Prostate Cancer: Personal Experiences

by David Rozum



Disclaimer

This site presents a very frank discussion of my bout with prostate cancer. Medical and physiological terms that are considered embarrassing in polite company are liberally used in the text that follows.

My opinions are just as liberally sprinkled in, although I often indicate them with an IMHO (i.e. "in my humble opinion"). This document represents only the author's opinion.

Please note that I am not a medical professional. I'm not even a medical amateur, for that matter. All medical descriptions represent only my understanding of the facts. Questions regarding the reader's personal issues need to be answered by a qualified professional. If you have or believe you have prostate cancer, you need to talk to a physician.

Greetings

I'm one of the fortunate ones. I was looking for it; my father had it. Had I not been looking, I probably would have been symptom-free for another five or ten years. However, I wouldn't have been cancer-free during that time.

This monograph describes my experience with prostate cancer. I am writing to give others with prostate cancer a glimpse of the process they are now starting. This document is also intended to help those who are curious about prostate cancer learn what we who have it experience. I have spent a lot of time adding links to other sites as a means of locating reading to deepen your understanding. Please use them.

To those who currently have prostate cancer, or are nervously looking for it, I say this: My Brother, you will survive this. You have the strength. Your circle of family and friends won't understand all your issues, but they will understand enough to help. Feel free to e-mail me if you wish to ask anything.

Testing

There are two relatively painless tests performed to test for prostate cancer, the digital rectal exam (DRE) and the PSA blood test. The digital (digit, as in finger) exam never revealed any significant abnormality to my doctors. "Slightly enlarged" was the phrase I heard describing my prostate from all that checked.

When I first had my PSA test done, it returned with a result of 4.1 (ng/ml). The problem with the PSA test is that cancer is only one of the conditions causing it to elevate. What is considered normal varies with the age of the individual. At the time I was 47, so normal was considered to be 2.5; I was elevated. A transrectal biopsy was ordered.

A transrectal biopsy is not fun. The device is a lot bigger than a "digit". A word of warning from Robin Williams: during the exam, don't moan another doctor's name. :-)    It is with this exam that actual samples of prostate tissue are retrieved and analyzed. During my first biopsy, eight samples were drawn. All returned negative for cancer. I didn't really believe in the PSA test anyway (especially since my prostate "felt" fine), so I thought everything was okay.

After a year, my PSA was measured again. 3.8, lower than before, so no biopsy was required.

In 2002, however, my PSA test result was 6.3 when measured in August. Of course, a 50% increase in an already elevated level is cause for concern. Another biopsy was ordered. 15 samples were taken, with cancer found in 8% of them. It was categorized as T1c. I was told that it had been found only on the right side of the prostate, and that a tumor hadn't yet developed. I had prostate cancer, but it had been caught early.

The Decision

The diagnosis had been delivered by my Urologist. With a diagnosis this serious, one is expected to get a second opinion, so I did. My parents recommended I talk to the Oncologist who had worked on my father.

I expected the second opinion to be a review of the diagnosis. However, the reason for the second opinion was to explore treatment options. With prostate cancer there are several. At my time (2002) and place (Phoenix), I had four options: surgery to remove the prostate, internal radiation like my father had, external radiation and hormone therapy. There are new treatments being developed, for example a laparoscopic surgical approach. However, they weren't available to me.

The problem was, it was tiring just listening to these bright sincere men explain in detail what their specialized treatment was, how it would be performed on me, what the risks were, and what the side effects could be. I needed significant mental discipline to focus on the information being given to me. After all, the decision is entirely one's own.

The stress of listening to all this information, along with the very early stage of the disease caused me to seriously consider a "watchful waiting" approach. I wasn't sure if I needed to rush. None of the options sounded good to me, no "sure things". However, since cancer is unpredictable and fatal, I decided to go ahead and treat it.

I weighed the following in selecting a treatment: probability that the cancer would be completely destroyed, the types of probable side effects, how quickly I could return to "normal" following the treatment, and types of follow-up treatment available in the event something went wrong. The goal was to reconcile those items with my life's current circumstances.

I elected surgery.

The most difficult part I had about this stage in the process, was telling other people while still coming to grips with the issue myself. My friends and family frequently didn't know what to say, and neither did I. I finally came up with stating that I had some serious news. I had cancer. Then I would pause for their reaction and go from there. On one occasion, the person thought I was joking! Several people responded by telling me their family's cancer horror stories. I'd thank them and let it go. The extreme variety of responses I received caused me to view this phase as performance art. However, I would always try to leave the conversation on a positive note - and rightfully so! It had been caught very early. I had an excellent prognosis.

Surgery

My reading had shown that the surgery was major and the recovery lengthy. To prepare for the surgery, I concentrated on getting as fit as possible in the brief time available (diagnosed Sept. 18, surgery Nov. 6). I worked on the whole body, weight machines, treadmills, hiking. I endorse this strategy, but I highly recommend speaking with your doctor first. I wasn't starting at zero, I was just increasing the frequency of my existing work outs.

I worked until the day before surgery. There really wasn't any reason not to. However, the prep work for this surgery begins the day before, so that day was a half work day. The prep work consisted of clearing the entire intestinal track by drinking a gallon of a substance named "Golytely". Expect a week before your stool is firm again!

I was scheduled for 8:30am surgery. There wasn't much to it; I went in, got knocked out, 2.5 hours later I awoke. In my case, there was a problem getting my heart rate back up above 40. It was surreal being conscious at that low of heartbeat, talking with an obviously nervous recovery nurse about the issue, and feeling so detached. The surgeon solved the problem with epinephrine.

The "post-op" world consisted of trying to cough, using devices to force deep breathing, and walking with staples, drains, and a Foley catheter in me. All this and a drugged stupor too! I could have gone home the second day, but, alas, I developed a lung infection so I had to stay two nights at the hospital. However, because of the extra day there, the drains were removed before I left.

My surgery was a retropubic radical prostatectomy, so I left the hospital with a five inch scar healing on my abdomen. However, I received the final pathology report before I left. The cancer had been at stage T2b,N0,M0,G3, far worse than had been diagnosed. The reason for the optimistic original diagnosis was that all the testing had been done on the posterior side of the prostate, the side facing the rectum. In my case, all the disease had occurred on the anterior (front) side. However, it hadn't spread outside the prostate, so all of the cancer most likely was removed.

Recovery

It was a great relief to return home. However, a Foley catheter and staples (instead of stitches) certainly cramp one's style. In my case, the Foley remained in for slightly over two weeks, the staples for one week. One of the issues with the surgical approach is that it is traumatic to the bladder. Therefore, the initial recovery period is spent regaining bladder function in addition to recovering one's strength.

Walking is the exercise of choice for recovering. It not only strengthens one, but it also helps by preventing blood clots and keeping the lungs clear. It sure beats laying around and coughing! While I had the staples in, I limited myself to walking inside the house and limited forays outside. After the staples were removed, I began walking outside in earnest.

The problem with walking with a Foley is one of leakage. Although a tube is in one's bladder, I found that a small but annoying amount still leaked out from the penis while walking. The problem got worse as the walking distance increased. I tried taping paper towels around the Foley tube in absorb the urine, but eventually toward the end, I returned home with the paper towel soaked. I guess it's kind of funny in retrospect.

However, the worse part of being on a Foley was moving one's bowels. In the process, the bladder would also try to expel the unexpellable Foley. Spasms occurred. I strongly recommend eating some Fig Newtons or drinking Metamucil during this period, to keep the bowel movements regular.

Finally, however, the Foley was removed (uncomfortable, but not terribly so). The Foley period ended, and the Kegel exercise period began.

My Foley was removed on a Thursday afternoon. It was Saturday before any semblance of bladder control began to appear. All the jokes I told about Depends have returned to haunt me. I am now familiar with the entire product line.

There is zero bladder control when the Foley is removed. The Kegel exercises are what bring control back. At first the Kegel's just firmed up the muscles so that I wasn't leaking all the time. However, for me at least, at first the "urge to urinate feeling" didn't return either. I would go to the bathroom when I noticed that I was leaking more than usual, and usually the time was right.

The control returns gradually. The primary method of checking this is noticing the amount of leaking in the various types of pads one wears during this process. The progression to a lighter weight (thinner) pad is a major celebration. One day I felt "the urge to go" and couldn't stop smiling.

My Urologist gave permission for me to return to work on a half time basis on Dec. 2, nearly a month after the surgery. I was pleased to return. However, I underestimated the effect that the surgery and the month off would have on me. After work, I would return home and sleep for 2 hours. I was exhausted during the first weekend following my return.

I'm a white collar worker, so there isn't a significant physical aspect to my job. However, my approach the physical aspect of the job was subtly changed because of the bladder recovery process. I had to plan ahead to ensure there was access to restrooms when traveling to meetings. At this point, difficulty in control was more pronounced when standing and walking, when traveling by car, or when laughing or coughing. I kept extra pads in my desk and in my briefcase. They rarely were used, but they were used.

The difficulty of returning to the intellectual aspects of the job took me by surprise. For the first two weeks, I had difficulty concentrating and memorizing. In addition, I was a month behind everyone and didn't know the correlations between the different aspects of the various projects. It was significantly more difficult than returning from a vacation. It was interesting that I didn't see this effect mentioned in the many articles about coping with cancer. Maybe I'm just weak.

After two weeks, I was allowed to return to full time work. During the first week, I needed a day away from the office after putting in three days. I was exhausted and I discovered a little blood in my urine on Wednesday. I still worked using e-mail and the telephone, but at least I could lie down. It helped a lot.

Everything was slowly coming back. Stamina, bladder control, strength were all returning. I began hiking up mountain trains during the 6th week after surgery. It was great to be back in the desert again. Certain aspects of the bladder control, such as stream pressure, seem changed forever, but I believe that I'll be back to, say, 90 to 95 percent of where I was prior to the surgery. However, now that the primary physiological effects were sorting themselves out, I started to pay attention to the issue of impotence.

Two months following the surgery, I took another PSA test. This is a pass/fail test. If the PSA level is undetectable (<0.1 ng/ml), then the cancer was indeed localized and most (hopefully all) was removed. If there is a detectable PSA level, then additional work will be required to determine why.

I received the great news that my PSA was undetectable!

Around mid-January I finally began feeling that I was mentally "back in the game" again; two and a half months after the surgery. Bladder control was pretty good, although the weak stream pressure is sometimes embarrassing. It appears that I've hit a plateau there, but I hope that I continue to improve. According to my reading and to my doctor, full recovery can take up to 18 months.

By Memorial Day things were close to normal. I've realized that certain things will never return to 100%. The problem with low stream pressure is that one never knows exactly which direction the stream will go; it's often the wrong way. However, my exercising is progressing well. I'm in better shape now than prior to the operation. I've kept the weight off (I've lost about 15 pounds).

So, am I cured? Because it grows so slowly, I was told that if there is no recurrence in ten years, then I'll be considered cured. Ten years! So my attitude is that, at this point, I'm cured enough.

Thanks

I've been continually amazed that my wife has put up with me for all these years. However, her previous skills in dealing with me pale in comparison to what she went through during those months. To my wife I say, "Thank you for your strength, patience and love when I needed it most." Quite literally, I couldn't have made it without her.

You find who your friends are during an event of this magnitude. To those who gave their quiet encouragements, who in small ways showed their concern, I wish to convey how important you were to my recovery. I'll never forget your kindness. Thank you.

Lessons Learned

A summary of lessons I picked up from my prostate cancer experience (IMHO).

  • "Medicine isn't a science, it's a practice." Different medical professionals will reach different conclusions based on their experience, i.e., based on the amount of practice they have. It is important to ensure, as I did, that you have a very experienced (>100 surgeries) physician. You want someone with the experience to calmly react to the unexpected. It's your life, so if you're uncomfortable with your physician, interview others. Caveat emptor.
  • Because the posterior of the prostate is all that's examined with the DRE and the biopsy, the PSA test is the most revealing. Unfortunately, the PSA test isn't definitive. However, if you haven't had your PSA test, get it tested now. If you have PSA results that keep getting larger, talk to a Urologist; it's the rate of change in the PSA results that's important.
  • Although I'm glad I focused on fitness prior to the operation, I wish I had done Kegel exercises prior to surgery. Maybe it wouldn't have helped, but who knows?
  • The support I received from my family and friends had a larger effect than I thought it would prior to the surgery. Don't underestimate the psychological effects of this procedure.
  • I'm still shaken by the change in diagnosis. There's a big difference between level 1 and level 2 cancers. Medical diagnosis has a lot of limitations due to the restrictions placed by trying to look inside living bodies. I'm not sure what lesson to learn, except to be skeptical when confronted with a mix of positive and negative data.

Resources

Rapid learning is called for when diagnosed with any cancer. Here's some sources that helped me:

Prostate & Cancer by Sheldon Marks - An excellent book. This is the place to start.

Web sites are weird. Most are either incomplete, or appear to be strangely upbeat, or mystical about the disease and the treatments. These are some I like. Don't forget to search them for more information.

  • The National Institutes of Health (NIH) is a solid site (no ads!).
  • The American Cancer Society is okay, but it lacks technical depth in my opinion. However, it covers psychological and social effects well.
  • WebMD has a Prostate Condition Center that has a strange mix (IMHO) of articles. But searching on "prostate cancer" there yields some very good articles.
  • The National Cancer Institute is a great site. Because it's designed for both patients and professionals, it can take some searching NCI is part of the NIH.
  • Phoenix5, by Robert Young, is a well-organized site for men and their spouses. It contains cancer, treatment and recovery information, first person stories, etc. It helps you learn from others' experiences. Nice site. I wish I'd found it before late December.

Last revised 12 Jul 2003. Return to Rozum.net.


Copyright © 2002, 2003 David Rozum, All Rights Reserved