John Andersen

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John shares how he repeatedly pushed for answers despite having a low PSA, negative imaging, and reassurances that he did not fit the typical profile for prostate cancer. Trusting his instincts ultimately led to a biopsy that revealed prostate cancer and shaped his decision to pursue surgery, reinforcing the importance of continuing to ask questions and seek answers when something does not feel right.

 

My name is John Andersen. I live out in East County, San Diego. I probably knew what most men knew as I'd heard of it. I might've known one or two people that had gone through it. I didn't actually know one... It's not something that's as commonly discussed. The people I'd known through my working career who had gone through it kept it to themselves, and you never really knew. I just heard somebody had prostate cancer. I didn't know much about it. About five years ago was when it really started to be...

I had reason to be concerned. My mother died of cancer. My sister had cancer. There was always this underlying thing that there might be some genetic link. I had read something somewhere. Also, I had a funny... My mother took a drug called diethylbesterol, DES. When I was in the womb back in the 50s, it was considered a miracle drug in the day for an anti-miscarriage.

So it had some side effects that affected my sister. It didn't affect me that I knew about at any rate, but it put the seed of doubt into what could come in the future. I'm an aviator, I'm a professional pilot, and I had gone in for my annual exam. And the young doctor that was in there was looking at my chart, and he looks at my chart and he says, "Oh, you're one of those." And I said, "What's one of those?" He says, "You're a DES son, diethylbesterol." And I said, "Well, yeah, I am. And yeah, I don't know if that means anything."

I said, "My sister was affected by it. My mom died of a DES related cancer." He said, "Oh, oh." He says, "No." He says, "You've got to watch that." He said, "There's no link that says you're going to get prostate cancer or anything else more than anyone else." But he said, "The animal studies indicate you might get something that's the sneaky one." And I went, "Oh, great." So I go, "Okay, thank you."

And he was young. He looked like he was 13. He looked like Doogie Howser or Batman. He put a seed in my head, and from that point on, I was primed for it. Now, I don't know if it played a role in anything because there's no studies that prove that. Then a couple years later, which would put us about five years ago, I asked my doctor for a PSA test. He ran it.

It was pretty low, one something, and it began to rise a little bit. And over the course of the next couple of years, as I go in from my airmen's medicals, it was rising. So I told him about DES and I said, "Maybe we need to look at something further." And he said, "Well, your rectal exam is normal and PSA is only about two." He said, "I think you're fine." So we let it run a little bit.

We did another PSA, and by now it's two to three, and it's going up. And he says, "I think you're fine." I said, "I really want to do something." So he referred me to a urologist here in San Diego, a pretty large office. And the urologist examined me and said, "Hey, you look great. And the DES thing is usually not a factor. We haven't found it related to anything in men through human studies," I should say.

And so I said, "Well, okay." So I leave, get another PSA, now it's up again to the two something, to five or whatever. And I went in there and I just said, "I think something's really wrong." And he says, "Well, you'd really don't fit it, but based on PSA velocity, we could get you an MRI. That's under the bell curve of treatment based on insurance and other things." So they gave me an MRI.

MRI comes back negative. I was at PI-RADS 1 or might've been a two. I can't remember, but it was negative because he came back, and looked at that and said, "John, your MRI is negative. You look good. Have a nice life. Well, watch your PSA." Six months later, the PSA is kicking up again around two, six or seven, and I still had some symptoms, which was a little bit of difficulty urinating. There was some other things going on that were weird.

I had a little hematuria thing going on, and that was making me nervous, but they all said that could be normal with this or this, or this. So finally, I go make another appointment, go back in and I met with an NP and nurse practitioner in this urology center. And I said, "Hey, I think I've got a problem going on."

And she said, "Well, I understand your concerns, but I'll tell you what, you don't really fit it, but we're going to put you in for a biopsy." So I went in for a biopsy, doctor was not particularly happy I was there because I didn't fit it. And he brings me in and he said, "John, you have a negative MRI. You have a PSA of 2.5." He called it two. "Why are we here?"

And I said. "Because I think something's really wrong." I said, "Those symptoms are not abating, and I have a family history, I think." And so he says, "Okay." Gets on the table and search the ultrasound one and there's nothing, absolutely nothing. He said, "John, this is an unnecessary test." And I said, "There's something wrong. I'll pay for the biopsy." This is only two years ago now that I did this, two years ago, whatever years now.

And he goes, "Well, we're here. Okay." And so he does the 12 cores. Two weeks later, comes back, he comes in, sprints into the office with a chart saying, "John, you have prostate cancer. It looks like Gleason 3+4, sizable lesion." He said, "We ran a decipher. It's favorable." But he said, "John, I've never seen this before." I said, "I am so glad you pushed." He said, "You just don't fit the curve. You don't fit it."

And he said, "But yeah, PSA of two, MRI negative, ultrasound negative." He said, "No, it's there in each treatment." And so from that point on, then it was just a treatment decision. And unfortunately, these treatment decisions aren't always that easy. I would like focal, but because it was MRI negative, PSA low, MRI negative, that just took... So you have all these treatment options on the table, and suddenly someone says, "Not good MRI resolution."

Guess what? You can just push that one off the table and push that off the table, and suddenly your treatments aren't looking so good. Also, with low PSA, there was some concerns about monitoring PSA because it's used to monitor whether or not you get a recurrence. And so if the PSA, with low PSA prostate cancer, it's harder to monitor. And this particular urologist, it's just his credit.

He looked at me and he says, "Normally, John, I'd send you in for SBRT." He said, "The radiologist, because of the concern that we aren't getting good resolution of your cancer, could be not just in the prostate, could be somewhere else, he'd probably throw a broad net." That was the term. And he said, "There could be some side effects." He says, "Because it may be difficult just to target the prostate, and it may not be your benefit." So he said, "You'd probably do well to get to zero." That's his exact words. "You do well to get to PSA zero," and I knew right away what he meant.

So at that point on, I made the decision to go with a prostatectomy because that would afford me the ability to come back and do the radiation later if I needed that. Because with the hematuria going on for almost three years, I was concerned that, to me, is it's trying to spread. I don't know. And so that's how I got to prostatectomy a year or 14 months ago. It's funny, I didn't tell my kids. I don't want them... I grew up and my mom got cancer young, and that becomes all consuming. So I didn't tell my kid, but my wife and I, we discussed it and I said, "These are the options." I said, "I really only have, in my opinion, one good option, and that's that."

We talked about side effects and the rest of that, and she was very supportive. No, it's a scary thing. The surgery was, I don't want to say easy. It was really straightforward. I had a few months ahead to do it. The surgeon's team recommended that I do Kegel exercises, control my weight. My weight wasn't really high. I had pretty low body index, but I kept it there. I did cardio all the time anyway. I was a five-day cardio guy before the cancer. And I did more of that, and went in for the surgery pretty well-prepared. The surgery itself was uneventful for me.

I mean, I came out, you got the holes poked in you. I had no catheter bag. Two weeks later, I go back in and they pull the catheter, and not one bit of incontinence. I took a whole box of Depends and threw them away. I never needed it since, so two thumbs up on that. As an aviator, because the surgeon asked me, I talked to various surgeons.

They're all great, but this one particular surgeon, Dr. Ahlering, he said, "John, what's your number one concern?" And I said, "I'm a pilot. I can't be dealing with incontinence because I can't always get up. I can't do this stuff." And he looked at me and he said, "I'm really good at that." And I said, "You're hired." And he was really good at that. And so yeah, it went fine. Everything went fine. And I get the PSA checked every six months. It stayed undetectable, except when they did the wrong test. It had a different threshold. That scared me for a little bit. Then it turned out that was the wrong test. But it's been undetectable.

And I mean, the surgeons, he gets on the telemed phone with me every six months. So I've seen him now about three, four times or something. Well, it's only been 14, but he saw me at one month, three months, six. So it's been good. That process is really good. I feel good. I feel pretty good. There's a tad of ED still there. I'm 69, I'm going to be a little older, hit the big 70 this year, but that is slowly abating. So I have to say I feel good. I feel good. I think my decision for surgery was good. I wouldn't change a thing. I think the thing I would've liked was earlier detection.

So to be completely honest, the system tries to fit us all into one bell curve of diagnosis and treatment. We all don't fit there. Therefore, you really, I would encourage people to, if they suspect anything, to read and get ahead of it, but I feel good. This whole process of having trouble getting diagnosed because it was unusual, in all fairness to the medical system, the doctors, there's no problem with that.

But when you're an outlier, things get a little tough, and there's outliers out there with us. One thing I would encourage men to do is not to be so shy about sharing their adventure. My best friend, I found out after I told him, had been through this eight years earlier, and it would've helped if I had known that, but he was too embarrassed to tell his best friend what he had gone through.

He doesn't live here, so I wouldn't know. But I have since taken this position that I share it, which is why I'm here. I'm not embarrassed to share it. And I have, unfortunately or fortunately, I've told my accountant and other people, and I've unfortunately, unfortunately, have gotten five other men enrolled in this undesirable club this past year in 2025. They're very grateful, by the way.

But at the right time and place, I would encourage all men, if you're dealing with this, at the right time and place, you might share this adventure and encourage the other men to get their PSA checked. And one problem is right now that some doctors aren't recommending PSA past the age of 70. I disagree with that. I think that the threshold of a PSA of four, for example, from my age, 65 to whatever, I think I disagree with that.

It should be half that. I would say at PSA two, you should be getting some sort of a second look. And so that's it. That's what I tell men, go out, don't be shy about it, get out of the closet with it a little bit. Doesn't mean you run down the street, but at the right time and place, say, "Hey, you wouldn't believe what I just been through." "What?" And when they hear it, they act just like, "Oh my gosh, I've heard about that before. Wait a minute, I'm 60 something years old," or, "I'm 70, and maybe I need to get my PSA check," and I say yes.

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