Patient Interviews: Frank (68 years old)

Were you getting regular PSA tests before you were diagnosed?

Now here we're going back more than 10 years and at that time there was very little information about prostate cancer. The company where I worked had a Cadillac-type physical every year. But all they would do at the physical was a digital rectal exam and not a PSA, because they didn't think it was necessary. The physicals lulled me into a sense of complacency and I felt I didn't even need a family doctor, so I didn't have one.

Were you experiencing any symptoms?

Before I was diagnosed, I had frequent urination, especially at night. But I never associated this with prostate problems, didn't know that was a symptom. I just thought it was a function of getting older or drinking too much coffee at night. But that's definitely a warning sign.

I also had severe back pain, but I was a very active person and figured I was getting old. So I went to a chiropractor for about two years. He had taken x-rays and everything, but didn't know anything about the cancer.

How did you finally come to be diagnosed?

I don't remember exactly why I finally went to a family doctor, but ten years ago I got a complete physical with a PSA. And that was when I found I had an extremely elevated PSA of 6080. So my family doctor sent me to a urologist, who did a transrectal ultrasound and biopsy. And the biopsy samples all were very bad.

From there, I came down to the University of Pittsburgh Cancer Institute for bone scans, CT scans and the whole nine yards. The scans showed that the cancer had extensively spread through the bones, from my skull to my toes, the whole way.

My wife came with me for the diagnosis. She's a remarkable woman. Earlier that year, she'd been diagnosed with breast cancer and had a breast removed. And now, in the fall of 1990, I got diagnosed with advanced, metastatic prostate cancer. I was told I had six months to live if the treatment didn't work. And if the treatment did work, I might have two years.

Shortly after the diagnosis, I was at work and I just couldn't keep my mind on work, so I went home. And we have woods behind our house. So I just went down the woods and got mad and hollered at everybody and broke branches over trees and kicked things (and hurt myself in the process). Did a lot of dumb things. But I vented a lot of stress and tension. And I was really upset and mad at the world and mad at God and mad at everybody. And then I got that out of my system and I went on.

What treatment options were available to you?

My urologist at UPCI, Dr. Hakala, laid out all the options - I could do nothing, have an orchiectomy [surgical removal of the testicles, considered a form of hormone therapy], or have combination hormone therapy [also known as total androgen blockade]. So hormone therapy was the only treatment available for me. It would have been much easier to have the orchiectomy - it would have been a one-time procedure and less expensive in the long run. But from what I'd read, the combination hormone therapy gave me a few more months.

And from there, they got things under control. They started my treatment with flutamide (Eulexin) and a few weeks later I started on monthly goserelin acetate (Zoladex) injections.

What does the Zoladex implant feel like?

It's not that painful if they do it right. It hurts initially when they put the tube in. The pellet is deposited in your belly in the fatty tissue. Sometimes they go too deep and they hit the blood vessels and you run into a problem that way. Some places will numb the area first, some don't, but it doesn't really make a difference.

What kind of effects did you experience with the hormone therapy and did you know what to expect going in?

No, I really didn't know anything going in. Since it was the only alternative I had, I didn't really care. As for side effects, I experienced more fatigue and less drive. I used to be a 28-hours-a-day person and that was gone. I had some hot flashes, but nothing to really speak of. And I had maybe a little bit of breast swelling, but that comes with old age! There was a gradual loss of sexual drive and I eventually became impotent. Whether that was from the Zoladex or some of the other treatments is hard to say.

The hormone therapy worked well for about a year and a half. My PSA was tested every month. At the time, it took my PSA from over 6000 to less than 1. Actually, I was 0.5 for a while.

When did you realize that you had gone beyond the six months you were told you have to live?

I didn't, believe it or not. We were well past a year when I realized, hey, this is doing good and my PSA is down to 0.5. But I charted it. But I don't think I was consciously aware of that six-month period. I always had a pretty positive attitude about it. My wife and I also have a strong faith in God and I think that really helps a lot.

After a while, the PSA started to go up again. At that point, the only other option was chemotherapy. And from what I had read and all the people I had talked to, the standard chemotherapy wasn't really too good at that time.

What sources did you use for your research?

Well, our local library wasn't very good at all. The information was really old - from the 1950s - so I got most of my information from the Falk Library of the Health Sciences at the University of Pittsburgh. I also talked to friends, different doctors. I wasn't in contact with other men who had prostate cancer, but I talked to friends. I had confided in a friend of mine, another doctor and he directed me to Dr. Trump and his clinical trials for prostate cancer. (Dr. Trump was Co-Director of the Prostate and Urologic Cancer Center and Deputy Director, Clinical Investigations, UPCI.) These clinical trials included a Vitamin A program and a Vitamin D program, which were supposed to build up your body's resistance so it could control the cancer.

How did you feel about being part of a clinical trial?

I just felt that this was the way to go. My family and friends were nervous and tried to talk me out of it, but I thought, what did I have to lose? And I could always go back to conventional treatments. Fortunately for me, the trials worked pretty well and did control my PSA for a while.

I would highly recommend the clinical trials UPCI is running, because I haven't been disappointed. And I've been in all phases of clinical trials. Sometimes I was in on them from the very beginning, others were pretty far along. Every one of them has helped me.

I was on the Vitamin A for about a year and half. That was a pretty tough one with a lot of side effects - dry, cracked skin, irritation. I couldn't even go out in the sun for a little bit of time. It actually worked but of course it was very strong and in very high doses. And the Vitamin D program caused other side effects, but nothing that wasn't tolerable. I was on that for about six months before the PSA started to rise again.

I was also experiencing such severe bone pain down the left leg and into the foot that I could barely walk. So before I began the next treatment, a clinical trial in chemotherapy, Dr. Trump sent me to Dr. Deutsch, a radiation oncologist. I had a 6-day regimen of external radiation treatments in the pelvic area, for the pain. I don't know how much they helped, but apparently they did.

A few weeks later I started chemotherapy.

What was your experience with the chemotherapy?

I had chemotherapy with mitoxantrone every three weeks. I've had 15 or 16 chemo regimens, but have been off of it now for four or five months. When they started me on the chemo, my PSA was around 9.5. Within a month, I noticed that the chemo was helping with the pain. It eventually went down to 4.5.

I had a lot of fatigue with the chemo. It made me very tired. And I had a slight bit of nausea, nothing to get excited about. Of course, they gave me prednisone with the chemo and all that did was make me want to eat. Oh, my goodness, I love to eat! And I have trouble staying away from food anyway and this made it terrible. And the prednisone also gave me some puffiness and a little more fatigue. But I'm not on the prednisone now. They were also giving me Zantac (ranitidine) for stomach problems.

Did you lose your hair with the chemotherapy?

No, I started losing my hair on my own, before all this started!

Are you receiving any treatment now?

Throughout all my treatments, I've remained on hormone therapy, although I've switched between Zoladex and Lupron. Lupron is given by injection into your hip, instead of through an implant in your belly, like Zoladex. But when Zoladex came out with the three-month treatment, we went back to Zoladex.

Has there been a difference in your energy level since you've been off the chemotherapy?

Not really, but it could be due to a number of factors. I still like to walk as much as I can and I still take care of my yard, cut the grass and try to raise roses. I used to walk four miles a day, I've had some bone pain that I can take care of with ibuprofen and the fatigue has slowed me down a bit. Now I'd like to get back to a daily routine, but it's amazing once you break those regimens how hard it is to get back.

How is your PSA now?

It's gone back up to 7.6, so it's still pretty manageable. The doctors are not about to start me on anything until it starts to accelerate again. And I still get tested every month. If the PSA keeps going up, Dr. Trump told me there are other treatments we can try. And we may go back to the chemo but they wanted me to rest a little from that.

What advice would you give to men who have been diagnosed with prostate cancer?

Become an educated patient. It's the most important thing you can do. There's no question about that. If I'd known more about prostate cancer earlier, I wouldn't be in the situation I'm in today. I'm 68 and for the past 10 years I haven't been as healthy I could have been had I been diagnosed and taken care of this right away, although I still have a pretty decent life and I can't complain. You have to go with the cards they deal you.

If you're 50 or older, make sure you get a digital rectal examination and PSA test every year with your physical exam. If you have a family history of cancer, definitely start younger. I know that some men are uncomfortable with the idea of a digital rectal examination. That never really bothered me. That's part of what you need to do. And I don't know how you get the message across, other than by saying, it's your life you're talking about.

And if you do have a problem, I would recommend coming down to the University of Pittsburgh Cancer Institute or other large cancer center that has lots of experience. I wouldn't be here today if I hadn't done that. And more than likely, my wife wouldn't be here either. And we wouldn't have been able to go to Hawaii last month, our first vacation in a good many years.

Finally, don't be afraid if you get what sounds like a horrible diagnosis. I'm living testament to that. They gave me no more than two years to live and here I am, over 10 years later.

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