A Prostate Cancer Survivor's Story

One doesn't really think that at age 59, your world will tumble upside down on top of you when you are diagnosed with cancer.

My story starts on December 29th, 2003 when I visited my family doctor for a routine physical exam. An older friend, Ken, was hounding me to go to the doctor to get my prostate checked. I had a PSA (Prostate Specific Antigen) blood test done the same day. About a week later, I got a call from Dr. Bill to come into his office and discuss the results of my test. On January 15th, 2004 I saw Bill to find out that my PSA levels were elevated at a reading of 6.7, compared to my last reading of 4 done in 1998. My prostate felt normal, but he wanted me to see a Urologist in Victoria, a drive of 45 minutes from my home. He ordered a second more extensive PSA test that same day. On February 20th I had my first appointment with Dr. Gary Steinhoff, a medical doctor specializing in the field of Urology. He checked out my prostate to find it was "normal". We discussed the fact that an elevated PSA level may mean things other than cancer, but suggested I have a biopsy just to be sure. He scheduled it for March 4th at the Victoria General Hospital. At this point in time I felt I was going through some medical procedure just to show the doctors that I had some kind of infection that was affecting my blood work. I had no symptoms or pain indicating anything was wrong. My biggest concern, at this point, was giving myself an enema before the biopsy procedure. I had never been constipated in my life and I read the instructions two or three times to get it straight what I had to do. I took the bull by the horns for lack of better words and proceeded to give myself a fleet enema. Let me assure you it was no big thing. I had just moved my bowels, as was my mother's term, so I wasn't in for a rushing tide or anything like that. Quite a relief.

March 4th finally came along. I drove myself to the hospital for this pain in the butt test which I felt was probably a waste of time. At about 12 noon, I was lying on my side with Dr. Gary standing behind me with an instrument in his hand saying, "This won't hurt". I felt my anal sphincter enlarge as the tip of this instrument was carefully and methodically inserted into an opening where my maker did not intend it to go. I saw an image appear on the TV screen in front of me. Gary described what we were seeing was my prostate gland, seminal vesicles and other private parts. I realized that this instrument, humongous as it felt inside of me was only about 3/4" diameter, yet it consisted of a head for ultra sound, a tube for pressurized gas to deaden the nerves for pain inside my rectum. I was about to find out that this instrument also contained a spring loaded needle that would take samples of my prostate. As he was explaining the next step, I felt the pressure of the gas do its thing. Gary said he was going to take some samples now, about six of them about an inch long. I heard those dreaded words again, "This won't hurt". Gary was right, this time, I didn't feel any discomfort, just heard the snap of a spring release and saw a tiny white line come and go on the screen. While Gary was amusing himself, shooting my prostate full of holes, I realized that he is shooting a needle through my dirty nasty rectum into my body cavity into another organ. "Isn't there a good possibility for infection with this procedure?" I asked. That's why you were given the antibiotics the day before, of and after this procedure. Only about 1% of men get an infection doing this. Somehow that wasn't too comforting. With the 10 or 15 minute procedure over, they helped me down off the table and informed me that they should have the results back in a week of so. Gary promised me he would call me on the phone to discuss them with me.

The week passed by quite quickly, I wasn't too concerned. I knew that it was probably some silly thing that I could take a pill for and move on. Wrong! Dr. Steinhoff called me on March 10th at 9:22 in the morning, to inform me that I had prostate cancer. He told me that my pathology report from the lab indicated that I had a clinical stage T1C and a Gleason Score of 8.This was confirmed by two pathologists. He went on to explain that my cancer was aggressive, but it was confined to the prostate gland. He told me that if this was left for 2 years it would not be curable. I had only two choices for treatment, either surgery to remove the entire prostate or radiation to kill the cancer cells before it spreads and leaves the gland. Radiation seed implants were not an option in my case since the cancer was too aggressive. He wanted me to find out all I could about this dreaded disease and call him back in about 3 or 4 weeks. Before ending the call he suggested I contact the Prostate center in Victoria and read the book by Dr. Patrick Walsh, Surviving Prostate Cancer (Warner Books, 2001). Being handy with my computer and familiar with the internet, I set off to explore everything I could about the prostate and how cancer affects it. I wanted to find out mainly the differences in treatment between the removal of the prostate through surgery and the treatment of prostate cancer with radiation. It didn't take me long to find out that I had to inform my family. I had no choice in the matter of informing my two brothers who now had a family history of the disease and just doubled their chances of getting the same thing that I was living with. It took me a little while to compose myself after thinking of my younger brother Chris, who just passed away four months prior with lung cancer. How could I tell my family I had prostate cancer after what they had just gone through with my brother? I went back to the computer and studied some more. I found out that prostate cancer and lung cancer are two different diseases. Prostate moves slowly, lung moves quickly. Prostate cancer is curable if discovered early enough and treated while still confined to the gland. I called my brother, Dan, the webmaster for our website, since I knew he would be home working on his computer. Dan is 5 years younger than myself putting him at age 54. He was, of course, surprised by my news and familiar with the prostate and PSA tests. He would inform his doctor as I requested, to update his medical history, namely prostate cancer in the family. Mark, my youngest brother, nine years my junior, was working and wouldn't be home for hours. I started to call my daughters and inform them of the difference between the disease I had and the one that took their Uncle Chris. I told them I have a decision to make, surgery or radiation and need information to help me be informed. The news went through my extended family like a prairie wildfire. I was getting information from all fronts. My cousin called me from Edmonton with information and news of her fight with breast cancer. My brother-in-law from Lake Cowichan called with information on his personal struggle with prostate cancer for the past two years and the horrors he went through with hormone therapy and radiation. I was learning all about prostate cancer and the results of different treatments.

In the midst of my learning all about prostate cancer, I had appointments for an xray and bonescan to see if the disease had progressed past the wall of the prostate. My wife, Frances, and I went down to Victoria on March 22nd, to talk to someone at the Prostate center. I was very apprehensive about going there, not knowing if I should bring my wife, if that would upset the guys in there. We were met by a female volunteer, retired RN, Ellie, who spent most of her career in the urology field. She took us to a small room where she sat down in front of us and told us about the prostate, the surgical procedure, a bit about radiation. We asked some questions, she was very knowledgeable. She informed us that cancer is not a communicable disease and cannot be transmitted from one to another. Cancer is an abnormal cell specific to the body it has mutated in and cannot be transferred to another body and survive. She praised Dr. Steinhoff for his work as a surgeon and his contribution to our community with his work at the Prostate center. "If you had to get prostate cancer you couldn't have picked a better place or a better doctor", she told us. Thanks, Ellie.

My three weeks were up and I had to make a decision, surgery or radiation. I was leaning toward surgery. My family doctor, Bill, wanted to see me again to see how I was doing with all this news and info. We discussed the surgery, he told me he would pick surgery if he were in my place. I thanked him for his time and expressed Dr. Steinhoff's admiration for his follow-up with my PSA test and passing it along to a specialist who indeed confirmed that cancer was the reason for the elevated reading. I noticed a slight emotion in the tearing in his eyes. He told me he had three patients at the time with prostate cancer. Thanks, Bill.

I saw Dr. Steinhoff on April 2 to discuss with him my decision to have the surgery or radiation. He informed me that the bonescan was negative. I told him that I discovered that the side effects of both procedures are incontinence and impotence but that with surgery the chance of cancer not recurring after 10 years was much better than for radiation. He agreed with my findings. He mentioned that he just got back from a European Medical Conference where they discussed the advantage or lack thereof of hormone therapy for surgery patients. He came out of that conference with the feeling that to put a surgery patient under a hormone treatment schedule for 12 to 14 months was not that beneficial and suggested I go directly to surgery. He said he didn't like to do surgery within two months after the biopsy, since the prostate is stuck to the rectum from the needle punctures between the two, making separation more of a chore. He had a date for the surgery available on May 3rd if I wanted. He informed me that my cancer was a nasty sort and that his main concern is getting it all, which means taking the nerves for sexual function, if needed. He said I have a 50/50 chance of this happening. I had read in the books that if sexual function is lost there are other means to arrive at this. The feeling won't be lost, just the ability to form an erection. I agreed, not having much of a choice. He said before the actual removal of the prostate he will remove some samples from the lymph nodes to send to the lab for dissection and get the results back within minutes. I left his office and talked to his nurse, Sandra, who gave me a form stating that I was booked for Radical Retropubic Prostatectomy at Royal Jubilee Hospital in Victoria, British Columbia, Canada at 7:45 am on May 3, 2004 with an expected length of stay of 5 days. The form included information on what not to eat or drink in the weeks and hours leading up to the day, including advice on medications that may thin my blood. It also informed me to give myself a fleet enema the evening before the surgery. Surgery was a go for May 3rd.

I live in a beautiful part of the world with warm relations with our neighbours to the South, but our politics in BC sometimes interfere with the day to day lives of its inhabitants. About a week before surgery day, our province was thrust into a labour dispute between the government and the health care workers. The dispute escalated into a strike with pickets at the hospitals throughout Victoria and the rest of the province. Nobody knew what would happen, including my wife and I. Friday morning came along, surgery day was Monday. The phone rang, it was the hospital, phoning me to come down today to do a pre-admission before the surgery. I drove down there to be inundated with forms for this, forms for that. A nurse then took me aside into a private little room to discuss what would happen to me in a few days. She showed me a Foley Catheter, which would be inserted up my penis to end in the bladder. A little balloon which is filled with water would be inflated to hold the thing up there for about 3 weeks, giving the urethra a chance to heal at the bladder. She then reminded me to give myself an enema and not to take any food or water at the required times before the operation. She also told me to wash myself the night prior and the morning of the surgery with a special soap and sponge. I could buy it in the gift shop if it is open. She apologized for the disturbance outside. I received no hassle at all from the pickets when I told them I had an appointment inside. I'm so thankful that my surgery was still a go for Monday. I noticed, though, that the halls of the hospital were vacant. Staff was at a minimum. I stopped by the small gift shop, run by ladies who are members of the Hospital Auxiliary. I bought my soap, along with instructions and off I went. I was back on track, thinking about this enema thing. We prepared for the day of surgery coming up very soon. My middle daughter, Jacqui, came over to spend a couple of days with us and supported Frances through this. Thanks, Jacqui.

Monday morning I arrived at the hospital with Frances and Jacqui in tow. While waiting at the front desk, in walked Dr. Steinhoff, he smiled at me and continued on his way. I don't think he recognized me. He does ten of these operations a week, so why should he. It seemed like the nurses were waiting for me and got me all fixed up with gown and silly little slippers and robe to cover up my bare butt. I was moved to a waiting room, in my own private bed, close to the OR. Pills were given me, an IV nurse did her thing, a guy with an electric shaver came by and asked me if I wanted to do this myself or he could do it. I opted for the DIY approach, ouch! Frances and Jacqui came by to wish me well and tell me I'm going to be alright. Then they wheeled me off into a different room, lined up next to other patients, men and women waiting their fate at the hands of a surgeon. Dr. Steinhoff came by, went over the possibility of him having to take out the nerves next to the prostate. I felt I couldn't get up and leave at this point, so reluctantly agreed. Within moments I was in the Operating Room with assorted nurses in there clanging about with pans and instruments. A nurse was holding my shoulder as the Anesthesiologist inserted a tiny catheter into my spinal fluid to control the pain during and after surgery. I laid down and was out like a light. About 2 1/2 hours later, I woke up in the recovery room. Dr. Steinhoff came by immediately and told me he couldn't get hold of my wife. I said call her on her cell phone and rattled off the number, like it was just gushing from my mouth. A day later, I couldn't remember her number. I arrived in what was to be my room for the next five days. I was sharing a room with a cancer patient that had his Adams apple removed. He was hooked to pumps and noisy machines of every description. Frances and Jacqui met me in there after awhile. I experienced no pain at all, just the discomfort of the Foley catheter and the constant activity in a hospital ward. I was allowed to rest the first day. Day two came along and nurses were getting me out of bed and had me walking on the spot. One on each side of me, my head was spinning from the pain medications. Food was clear fluids for days two and three with transition foods for the rest of my stay. On Day four the IV was removed in the morning with the epidural later on that evening. About 20 minutes after the epidural was removed, I felt an intense pain in my incision area. I felt someone was holding a blow torch on my incision, the nurse gave me a pain pill and it slowly subsided. That was the only pain I felt up to that point. That epidural was something else.

I began to get accustomed to the pain of the incision, everyday it got a bit better. I was discharged on the fifth day, as was planned. The nurses were concerned that I didn't have my first bowel movement yet, but stopped the discussion when Dr. Steinhoff gave his permission to go home. The nurse fixed me up for the hour drive home. She let me keep the surgical stockings to prevent blood clots from forming. She re-dressed my wound and gave me a couple of leg bags and one large bag for the catheter. I'm going home.

I arrived home to find a bed set up in the computer room downstairs with pictures of my eight grandkids lining the window blinds. I switched my full (500 cc.) leg bag for the overnight bag (2000cc.) I felt tired so called it a night. Frances came in at about 4 am to give me my pain pills (Tylenol 3). I was experiencing a bit of nausea and noticed it was hard to swallow. My first born daughter, Sabrina, came over to "nurse" me while Frances was at work. Her three kids accompanied her. Noah, 9 years old, Enoch, 8 and Adoniah, a real cutie, was 6. Sabrina home schools her kids, so their life wasn't disrupted, too, much. At about 2 pm everyday, me and my catheter and bag, along with Sabrina and her kids, walked to the mailboxes about 2 blocks down the road. One day I showed the kids a "short cut" through the bush and came out about 5 blocks from our house. We continued the exercise. When I arrived home I realized that some of the urine leaked out the side of the catheter, I wet my pants. I didn't say anything, just went and cleaned myself up and changed. Too much exercise, too quickly, I felt. I was trying to have my first bowel movement since the surgery. I noticed that my brain figured I was normal and forgot the fact that I had a catheter. I couldn't seem to move my bowels unless I urinate at the same time. I got an intense pain from my bladder. All I could do was to squeeze, thanks to the Kegel exercises before surgery, my sphincter muscles were strong. I literally had to concentrate on what I was doing to relieve the pressure on the bladder and at the same time try to go through the process of having a bowel movement. The body is an amazing piece of work. I overcame this problem. I noticed a few more times when I had a pain in my bladder the only relief was when I squeezed my muscles as in the Kegel exercise. I strongly recommend doing the Kegel exercises as suggested by the doctor. You need these later on when the catheter is removed. I finally had success on Day 10 from my surgery. What a relief. I have a great deal of respect for what women go through in giving birth to a baby. I felt a round blob of poo about 2" in diameter at my butt, it felt like sitting on a babies head. I didn't have the strength to pass it, and knew I should not strain. I finally had to do something and held my incision and mustered all my strength for a final discharge. Oh, my rear end was sore for a few days, but no more problems like that. I then knew why the nurses put such importance in having a BM before leaving the hospital.

Sabrina continued to nurse me, cook my meals and take a tremendous load off Frances, who was back at work full time. I watched as her kids looked up to her for an explanation of the studies they were doing that day. I even got involved in playing a trivia/pictionary/scrabble/charades board game that Sabrina had made for her kids to aid them in their learning. I lost, Adoniah won. Enoch refused to play Shania Twain so lost his turn. I decided to enrol in Sabrina's home school the next morning, so I could be as well educated as my Grandkids. Thanks, Sabrina.

We were having breakfast one morning and I still had my large bag hooked to the catheter with its accompanying longer hose. When getting up from the table, I stepped on the hose and gave my catheter a slight tug. I noticed some blood mixed with the urine for the following day. From then on, after getting up from bed, I switched right away to my walking bag, strapped to my leg. That wasn't going to happen again.

I noticed my strength was improving, my pain was diminishing, I was looking forward to the day of the removal of my catheter.

May 17th arrived and the day I would get my staples removed. Now for those not familiar with these little gems they look exactly like paper staples about 1/4" across and very thin. My incision was still sensitive to the touch but was healing very well. In fact Nurse Sandra remarked how well my scar looked already. She proceeded to remove the little staples one at a time, using a small scissor looking tool, until all 22 were removed. No problem, no pain, a relief that I won't get my shirt caught on the staples. While at the doctors office, I wanted to make an appointment with the nurse to remove the catheter. "The Catheter comes out in three weeks after surgery", I was told. "Well, next Monday Is the 24th of May", the Queen's birthday in Canada and other countries of the British Commonwealth, I retorted. So we agreed on removing the dreaded tube on the following Thursday, four days prior to the 3 week deadline. Great! I went home happy.

Catheter removal Day finally came. Frances drove me to the doctors office, I still wasn't allowed to drive.

Now I had prepared myself for this with an incontinence pad which I had in my pocket. I dropped my pants and the nurse deflated the little balloon which kept the tube up in the bladder. She slowly pulled the tube down. I felt no pain, as such, just a strange sensation of the tube being withdrawn from my penis. With the end of the tube coming out, I started to drip on the floor and on my pants at my ankles. I had no control at all. I grabbed my penis and held the fluid inside, leaving one hand loose to try and get my pad out of my pocket, way down there around my ankles. The nurse immediately reached for her stock of pads and gave me one which I put in place to absorb the drips. She then started to wipe up the few drops on the floor, ignoring the drops on my pants. Frances grabbed a paper towel and gave it to me to wipe my pants. From this lesson, my advice to you, if going through this same procedure, is to have a tissue or paper towel handy to contain any drips. Also have the pad unwrapped and installed on your underpants, ready to pull them back in place. I figured I may not even need these pads so lets find out first. Trust me, in my case, I had absolutely no control over my bladder at this point in time, your bladder is continually draining urine, so get ready for the inevitable. Sandra, the nurse, asked me to call her in 10 days to report on my incontinence. Ten days later, after doing Kegel exercises every time I could think of, I called to report my bladder is working fine, and I only drip when getting up or walking a good distance. "Keep doing the Kegels", she said.

My next stage was waiting for the pathology report from Dr. Steinhoff. He said in the hospital that it should be available about ten days after surgery and he would phone me. I asked Sandra if this report was back yet. Dr. Steinhoff had a bunch of reports on his desk and was filling in for other doctors who went on vacation and is behind, he will call me as soon as he gets to it. I was given a form to give to the medical lab, near my residence, for them to do a PSA blood test starting at six weeks from surgery and continuing every 3 months for two years, then every six months for five years then every year after that. The next day, I got a call from Gary informing me that the cancer was indeed confined to the prostate and he considered me cured. I asked him if he was able to spare the nerves for sexual function. "Yes", he told me,"You'll be alright". He will call me when he gets the results from the PSA test. Great news! This is why I opted for the surgery - a full cure. Thanks, Dr. Steinhoff. He called me after the first six week PSA test. My PSA was down to 0.007 ng/mL, showing that there was no residual cancer cells lurking about. And so it goes.

Thanks Dr. Gary Steinhoff for your skills, for the surgical team, the hospital nurses and Sandra, for my family doctor, Bill, for having the perseverance to follow up on a slightly elevated PSA result, for my wife, Frances for her love, care and understanding, for Jacqui for leaving her family to support me and Mom on surgery day, for Mario, Jacqui's husband who looked after their children so Jacqui could be with us, for Sabrina for her care, support and good cooking, for Curtis, Sabrina's husband who sacrificed a week without his family for me, for Ron, my brother-in-law for sharing his story of prostate survival with me, for my family for their love, caring and support, for friends who shared their stories, sent cards, emails and encouragement and hounding from Ken for me to get a PSA test done, for my Lord and Saviour, Jesus Christ who I found comfort in talking to during these difficult times.

My story won't end for years, probably not until I'm in my 80s when almost 100% of my male friends will be diagnosed with prostate cancer. I'll simply tell them, "Oh, I had that taken out when I was a young man, close to my 60s. There was a test back then that saved my life. It was called the PSA test. Remember that?"

Addition of July 30, 2011: New hope for cancer patients! (see)

Dave