Gary H spoke with Prostatepedia about prostate cancer journey and the choices he’s made along the way.
How were you initially diagnosed with prostate cancer?
Gary H: I live in Colorado, and I get a physical every year. I didn’t know this, but my doctor started checking my PSA at 40. About five years ago, when I was 54, my doctor said my PSA went up from 2.0 to about 4.4. He said there was a small chance of cancer, but when it gets up to that number, it’s important to check it, so he recommended a biopsy. I went in there just for a physical. Next thing you know, I’m going to get a biopsy.
I found a good doc, went in, and did the biopsy. He did about 12 needles. It turned out that I had some cancer in certain parts of my prostate.
He said, “You’re a young guy. Just go take it out.” But I started researching more and more, and because my PSA wasn’t going up very fast, I started the journey looking at what to do.
Where did you go for research? Did you turn to the internet? Friends?
Gary H: Yes. I talked to people I know who knew someone who went through it. I just talked to lots of people who had a friend, brother, or relative, and I just called them. From them, I heard everything from “I had it taken out” to “active surveillance.” I was getting calls about the proton or doing brachy. I was amazed by how many different approaches there are. I got a feeling for what I needed to do, and then I talked to four or five top surgeons and in different places, like Sloan Kettering, Johns Hopkins, and MD Anderson.
You did your due diligence.
Gary H: I sure did. I did everything I could possibly do, and from what I understood, if PSA is under 10, it hasn’t spread. I had about 8, but it wasn’t going very fast. I found a fairly young fellow in Denver that I had a lot of confidence in. After speaking with about seven people who had it removed and told me what to expect, I elected to have it removed. That was a big decision.
How did you find the surgeon that you ended up going with?
Gary H: I felt that someone who had done thousands of prostatectomies was just knocking them out, going right through them and probably pretty fast. I wanted someone who hadn’t done so many but who really took his time, someone very serious about it, someone who cared maybe a little more. The surgery may take only an hour, but I wanted a meticulous person.
A friend of mine who sold healthcare products in hospitals all over spoke very highly of this one doctor in Colorado. That’s how I found my doctor. Then I had to decide between the old fashioned or robotic way. While the guys that go in there with their hands can feel what’s going on, which can be beneficial, there can be a lot more bleeding. I chose robotic because there would be less bleeding, and I’m glad I did.
Did you have any side effects after the surgery?
Gary H: Not really. Because I was young, they said I should be fine, and I really didn’t have any side effects. It took me a little longer to heal than I thought it would. I started exercising maybe before I should’ve. I should’ve waited a little bit longer.
Otherwise, everything went the way it was supposed to, and everything was great. That was a little over three years ago. I have been as athletic as ever, and I never had a problem with incontinence.
What kind of monitoring did they do after the surgery?
Gary H: About every three months, for about three years, I had my PSA checked. About five months ago, my PSA showed up as 0.02. Before that, it was 0.01, which is what they call undetectable. It’s still undetectable, but it went up to 0.06. I just had another test, and I’m waiting on the results. It’s a whole new program now.
As far as what I’ve learned, the doubling time is the big thing, and so it’s been doubling every two or three months, which is pretty quick. But the number is very low. I’m starting to ask questions again, but the speed is the concern, not so much the number.
Right: the velocity, they say.
Gary H: Right. Depending on this new test, I may have it radiated.
Is this something your doctor suggested, or is this a result of your previous research and discussions with other men?
Gary H: Probably a combination. My doctor initially told me that if it gets to 0.20, we should look at doing radiation and maybe hormone. Then, it was only 0.02, so I had a long way to go. Because of the speed of it, he advised to just have it radiated, that I didn’t need the hormone at this point. Because the doubling time is minimal but going faster, the velocity threw me a curve ball.
Have you had any imaging studies to see what’s going on, or is it so far just blood tests that you’re getting?
Gary H: No. No imaging. It’s because the number is so low. They say they wouldn’t be able to detect anything. But I plan to probably do the imaging. My one doc says it doesn’t get in your bones until it goes up to 40 or 50. A PSA of 0.03 or even 0.06 is really just starting to get going, so it’s most likely still in the bed.
For right now, you’re just in a waiting game, right?
Gary H: Yeah. I’m waiting today, actually. But I’m not concerned or worried. It’s a nonissue because of all the information. The more you know, the more comfortable you are. And it’s really out of my mind until maybe the day I’ve got to go and have blood work. Then, I feel like I’m in the electric chair for the next six to eight hours until I find out.
There’s that waiting thing, right?
Gary H: That’s right. That’s the only real negative, I suppose.
They call that PSA anxiety.
Gary H: Yeah. There you go. And now I’m not too worried. There are lots of great technologies and options. It’s just the radiation that concerns me, really. I’ve got to be in one place for two months. That’s the thing.
There are many good radiation therapists out there, so I’m sure you’ll be in good hands. It’s also good to have an action plan for what you would do next if you need to take more action, right?
Gary H: It sure is comforting that way. Now, what I went through with prostate cancer is not the same as other forms of cancers. I guess I could say I’m very fortunate to have found it when I did and to have had a doctor that was checking me all the time.
Right. You didn’t even know you were getting your PSA checked.
Gary H: I didn’t even know.
Do you have any thoughts for other men who are newly diagnosed or in a similar situation to yours?
Gary H: When you first hear about it, your initial reaction is: okay, what does that mean? Prostate cancer hasn’t really= changed my life. I still exercise. I feel great. I compete as a golfer. It’s not like all of a sudden I’ve got to go and sit in a chair, and read a book for the rest of my life.
It’s just a nuisance more than anything.
That’s if you stay on top of it. Now, of course, it could’ve been a lot worse. I had an uncle who passed away back in 1982 of prostate cancer, so it was in my family. He had waited and waited. He was supposed to have it out, but he was afraid, so he waited an extra year or two. By then, it was too late.
Do what you have to do initially, and learn as much as you can about your disease. There are lots of people to talk to and options out there.
At one point, for example, I was going to do the brachy. Once, I almost did the cryo. I was actually up at 6:00 am getting ready to go to the hospital for the cryo treatment, but I didn’t. I just didn’t feel right. I went the aggressive route and had it removed. Just do what you have to do. It’s not a painful experience, really. It’s more of a nuisance from your daily activities.
You have to step back, reevaluate, and take some time. Figure out what approach to take, and go that route.
What about reaching out to other men because it sounds like you really did? You had a lot of discussions with your friends and family. Would you recommend that other men do that as well?
Gary H: Oh, absolutely. Everybody’s different. I know people who are not very social and just rely on the internet. Others will talk to every Tom, Dick, and Harry, and that’s how I was. I did a little bit of everything. I had three close pals who had it, so I talked to them.
Everybody’s an individual and different about what approach they want to take. I have a friend who has a similar situation to mine, but he’s chosen active surveillance. He’s really staying right around that number, and it’s not going anywhere.
You do read conflicting things, for example, that PSA is not important, but it is important. If it’s on the move, you need to do something about it. So, reaching out and talking with other men is important, even just to sort through conflicting information.
People find it helpful to listen to other men’s stories.
Gary H: I like it a lot. I travel all over as a competitive golfer, and I always wanted to hook up with some organization, so while traveling, I could speak in different towns each week. I am competing. I’m out there. I’ve been through it all. I’d like to share with others.
There’s still a bit of a cultural shyness or reticence about speaking about prostate cancer. Perhaps it’s a gender thing, but a lot of men are hesitant to talk about it.
Gary H: Yeah. I’m not. I’m not at all.
Any way you can get the dialogue out there is good.
Gary H: I’m very open about it. I don’t have a problem. It’s a certain age. It’s not like an 18-year-old so much. We’re older now. Let’s talk about it.