Patient Interviews

Jerry (64 years old)

Did you have regular PSA tests before you were diagnosed?

I always went for regular checkups with an internist. Five years ago, he looked at my blood tests and said my PSA was up. It had been checked two years before and had doubled from 4 to 8. So he said, "I'd like to send you to a urologist, just to get checked out. There could be a number of reasons why your PSA's higher right now - you might have an infection, it could be a number of things." Although I'd had a couple of minor bouts with prostatitis in the past, this time I didn't have any symptoms or discomfort. So my internist sent me to a urologic surgeon at UPMC, who repeated the PSA just to be sure. And he said, "Well, we don't see any infection. I'd like to do a biopsy."

What did your biopsy feel like?

It felt like somebody put a rubber band inside me and snapped it. That is exactly what it feels like. No more and no less. And actually the first time, it was like, "Oh, wow. What was that?" And my urologist said, "That was it. We got one sample. Now we need five more." And I said, "Okay. I can take that. It's no big deal." And before I knew it, we were done. I couldn't believe it.

I was so scared ahead of time. They took my blood pressure and it was something like 200/100. They were not going to do the test because my blood pressure was so high. I was so worried. I didn't realize I was that scared, but I was. I thought they were going to go in with a scalpel and take out a chunk. And here it's just this little needle that goes in real quickly, takes a little bite and a couple of minutes later you're done. If I'd had that information before my biopsy, it would have been a big help.

When did you receive your diagnosis?

On Halloween afternoon, October 31, 1995, I got a phone message from my urologist. I called him back and he wasn't there. Finally, I was driving home from West Virginia, where I worked at the time and he got me on the car phone. He said, "Jerry, I've got good news and bad news. The bad news is that we did detect some cancer. The good news is that it seems to be totally inside the capsule, but we should treat it. I'd like to see you and your wife in the next day or two and we'll sit down and talk about the options and possibilities. Not to worry - it's very low-grade, but there is some cancer there and I think you need to deal with it."

I remember pulling off the road into a church and cemetery parking lot. And I just sat there and said, "Oh my God. I've got cancer," which was a dreaded word in our family. I had lost a brother-in-law at age 29 to cancer about 20 years ago, but I still held a frightening image of what he went through. He had stomach and bowel cancer and suffered terribly with lots of pain and after lots of operations.

Did you have a family history of prostate cancer?

It turned out, as I started checking, that I had a first cousin who had been detected with prostate cancer six months ahead of me and who was exactly six months older than me, living in Philadelphia. And I had one uncle who had an orchiectomy for his prostate cancer and is now in his late 80s and doing fine.

Anyway, my wife and I met with a urologist and urologic surgeon in the Department of Urology at UPMC Shadyside. He told me what the story was, the various treatment options. My urologist is a surgeon but until he talked to me about them, I didn't know there was such a thing as an oncologist or a radiologist. My immediate question to him was, which is the best treatment for where I am right now? He said, "In my opinion, it's surgery, get it out completely. It's the gold standard and we have the longest-term data for outcomes after surgery. Your tumor is confined within the capsule, you have a low Gleason score of 5. Because of your situation, the probability is very high that you're going to be cured with surgery." Then he said, "You don't have to rush into this. Think about it and let me know what you want to do."

Did that meeting decide you?

I wanted to do a little more research. So I started reading everything in sight, talked to everyone I could, got on the Internet. I'm a researcher and an engineer, so I'm used to doing scientific research. I also happen to be an information specialist. I do searches in technical and medical areas. It was just a coincidence that I needed to do this research for myself. So I felt very comfortable jumping online and going into MEDLINE, getting the relevant papers, going to the medical libraries and gathering information.

A particularly helpful book I read was Prostate & Cancer by Sheldon Marks, MD It has an excellent question and answer format and a chapter on specific questions you should ask your doctor, which I photocopied for my next appointment with my urologist. There were 25 to 30 questions and he sat with me for almost two hours and answered every question. After that meeting, I decided to go ahead with the surgery as soon as possible. I was operated on about four weeks later. He had experience in doing nerve-sparing surgery, so I had a nerve-sparing radical prostatectomy (a procedure in which the nerves controlling erections are not removed during surgery).

In retrospect, is there anything you would have done differently?

The only thing I would probably do differently is get a second opinion from an oncologist. I just wasn't familiar with that whole concept of what an oncologist was and what they do. They're not surgeons, they're not radiologists and they might give me a more even-handed opinion of the best treatment.

There was a prostate seed implant specialist in the hospital near where I worked in West Virginia. A lot of people had recommended that I talk to him and I didn't. I used their hospital library for research but I never made an appointment with him. That would have been my alternative. I probably should have, but there wasn't as much research on seed implantation back then as there is now. And I didn't want to have radiation and wait five years and see, come back and get checked to see whether it had worked or not.

But from everything I was reading, I still felt that, five years ago, there was more data on operations and my particular situation seemed to lean towards surgery. I was concerned about the side effects, but the other procedures had side effects also. My number one concern was cancer: I can live with side effects; I can't live with cancer. So surgery seemed the best choice for my situation and it turned out that it was. I've never regretted it.

How did you tolerate the surgery?

I was pleasantly surprised at the surgery. I had very few problems. I was in the hospital about five days, maybe six. The only problem I had was that I woke up one evening feeling nauseous and the nurse gave me a shot for it. The nausea went away and the next morning – when I was supposed to be released – I couldn't lift my head off the pillow. I was feeling very weak, exhausted. The doctors came in, checked my blood levels, which were okay and then discovered that the anti-nausea shot I had the night before also had a sedative in it. So I stayed an extra day and the next day I was fine. My recovery went very well. And about five weeks after surgery, I went back to work.

What about side effects from the surgery?

The nerve-sparing procedure worked, but it took about six months before I was able to have an erection. I'm not as fully functioning as I was before but still, I do have sex.

I had more problems with incontinence. Right after surgery, you're on a Foley catheter for weeks. And actually, the catheter was not that much of a problem. You get used to it. And as long as you empty it out regularly, you can get dressed, strap the leg bag to your leg under your pants and go out and do your regular business. I worried about it more than anything, but it wasn't bad. I was happy to get rid of it after three weeks or so, but no problem at all.

You know, you worry about every step along the way. You worry about the DRE, which is over in a few seconds. You worry about the biopsy and that turned out not to be a big deal at all. Then I worried about getting the catheter out. I thought, what do you have to do to get this thing out? It out turned out to be a very simple procedure, too. You go into the office, the doctor says lie down for a minute. He's talking to you and filling the catheter bag with something and emptying it out, then he's filling it up with something else. And then he says, "Okay, it's out." I said, "What?" He says, "Yeah, it's out." It took 30 seconds and I didn't feel a thing.

The doctor said, "When you stand up, you're probably going to leak a little." So he suggested I wear pads for a while and that as the sphincter gradually got stronger, I would leak less. He recommended Kegel exercises and I even went back and had special training in Kegel exercises with biofeedback. I did the exercises religiously, but I'm honestly not sure whether they made a difference. I got better and better over time, but whether it was because of the Kegels or just nature taking its course.

The incontinence did slowly go away, but never stopped completely. Even to this day, I still have a little bit of leakage when I'm trying to lift something, or when I exercise, or sometimes when I cough. I have been back to the urologist two or three times for collagen injections (to the neck of the bladder to reduce leakage). It seemed to work for about six months each time. And finally I felt it didn't help me enough and I didn't want any more injections. I've kept in touch with my urologist and we've discussed other options, including the use of a clamp and an experimental procedure in which a small muscle from the leg is transplanted into the sphincter. But I decided not to have that done because it was still a minor problem. If I knew I was going to go out and run, I'd just wear a pad. So to this day, unless I learn of a procedure that's sure to work, I'm just going to live with it. It's not that much of a problem.

So it's a little annoying thing that I have left over. But hey, it's been five years now and I'm alive and I do everything I did before.

After your diagnosis, did you make any lifestyle changes, for example, diet or exercise?

My diet had always been pretty good. I have slightly high blood pressure and I had high cholesterol, so I was always on a low-fat diet with very little in the way of red meat. I didn't do anything different that I can think of. And I was already exercising and anxious to get back to it. The only thing I couldn't do again was tennis, because I'd leak just a little too much. I did go back to running. I was in a 5K race in downtown Pittsburgh about two years after the operation. And I had to be a little careful about leaking, but still, I ran for a good hour or so. So there is life after cancer.

How has your family reacted to your experience?

I've had great support from my wife, daughter and my cousin who went through the same procedure. He had been detected and was operated on in the Philadelphia area. So as soon as I was diagnosed, I immediately got hold of him on the phone and he was my counselor over the next few months. "Okay, I'm going in for the biopsy, what is that?" "I'm going in for this, what is that?" He was six months ahead of me on everything that occurred. So that was a big help, the kind of help that made me think, every person who gets this should have a peer counselor, should have someone they can talk to.

Is that what got you involved in peer counseling?

It's one of the reasons I decided to really become active in starting a peer counseling group here. About a year after the surgery, I'd been reading about Us TOO= (the national prostate cancer support group) and there was an Us TOO Pittsburgh chapter that was beginning to form at the time. So I jumped in and helped form it. We just started meeting with some of the nurses here and my urologist. They were very receptive to the idea. And we got doctors lined up to talk about different treatments and issues at the meetings.

After getting the educational sessions together once a month, we decided to form the peer counseling group. I found a few other men who were interested in doing it, mainly surgical patients. And UPMC Cancer Centers said okay, but they wanted to have a training session for us, I think for good reason. They didn't want us giving medical advice or being a real advocate for one specific treatment. We could give out resource information and our own personal experiences, but not make any treatment recommendations. Half a dozen guys wanted to have the training and they've been doing it ever since.

Are you involved in any other prostate cancer awareness activities?

We're going to have another training session for new peer counselors. It was only done the one time. What happened was, we weren't getting enough calls to actually expand the peer counseling group. We were only getting one or two calls a month. We did a little brochure that the urologists and staff distributed, but it really didn't get promoted very well. So the brochure has been redesigned. And now we're talking about getting this information into the hands of everybody with prostate cancer who comes into the urologist's office. When patients first come into the office, there's staff they talk to, there's paperwork they have to fill out. So the staff will give them the US TOO! information as part of the application when they first come in. Everyone who has prostate cancer should be aware that there is a support group and can call.

The other thing we want to do is to expand to guys who have had all kinds of treatments: surgery, seed implantation, radiation, hormone therapy, everything. We want to expand that, so we're now planning another training session to include men with all kinds of clinical treatment. I mean, while some of my advice is generic, such as getting a second opinion and which are the best hospitals to go to, I can only talk from my experience of surgery.

What advice would you give to men who are newly diagnosed and looking for answers about treatment?

Prostate cancer is one of those cancers where there does not seem right now to be a preferred method. There are several that are competing and the doctors are probably going to come back to you and say, "Which one do you want to do?" It can be very confusing and disturbing. Most of the time you go to a doctor and are told, "This is what you need to do." And that's it. But prostate cancer is a little different. They're trying different things and each one has its pros and cons, particularly the secondary side effects of the procedures. Some men do not want to be laid up, do not want to have to worry about catheters and are going to take the easiest procedure out there. Other men like myself say, "I want the longest-term success rate in getting rid of cancer. I'll live with all the secondary effects," although most secondary effects can be taken care of in time.

In peer counseling, when people ask how to get more information, I recommend the Internet. The Patient/Family Education Center has wonderful tapes, videos, books, references and clinical trial information. Or go to your own library. Go to the bookstore. Go to the medical libraries It used to be that you couldn't walk into a medical library, a hospital library; you weren't allowed if you were a patient. Now you can just walk in, do a medical search and all the references are right there.

What tips would you give on how to do an effective Internet search?

Start by searching for the term "prostate cancer" - in quotations, so you're not getting hits for "prostate" and "cancer" separately. There are well over 100 websites out there dealing with prostate cancer, but they are very variable in content. They range from very personal accounts with a couple of links, to very sophisticated sites. And in some cases, sites are very biased. They might be run by a pharmaceutical company or by a hospital specializing in a particular procedure. And as you get deeper into your questions, you may find that a site is promoting a particular medication or treatment as the only option for your condition. So you have to determine whether you're getting unbiased information or a sales pitch.

The other question in your search is, do you want a patient's viewpoint or a doctor's viewpoint? A doctor is going to tell you which treatments are the best; a patient is going to tell you what a test or treatment feels like, what the secondary side effects are and what it's like to live with them.

Do you have any suggestions about how to find the best doctor?

You ask lots of questions. You narrow it down from recommendations, from everything you read. Are they board-certified? Which hospital are they associated with? How much experience do they have? And then you go in and interview them. You go in with a whole bunch of questions and see how well the doctor answers them. Some of those questions should be about the doctor's training. Where were they trained?

And you need to ask about their experience. You want a doctor with a lot of experience in your particular diagnosis and treatment. If it's a urologist, then there are urologists who focus specifically on treating prostate cancer. How many operations have they performed each year? A good number is 50 to 100 operations per year. The more experience they have, the better it is, whether it's surgery, or radiation, or whatever. They've just dealt with more situations and have more experience with patients and how they've reacted to their treatment.

You want to know how successful the procedure's been, too. Ask your doctor if you can talk to some of their patients. If they're good, they're going to have no problem having you talk to their patients. If they're hesitant and don't answer your questions, I would certainly quickly change doctors and go to someone else. Because there are some doctors out there who aren't answering questions and aren't spending the time. And part of the reason is, they don't have a lot of experience, quite honestly.

Whether you live in a small community or near a large city, get a second or third opinion, but I suggest looking at one of the major cancer centers, like UPMC. Check the issue of U.S. News & World Report about the America's best hospitals, pick the ones in your region and talk to the doctors there and just see if you get different answers and a different level of experience. You'll speak to oncologists, not just the radiologist or just the surgeon. You'll get a range of information on all the choices, so that you feel comfortable with the treatment you end up choosing.

And don't be afraid to ask questions. Doctors are not gods; they're just very talented people. And if they don't answer you or you're not satisfied with the answer, don't be afraid to walk away and try someone else. Remember, this is your life and you've got to be satisfied that you've picked the right person for you.

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

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