Patient Interviews

Paul (72 years old)

Did you have an annual PSA test and DRE before you were diagnosed?

Oh, no. Like most men I just procrastinated and put it off, telling myself that I didn't have time, as we're prone to do. We get caught up in our occupations and with family life. And I just didn't bother, until I started having symptoms.

How did you come to be diagnosed?

The problem seemed to start in 1996 with frequent urination, especially at night. And as time went on, waking up to urinate became more and more frequent until it was almost every hour. So I was waking up five or six times in the course of the night and already exhausted before I went to work in the morning.

My urologist and I kept checking on this, because I had two uncles, one 70 and the other 72, who died from prostate cancer back then when they didn't have PSAs and the sophisticated things they can do to detect this today. They procrastinated, too and didn't go to a urologist to have checkups. So once the symptoms started, I was getting checked every three months. And the PSA started to escalate each time. I had a normal digital rectal examination when my PSA was 6.4. But the urologist decided to do a biopsy when it rose to 9.5.

What does a biopsy feel like?

It's just a slight pinch, not even as bad as having your finger pricked with a needle. A lot of it has to do with frame of mind, too. If you go in thinking they're going to be terrible, they will be terrible. I mean, a lot of men are uncomfortable with DREs, too. Nobody likes them, but it's a very necessary part of living and it doesn't take long. You just want to relax and not worry about it. I mean, what's the alternative? The long-range effect is exactly what you're trying to determine.

When the biopsy results came back, they showed a small tumor on the far side of the prostate, where it couldn't be felt with a digital rectal exam.

How did you go about making your treatment decision?

The doctors will not tell you what to do; they'll offer you the options and say, "This is your decision. Here is what we know, based on our experience." That's what my urologist did. He just laid out a number of options: surgery, external beam radiation, seed implants. He put me in touch with different people who'd had all three procedures. And I started doing a lot of research, just going to the library, getting books and articles about prostate cancer.

When you first hear you have cancer, you think, "I'm going to die." But you're not necessarily going to die. You might, sure. But we also might die by walking across the street. We all have the right to see what might be best for us, not only physically but mentally. That's such a huge part of it and it's important to develop a positive attitude.

My advantage was that we detected it early. Surgery certainly was an option and that's what they recommend with younger men. But I wasn't happy about the possible side effects -- incontinence and impotence. And I also talked to some people who had this done and those were some of their problems. One guy said he had to wear a pad for three months after his surgery. You virtually have to learn to use your bladder all over again. So at my age, I kind of ruled that out.

What influenced me the most in my decision was a 1996 Fortune article written by Andy Grove, the CEO of Intel Corporation, about his experience with prostate seed implants. One of the things that Andy Grove determined was that if you were a candidate for the radiation seed implant, the chance of having a rising PSA after 5 years compared favorably to surgery. So I opted for the radiation seed implant.

Did you have any concerns about having an implant?

Well, the word "radiation" scares the heck out of everybody, I don't care how you try to dress it up. But I think that it helps if you do the research and talk to other people. The odds seemed good that I'd do well and the article by Andy Grove probably gave me more confidence than anything else.

What kind of advance preparation did you have to make for the implant?

For almost a year before I had the seed implants, I had Zoladex shots to shrink my tumor. They're hormone pellets that are implanted under the skin of your abdomen. The three-month injection cost $1500. Fortunately, through my insurance, I only had to pay $15 dollars. So I had four shots that cost me $60 out-of-pocket, but which would have cost me $6000.

Did you have any side effects from the Zoladex?

None at all. It was so funny because the syringe is a long needle -- 2 to 3 inches long. And when you look at it, you say, that's going in me? So I was lying on the table and the nurse who administers the shots came in. And we're talking about kids and all kinds of things and I said to her, "When are you going to do this?" And she said, "You're done. You can put your clothes back on." I absolutely did not know that she'd done it. I had no discomfort at all.

The first time I had it done, I was anticipating all kinds of pain. I know some people get a shot to numb them before the Zoladex injection. But I felt absolutely nothing.

What was the prostate seed implant procedure like?

It was very simple. It wasn't really any different than the preparations for a rectal exam. I had an enema the night before and in the morning. Then I went to UPMC Shadyside at 6:30 a.m. At 7:30 a.m. they started the procedure. You can have either local or general anesthesia and I chose to be awake. The procedure took about an hour and a half. My PSA at the time was 9.5 and my Gleason score was 6. They implanted 96 seeds. And it really wasn't uncomfortable at all. I mean, I was lying on my back in the stirrups and just talked to the people while they were doing it.

Then I spent about two hours in recovery and by 2 p.m. or 3 p.m. that afternoon, I was ready to go home. I actually could have gone back to work the next day, had I chosen to, but the doctor said to stay off my feet and stay home for a couple of days.

Did you have any side effects?

I was extremely fortunate. I had no side effects. Some of the other fellows who had this done said they had discomfort, a burning sensation where the implant was done. But I didn't even have any extensive kind of pain killers, just over-the-counter medications and that controlled it.

When did you notice that the symptoms you were having with urination started to decrease?

They started to diminish within weeks or a few short months after the procedure. You almost develop a habit of waking up so many times a night before having this done. And we're all creatures of habit anyway. So your body clock virtually dictates what you do every day. But more and more, instead of getting up every hour, I'd get up maybe in three hours, then four hours, then five hours. And now I sleep the whole night through.

How long did it take your PSA to go down?

I went back to see the radiation oncologist about four months after the procedure and he said I was progressing perfectly well. My PSA was dropping, but I don't remember what it was at that time. And he told me I didn't really need to see him anymore, but should continue checking my PSA with my urologist. About a year after the implant, my PSA was less than 1.0. I was astounded. And now, three years after the implant, my PSA is still less than 1.0.

How often do you go back to get your PSA checked?

At first it was every three months, then every six months. Then, last time I went, my urologist said, "You're perfectly normal. We don't have to test you again for a year."

Since your diagnosis, have you changed your lifestyle in any way, your diet or level of physical activity?

No. I still work eight days a week. But I think I'm fortunate in that I did have a positive attitude about things. I had confidence that I made the right decision and I think that made a big difference. I think that, just being human, there's always a small element of doubt. I mean, how can you possibly say that you're 100 percent sure that this is going to work? You just hope it's going to work and you make that decision and based on that, you hope that you made the right decision.

Did you ever have a problem with erectile dysfunction?

That's one of the symptoms they tell you that can develop from the implant. This may sound strange, but my wife passed away in 1998 and she had been ill for some time, so we hadn't had that kind of relationship for a long time. And since then, nothing has happened to test the waters, so I couldn't really give you any kind of an answer.

So you had a couple of years that were not easy.

Let me tell you what really happened. Within an eight-year period, my wife was diagnosed with lung cancer, my daughter with cervical cancer, my mother with uterine cancer and me with prostate cancer. It was like every two years, like it was contagious.

My daughter is fine now. She had a similar procedure done with the cervical cancer. They did a radiation implant right into the tumor itself to shrink the tumor before removing it surgically. And my mother came through her cancer surgery at age 83 with no problem, came home a couple of days later and recovered very quickly.

What advice would you give to men who have concerns about getting tested, or who have been diagnosed and are worried about prostate seed implants?

I keep telling my son and people that I know, don't just assume that you need to be age 60 to have your prostate checked. My son is 45 and because we have a history within our family, I think it's extremely important that you keep an eye on this.

As for the implant, the procedure isn't as frightening as you imagine it is. I think it's important to prepare yourself for it mentally. It comes down to asking yourself, what's the alternative? If you're worried about a little bit of pain or discomfort, well, what is the alternative? The process of educating yourself about your disease and your options -- the research, talking to other people who have experienced it -- will give you confidence to be able to go through it and realize, "This is the best thing for me."

What words of encouragement would you give to someone who's just been diagnosed?

Don't think that you're going to die in the next three months, because with the technology developing as quickly as it has today, we're learning more and more about how to deal with things. Have the confidence that you're going to live and that someone is out there better able to take care of you now than they were 10 years ago. As I said before, what's the alternative? And what's the harm in trying to think positively?

For more information on prostate cancer, please call the Cancer information and Referral Service at 412-647-2811.

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