Patient Interviews: Joe (54 years old)

Did you have regular PSA tests before you were diagnosed?

I'd get my PSA checked every few years through my 40s, when I'd get a TSA test for my low thyroid. My internist would do a PSA and a digital rectal exam. At the time, I didn't know what a PSA was. The internist never sat down with me and explained it. I didn't even know what a prostate gland was. This was all a complete mystery to me; PSA was just a particular test that a guy gets done when he's in his 40s and 50s.

Now that I look back on it, my PSAs were ranging from 1 to 2 -- they were below 4, so not a big concern. But I guess that over the years, they had gone up just a little bit -- maybe to 3 or 4 -- and he never really mentioned anything to me.

When did you become aware there was a problem?

I actually had some physical symptoms in the summer of 1998. After I would urinate I'd have some pain in the area of my bladder and my rectum. And this was very odd. At first I thought maybe it was hemorrhoids or something, but it didn't go away after a few days and seemed pretty severe at times. So I first went to my internist, who put me on Cipro, an antibiotic that's commonly used for bladder infections. And that seemed to help with those initial symptoms -- they went away. But I knew that I needed to see a urologist.

So after a few weeks had gone by, in the beginning of the fall of 1998, I went to a urologist. He did the digital rectal exam and found a suspicious result. He also did a PSA and this time it was up to 6.3.

The next course of action was a needle biopsy, which was done in November 1998. And that showed cancer in three of the samples. It was a moderately aggressive cancer, mid-range on the Gleason scale. I think it was on November 16, 1998, at age 52, I was told I have prostate cancer.

What was your immediate reaction to the news?

Right away that changes a whole lot of stuff in your life. Both of my parents died of cancer at relatively young ages. My father died of lung cancer at age 62 and my mother died of ovarian cancer at 55. This was 20 to 30 years ago. They didn't have the means of managing and detecting cancer as well as they do today. So I guess in the back of my mind, I kind of felt the cards were stacked against me anyway and I figured someday I was going to have to deal with cancer of some sort. I was hoping that I would get to be in my 70s or something before I had to deal with cancer, but here I was, 52 years old with a cancer diagnosis.

So on the way home, right after I got my diagnosis, I stopped at the bookstore. Maybe some people might find this an odd reaction. But I guess the part of me that was ready to freak out, that wasn't my first reaction. That would come later. Initially I wanted to be able to control what was going on in the situation. I wanted to educate myself. So I went to the medical science section and was surprised to find half a dozen different books on prostate health and men's health. So I picked a couple of them up and started educating myself on what I was up against.

This was almost like, okay, now I have a new hobby: learn about my prostate cancer and what I can expect and what can I do to stay alive. I have to find out about surgery, other treatments, what doctors do what. What does the prostate gland do? So I read books. I started talking to other men who have had prostate cancer or prostate surgery.

How did you find other men to talk to?

A couple of different ways. First, through my urologists. They actually gave me the phone numbers of a couple of former patients and I called them. Second, my wife and I have a close friend who's a nurse administrator and she knew a few men who had had prostate cancer. And just by word of mouth. It's like anything: once you get focused on something and you start talking to your friends, they say, "Oh, so-and-so's husband had that and he'd love to talk to you," or "Why don't you read this book -- this helped me a lot." And I have friends living on the West Coast who sent me books. One friend sent me a book about how to prepare yourself for surgery -- physically, mentally, spiritually. So I kind of wrapped myself around it.

Did you do any online research?

I went online a few times. I would punch in "prostate" and "prostate cancer," things like that. And a huge amount of sites would some up, many of them selling products to help with incontinence and impotence. This was all well and good, but I could get the same information from a pamphlet or a book, or talk to my urologist. Occasionally there'd be a web site like "Bob's Individual Story of Prostate Cancer." But I didn't rely heavily on the Internet for information at the time. I found I was getting enough information through all the other means.

How did you come to your decision about treatment?

I was getting impatient. Now, I've had some little bouts of skin cancer -- the squamous type -- and that doesn't bother me. It's on the outside. But if you have something internal, particularly with a gland or an organ, you just want to deal with it. I wanted to make it go away, as soon as I could.

So I started investigating radical prostatectomy. Right away you see the words "radical prostatectomy" -- oh, my God, what's "radical" -- not realizing that this means that they remove the whole prostate gland and some surrounding parts. It's not like it's some radical political movement. I read all this stuff about the surgery and I could see why it takes 2½ hours to do it. The prostate gland, it's not like it's just some little gland that they can snip off and pull out. They actually have to cut off part of the bottom of your bladder and resection the urethra -- it's like a major piece of work. And a skilled surgeon can do it so there won't down the road be some weird scar tissue or some kind of leaking.

I decided to go with surgery for a couple of reasons. One, my cancer hadn't spread outside the prostate gland. Two, being in my early 50s, I wanted a treatment that would remove the cancer completely. And being relatively young, I could withstand the surgery without any problem.

So I looked at the options. The options in surgery are, you can go for a nerve-sparing type of radical prostatectomy (where the nerves controlling erections are not removed if they appear to be cancer-free) or traditional surgery (where the nerves are removed). I initially met with a doctor who did the nerve-sparing type of surgery. I liked him and he had an excellent reputation. We were going to set a date for surgery in December. Then he severely hurt his back and couldn't schedule me for surgery in December. He wanted to postpone it a month.

I was at this point getting more and more impatient about the whole thing and wanted my bad prostate gland removed. So I said to the first surgeon, "Thank you, but no thank you." I went and contacted a second doctor who had an excellent reputation for doing this type of surgery, but not the nerve-sparing procedure. However, he was available at the time I wanted to have the surgery. So I opted to go ahead and have the traditional surgery.

Did your wife play a role in your decision about your surgery?

Oh, yes. In fact, she was there with me when I went and talked to the different doctors. I think she was just as impatient as I was about getting something done, although in the whole scope of things, the cancer was probably developing in me for years. Waiting another couple of weeks or even a couple of months would probably not have been a risk.

Were there other reasons you scheduled the surgery when you did?

Yes. I actually had my surgery done on December 23, 1998, so I was in the hospital for Christmas day. My feeling was, I was going to have a pretty lousy Christmas anyway, so why spend it at home? Why not just go to the hospital? I was in the hospital four days and four nights, I think. The hospital wasn't crowded, I had all the attention of the staff, I think there were only a half dozen people on my floor. For me personally, it really was not a sad thing to be in the hospital for that particular Christmas. It's not like I was going to spend every Christmas in the hospital, just that one.

Plus, work tends to be slow that time of year. You know, I could have waited three or four weeks and had the other doctor do his thing. But it didn't happen that way. Fate didn't let the first surgeon be available for me… maybe there's something behind all that, I don't know. But everyone I talked to said the doctor who did my surgery had an excellent reputation as a urologist and a surgeon and I went ahead and had the surgery. From a surgical and medical point of view -- and the quality of the hospital -- I have no horror stories. He did an excellent job, there were no complications, everything went as predicted.

I guess I probably could have had the nerve-sparing technique done if I had been patient and waited for the first doctor to recover from his back injury. There are times when I really regretted doing it that way, but like I say, it's water under the bridge. And the fact that I had the traditional surgery done, I feel completely confident that all the cancer is removed and the prognosis is excellent.

How did you feel after you got home from the hospital?

I would get kind of tired -- I mean, I was recuperating energy-wise from the surgery -- but I had no major complications from the surgery. There were a couple of occasions where I had some blood in my urine, but that's normal after this kind of surgery. And you have a catheter in you for two to three weeks, which can be a challenge. I didn't go out much and I couldn't drive. It was at a real cold time of year and there were a lot of ice storms at the time, so people weren't going out anyway. But my friend would come over in the daytime and a couple of times he'd take me for a ride to the mall.

I had the catheter taken out after two weeks. Before they take the catheter out, they fill your bladder with fluorescent liquid and look at it through a cystoscope, so they can actually see your bladder and see if there's any leakage. They check and make sure there are no leaks in that surgical connection between the bladder and the urethra. And mine was fine.

Did you have any problems with incontinence?

I did have two or three weeks of incontinence. Like, in the morning, when I have two or three cups of tea, a half hour later I had to urinate. Right after the catheter is removed, you really can't control the urine coming out -- you'd better have a pad on. It seemed to be when I'd sit down, like at my desk, I could tell I was urinating. And then I'd get up and be able to hold it a little bit and get to the bathroom and finish. And this went on for a few weeks.

There are two sets of muscles that hold the urine in the bladder. In radical prostatectomy, they actually remove one of the sets of sphincter muscles. So that's why you have to retrain the second set of muscles -- the pelvic floor muscles -- to do the job that the other muscles used to do.

So I had to wear a pad and I had to practice the Kegel exercises and strengthen the muscles that control the bladder. But it seemed like in my third week after the catheter was out -- this would have been about five or six weeks after surgery -- I was getting pretty good at knowing when I needed to void and being able to casually get to a toilet with control.

Even today, I consider myself 99.9 percent confident. Sometimes if my bladder is full and I squat down on the floor, I might have a couple of drops come out. But on the whole scale of challenges to deal with, if that's the one small price to pay for getting rid of cancer, then there's no contest.

When you made the decision to have the non-nerve-sparing surgery, what did you know about the extent of erectile dysfunction that would follow?

Going into this initially, not really even knowing what a prostate gland was and ureters and urethra, the male plumbing -- men just aren't taught. You know, as long as it works, fine. Women are much more in tune with their urogenital systems than men are, just because of their monthly cycles. With men, you wake up in the morning with an erection and it's like, "oh, I guess it works." So the whole thing for men is different.

My surgeon is known for pulling no punches. He tells you exactly how things are. And he sat down with my wife and me and he said, "With this surgery, you'll be 100% impotent." Of course, I didn't even have a good definition of impotence. There's a difference between impotence and erectile function, that's one thing. And if you're talking about sperm production and the ability to fertilize an egg, that's something else. Also, how you react depends on how your spouse or partner deals with it. If it's a big issue for them, then it's going to be a big issue for you. If it's not that important to your spouse and you can enjoy each other's intimate company without functioning the way you used to have it, so be it. So every case is different.

And when you're going through the whole process of getting yourself psyched up for surgery, then recovery from surgery and dealing with your incontinence, being able to perform sexually isn't right on the front of your agenda. At the time, I felt, well, six months or a year from now, I'll work with what I've got. I'll try to discover a new me, sexually. I'll see what works and what doesn't work, I'll investigate what products are on the market.

What did you find out?

First of all, I learned that surgery doesn't necessarily kill your functioning completely and there are a couple of products that can help. I don't think Viagra works, because it affects the nerves that make the blood flow to the penis. But if those nerves are lost, Viagra has no effect. One product that I found had some modest success is Muse, which is an intraurethral suppository. It takes a little bit of getting used to. It's a chemical that mimics the natural chemical in the body that dilates blood vessels so that it lets blood flow into the penis and helps you get a little bit more of an erection. So I had a little bit of success with that.

One question that a guy might have is, can you still masturbate? I can attest to the fact that you can. It took a few months before I was at a point where I wanted to even experiment with that after surgery, but you can. You do not lose your ability to have an orgasm. It's just that it's a dry orgasm, there's no ejaculate. When they remove your prostate gland, they also remove your seminal vesicles, which are the storage areas for semen. But the mechanisms and nerves which give you an orgasm are still there and work fine.

And a man doesn't have to have a complete erection to stimulate himself or have his partner stimulate him to the point of orgasm. Initially I didn't think a whole lot about it, but a few months after I'd recuperated from the surgery, I didn't have cancer, hopefully, my bladder was working okay -- I could urinate in the toilet -- I wasn't having a problem with incontinence and I could pleasure myself when I felt like it. So that kind of cleared up for me what was lost and what wasn't.

As far as libido after surgery: Your interest and ability to think about sexual activity is not changed. Talking about sexuality after surgery like this, some of the pleasure that we all get from being sexual beings is fantasy, regardless of whether there's a function or activity involved with it. You don't lose your fantasies, you don't lose your libido, you don't lose your appreciation for things that are sexy.

You've often heard that if someone loses their eyesight, that their other senses may tend to become a little sharper. Maybe they can smell a little better or hear a little better, or recognize things by touch a little better. Well, I kind of want that concept to work for me in the fact that by losing my ability to have erections that I had when I was in my 20s, I want to sharpen my other senses that are involved with sexual pleasure: sight, smell, touch. And that's one way that I've looked at it to say that, okay, I've lost a major thing in one area, but I'm going to gain back equal power in these other areas, with the other senses.

How has your wife reacted through this experience?

My wife has a hard time dealing with serious medical, surgical challenges. Her initial reaction to my whole ordeal was fear. And I couldn't get her to join me in any of the groups that I went to, or in any kind of growth as far as dealing with any of that. At the time, I was kind of hurt by that, but it doesn't bother me now. I still love her dearly and, in fact, although we may have lost certain things sexually together, in some ways we're closer as friends. I don't know if I can explain it very well, but in some ways our relationship grew closer since my loss and a part of it we don't have anymore.

Did you make any changes in your lifestyle since your diagnosis?

When someone gets a cancer diagnosis, one of the first questions they ask themselves is, "Why did I get cancer? And what can I do to control the causes?" In my case, I felt that genetics was an overriding reason. Both of my parents died of cancer -- my father of lung cancer at age 62, my mother of ovarian cancer at 55. Cancer can also have an environmental cause: something from the outside, some kind of toxin. There's some suspicion that a high-fat diet can is related to prostate cancer. And some people think stress may play a role.

So I'm looking at all these cause-and-effects and trying to figure out, why did I end up with prostate cancer? And of course, I have stress in my life and I live in Western culture so I have a somewhat fatty diet and toxins in the environment -- sure. So I can't do anything about the genetic makeup, but I can have control over my diet and my environment and stress. So part of my lifestyle now is dealing with those issues.

Of all the things that I was doing, I relied heavily on a lot of different things to keep myself together and to grow. My wife and I both started going to church again. I was raised as a Catholic and for many years, didn't practice my religion. We started going to one of the older Catholic churches, where my wife's grandparents had been married at the turn of the century. I added a number of things to my diet that are considered anti-cancer foods, such as flaxseed oil, soy protein powder, more tomato products, different vitamins. I started exercising regularly. I started seeing a counselor a few months after surgery.

What prompted you to see a counselor?

One of the problems that I had developed over the past few years was with sleep. I have what's called "early morning rise syndrome." It doesn't happen all the time, but maybe 6 to 10 nights out of the month, no matter how tired I am, no matter when I go to sleep, 4:30 in the morning I'm wide awake, kind of jittery, nervous, anxious. Usually within an hour, I can fall back to sleep, get up at 6:30 or 7:00 and I'm okay. Once in a while I'll just be very anxious and have to take a sleeping pill to sleep for a few hours.

The sleep problem -- that's a symptom of depression. And I had developed some periods after the surgery where I was really having problems with depression. So I initially went to a counselor -- a psychologist -- who can't prescribe drugs. So I went to a psychiatrist who wanted to put me on one of the major anti-depressants for a year and a half. This could have been the way to go but I thought, before I commit to that, let me try something that's over-the-counter, that's natural and I can regulate a little better on my own. So I started taking St. John's Wort. And within a few days, the depressions went away. Now whether there was some placebo effect there, I don't know. Or maybe I'm sensitive to the minute amount of chemical that's in the St. John's Wort that seems to help me. But if I have a period of time coming up that I'm feeling anxious about or I slip into a depression, I might increase my St. John's Wort for a few days and it seems to level things out for me.

Did you continue to see the counselor?

Yes, I went, at the time, once a week, then every couple of weeks. Now I go once a month. I get a lot of comfort in talking with women about my situation and my challenges. In some ways, this counselor is the only woman I can talk to about these extremely intimate subjects. Although I don't think she's ever had a client in my situation, she's had some good suggestions about how to look at my strengths and abilities.

What kind of medical followup do you get now?

The standard medical followup is, for a period of two years after surgery, every three months, you go to your urologist for a PSA blood test and a digital rectal exam. Even though your prostate gland is gone, they want to see if there's anything going on there, like sensitivity, anything still growing, any lumps. Oh yeah, that's as important as the blood test. A good urologist who does so many of these digital exams on a daily basis can sense that there's something wrong.

Do you still have a PSA?

The way the laboratory studies go, the PSA number never ends up being absolute zero. My readings have always been less than 0.1 since the surgery. If it were to start creeping up again, that means that there are active prostate gland cells somewhere in the body that have metastasized or gone somewhere and are active.

The end of my two-year period came up in December and my PSA is still low -- something to celebrate. So now, instead of going to the urologist for a checkup every three months, I'll go every six months or in a year. I don't know if, in the case of prostate cancer, they ever stamp you totally cured. My urologist told me of cases of guys whose PSA has gone up 15 to 20 years after surgery. You know, somewhere there were some prostate cancer cells that were dormant all these years and they started being active again. But I'm 54 years old now and hopefully have a lot of years ahead of me to monitor PSA. My goal is to live to be 100 and cancer-free. And all I can do to work towards that is be mindful of my diet and exercise and try to avoid bizarre toxins and get checked up regularly.

You've also been involved in prostate cancer awareness.

A lot of men, once they have their surgery -- particularly when the treatment gets rid of the cancer -- don't want to talk about the fact that they've had prostate cancer. They just want to be done with the whole thing. But I find that I talk to other people about health issues more. I try to encourage my male friends to get checkups. And I was involved in a huge study that Carnegie Mellon University did. I also put together a video on prostate cancer and I was involved with a public information poster. So I've kept kind of proactive in the area of men's health.

Why do you think you're so comfortable talking about your experiences?

I don't have a problem with talking about these things. It's not like I was a bad person and that's why I had prostate cancer. It's nothing to be ashamed of. It's like, part of my body didn't work right and got cancer. I don't feel any guilt over it, so I have no problem in trying to convince other men that they shouldn't feel guilty. I don't know what else I could have done to avoid prostate cancer. It's something that men aren't educated about that much. I think they are more now. I mean, when I was growing up, nobody knew what a prostate gland was. Now I think men are a little more savvy about these things. The topic is getting more media attention than it used to.

I guess part of the reason is that I hate to see other guys go through what I've gone through and maybe I can help them get through it a little easier. I like to help with the movement. But I also feel a little bit of pride in the sense that… I don't want to look at myself as a cancer victim anymore. I want to look at myself as a cancer survivor. And by keeping the topic on the table, it helps me reaffirm that I'm a cancer survivor.

What would you say to men who are uncomfortable with the idea of a digital rectal examination?

If you just look at it on face value, most guys can't deal with it if you say, "The doctor is going to put a rubber cover on his finger, put his finger in your rectum and move it around a bit". And the doctor doing the exam is usually another guy. You just have to get beyond that and understand that this is a medical procedure. It's a technique that a doctor uses to see if your prostate gland is inflamed or enlarged. The exam takes about 8 or 10 seconds. It has nothing to do with sexuality. I've had women doctors give me DREs and believe me, there was nothing sexual about it.

My message to guys who have trouble with the idea is, get over it. No one ever died of a DRE. You can die of prostate cancer. And these are the tools that medical science has to find out if you do have cancer. If not for the digital rectal exam and the PSA blood test, I probably wouldn't be here today. My prostate cancer could have spread way outside of my prostate gland to my bones or lungs and I wouldn't be talking to you right now, two years after surgery. I'd be in a hospital dying.

Do you have any other advice for men who have just been diagnosed?

Prostate cancer, if caught early, has extremely high success rates in treatment. It's going to be a lifestyle change; it's going to be a challenge. But you can survive it. You can make some adaptations in your life to still get as much joy and pleasure out of life without your prostate gland as you had before. Educate yourself through reading or the Internet, or through talking with friends and medical professionals. Talk to a psychologist if you're having some emotional problems around the whole issue. But go outside yourself for answers to your questions.

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