Patient Experiences
The Prostate Cancer Experience
By Trevor Mackay
May 2010
The Education:
For the last five years I’ve been under the care of a doctor that believes your blood contains many indicators that help to determine your overall health. I have been tested by a simple blood test twice a year since 2006. On December 1st 2009, I had one of these tests and the results showed that my PSA levels had gone up since the previous test. Understand that the level indicated a rise, but were not suggestive of a concerning range. He advised that I have this checked further by a local urologist, to make sure it wasn’t an issue. This all took place around the time of my birthday and during the Christmas holiday season (additionally a very busy time of year for our business). I waited until January 19th 2010 to make the follow-up appointment.
I didn’t tell anyone of my concerns because I was certain I was fine and this appointment was just procedural. The first thing the urologist did was draw blood and performs a D.R.E. (Digital Rectal Exam). The DRE is not painful, but not pleasant either. The doctor said the left side of the prostate felt a little hard and since the PSA had gone up a little bit more since December that I should have a biopsy of the prostate gland, as this would more accurately determine what was going on. OK no big deal I thought, they simply take a small tissue sample, tests it and all would be done. The idea that it was simple was a mistake. The procedure takes about 30 minutes and can be done with a local anesthetic (which I don’t recommend) or you can be sedated for the procedure. The actual procedure involves taking twelve tissue samples from various sites, six on the right and six on the left. They numb the area and then with a 13-inch needle “stab” the prostate through the rectal wall to withdraw the sample. It’s not painful, but you defiantly feel it. It takes about one minute per site. My problem was entirely psychological; I kept focusing upon the needle entering the site, and that really bothered me. By the third sample, I was very ready to leave. The results would take two weeks.
On the 29 of January, the doctor informed me that the results were, in fact, positive for prostate cancer. (All six samples on the left side and two on the right.) They use a system of grading, called the Gleason score to determine how advanced the cancer is. It essentially represents a system whereby 1 to 3 is considered low grade, 4 to 7, medium grade and 8 to 10 the highest grade. Here’s where it gets a bit more complicated. The pathologist examines the samples and grades identifiable cancerous tissue on a scale of 1 to 5, with 1 representative of almost normal prostate cells, while a rating of 5 would denote highly abnormal prostate cells. He then gives a further grade to the two areas most affected by cancer; these two “sets” of grades are then added together to produce the patient’s Gleason score.
In my case I had a high score of (3+4) 7 on the left and a high score of 2 on the right. Please discuss this further with your physician to glean the predictive implications of this scoring system. It’s not something that I quickly understood.
At this point in one’s diagnosis, one must contend with the question of how advanced the cancer is and how quickly you need to consider treatment options. These options for treatment fall into three categories.
Option One: “Watchful Waiting”
Prostate cancer is usually a slowly progressing cancer, doubling in size only about every two years. Depending on how affected the prostate is with abnormal cells, you might be able to wait and explore treatment options and interview several surgeons. In my case, they told me not to wait long, as my case was considered to be fairly advanced. Another cause for concern is containment of the cancerous cells. As long as the cancer is contained within the walls of the prostate, then the potential for a cancer-free recovery is very good. On the other hand, prostate cancer outside the walls is the second leading cause of death in men (of a specific age group) in the United States.
Option Two:
Radiation. This is quick and easy - ½ an hour a day, five days a week, for seven weeks. The upside is minimized long-term issues relating to sexual performance or incontinence. The downsides are, however, significant – a substantial risk of the cancer’s return in addition to the risk of the introducing new cancers (such as bladder or rectal cancer). Also, subsequent surgery if the cancer does return is substantially complicated due to existing radiation damage to the prostate and surrounding tissue. This is an option I recommend carefully researching.
Option Three:
Surgery – The Radical Prostatectomy (Complete Removal of the Prostate Gland). This option (and my ultimate choice) can be carried out in one of two ways: A) Traditional surgery involving an large incision and removal of the gland. B) The Da Vinci Surgical System, a minimally invasive surgical procedure. Surgery is considered the best option if the cancer has been identified while still contained within the prostate gland.
The downsides of such a radical surgery must, however, also be understood and evaluated with your physician. There is a risk of temporary or even permanent sexual function as the two nerves that surround the prostate control and control erections, might be permanently affected during surgery as in many cases one or both of the nerves will need to be removed to create a clean margin of cancer-free tissue. (I was lucky and one was completely left intact and only a small part of the second was cut).
The second concern is loss of bladder control. The bladder feeds into the prostate gland via the urethra and part of this surgery removes a section of the urethra. What does this mean immediately after surgery? You wear a catheter and a “collection bag” for a week and then you usually wear a pad until bladder control has been regained.
I choose the surgical option for several reasons. In terms of this particular cancer, I am considered reasonably young (forty-nine) and I was optimistic that there was a very good chance of sparing the nerve(s). I was also confident I would be able to conquer the bladder control issue. The most important consideration, of course, was to be absent of the cancerous tissue existing inside me.
Once you have your option defined, the work is far from over as you start the necessary process of evaluating doctors you are considering for your procedure. I knew nothing about the details of the surgical option, nor what questions to ask in order to make a medically sound decision.
I went to my family doctor and asked him what I should do. He spoke of radiation in less than glowing terms and was divided in his opinion regarding traditional surgical removal of the prostate vs. the robotic surgical option. Some things he did point out were as follows: Robotic surgery has the advantage of a faster recovery time, less blood loss and is, overall, considered less invasive. I asked for recommendations of the most respected institutions for robotic procedures and was provided with the following: City of Hope, USC, UCLA, UC Irvine. All are considered “Centers of Excellence,” he added that City of Hope is considered the most experienced with robotic procedures.
I was a little overwhelmed at this point, having never shopped for doctors or hospitals before, so my wife and I approached a friend who works at UCLA. She asked them who they would go to for prostate cancer, and the definitive choice was Dr Reiter. We made an appointment with him and found him to be both professional and thorough, so much so that I felt I didn’t really need to look any further. He explained everything from the risks to benefits and gave me reasonable expectations of my potential outcome with the robotic procedure. I felt I was truly in a “center of excellence,” with a great doctor and staff. But to really feel confident that you have done your homework, you have to balance such a great first impressions with another perspective and for this reason, we made an appointment to see Dr. Dunn at the USC Norris Cancer Center. I really like Dr. Dunn and he helped me start the balancing process of: do I need a CAT scan? Do I need a bone scan? why or why not? The only down side of USC – Norris, was its location. It’s in a very poor part of town, not that I would be spending anytime outside. Given all things being equal, as I believed they were at this point, I’ll take Westwood.
We decided to explore as a final option, UC Irvine’s Dr. Ahlering, a leader in the field of robotic surgery. My father had gone to Dr. Ahlering several years ago for the same procedure and had a quick and uncomplicated recovery. We made the appointment and my conclusion was that both Dr Ahlering and his staff were the best we had interviewed, in fact, outstanding! In my opinion, he demonstrated the strongest knowledge base coupled with the most experience -- no gaps, no holes. I found the entire team to be confident and knowledgeable.
The Surgery:
10 days before the surgery date, you come in for a pre-op meeting. They draw blood and ask you about any previous surgical experiences you might have had. They take a chest E-Ray (electronic X-Ray, no film) check your general health and prepare you for the day. They go over the “rules” - no food after midnight the night before surgery etc.. You must wash your hair and body with a special soap the night before and the morning of surgery. You have to use an enema the morning of the operation. Also they want you to use 25mg of Viagra for 12 days before the surgery to increase the blood supply to the affected area.
The day of the surgery, I checked into the hospital at 11AM for a 1PM surgery time. You check in on the second floor and they have you fill out a bit of paperwork, minor in the grand scheme of things! Then they lead you to your pre-op ready room. You disrobe, put on the reverse gown, socks and a blue hair net. You lie down in the bed and they attach fighter pilot g-suit leg squeezers to your legs. One inflates, then deflates, then the other, continually, actually quite pleasant. They insert the IV with a pre-numbing of the area. Incredibly, I didn’t feel anything. The anesthesiologist came in and asked some standard questions (confirming the last time I ate, whether I was allergic to anything etc. Like everyone, she was a very nice, confident woman and I easily trusted her for my soon-to-be unconscious state. Then the O.R. nurse came in and gave me a mild sedative and all I recall is saying goodbye to my family, a brief recollection of the elevator and then entry into the operating room, and finally the shot of Propofal (Diprivan) that sedates you fully for the surgery.
***
My next vague recollection was slowly trying to touch my eyes and someone pushing my hands away from my face. During the surgical procedure, they put a light Vaseline-like gel in your eyes to protect them from drying out. This makes your eyesight a little blurry when you first wake up. When I woke up, I found they had also placed protective goggles on me. They are worried that in your post surgical daze, your normal reaction is rub and possibly scratch your eyes.
The next thing I remember was being wheeled into my own private room. My wife was there and I remember there was a ball game on the TV. After they moved me to my bed, I changed the channel and immediately fell asleep again. I awoke a couple of times for blood pressure and temperature. The first time I woke on my own was 1:30AM, Wednesday morning. I watched TV for 10 minutes or so. The nurse walked in and asked me “why are you awake,” I said I didn’t know. Then I realized it was still dark outside and it was 1:30AM. I went back to sleep.
I woke up again around 6:00 AM, hungry, tired and a little sore. That was it, a little sore, like I had overdone a bunch of sit-ups or crunches the day before. I had six deep holes in my stomach and that’s all I felt, a little sore! Then it dawned on me, I still had an IV in my arm and I figured I was receiving some sort of pain management via the IV. I slept a little more, maybe until 8 AM when my wife, Suzanne, was now also awake in the room with me. We were both hungry. We ordered food from the hospital menu. I had white rice and a breakfast burrito. It tasted great! The nurse came in a little while later and explained that I could go home that day (Wednesday), if three conditions were met:
1) I could eat and hold the food down.
2) My blood tests were acceptable.
3) I was able to walk around.
By this time I had been without food since 9 PM Monday night, when I had a very light dinner. It was now Wednesday morning 9 AM, 36 hours since my last meal. I was starving, the food tasted great, and I had no problem holding it down. I passed the first going home test, no problem. At 10 AM my blood was drawn and I guess I passed the second test. By 11 AM, I was getting antsy. I wanted to move around. I still had the G-suit leg squeezers on and my IV. Finally, the nurse came in, disconnected the IV, removed the squeezers and I was more or less free to get up. I stood up, held on to the bed railing, tested my footing, so far so good. No dizziness. Let’s walk! I held the nurse’s arm and we were off. First, to the nurse’s station, no problem and then on to the observation area, we blew past that too. We must have walked 150 yards, all the way around the floor taking the scenic route. We were cracking jokes about the “commando” gown I was wearing. I wasn’t moving quickly, but it felt good to be moving at all. Now back in my room. I sat in the chair rather then the bed. It felt good to sit up.
Dr. Ahlering came in and told me everything went well and that that I was officially number 950 in his robotic count! He was happy to see me up and about, and laughed about the fact that it was my wife passed out in my bed! I was discharged around 2:30 PM or so, my wife got the car while I packed up our belonging -- plus all the goodies the hospital gave us! It was now 3pm and my last dose of IV drip pain killer ended at 11AM, when they removed my IV. That was four hours with no pain killers and I was still feeling as though I had simply over exercised rather than having undergone major surgery. (As a side note, I’m not some super hero that loves pain. I have had other surgeries on different parts of my body, my right shoulder being the most recent. The post surgical pain was intense and could only be managed with Demerol or Morphine).
The first and only real set-back occurred on the car trip home. The g-forces and bumps acting on my body were intense and painful. Every stop, start, lane change and bump registered in my brain as an “Ouch” some as “OUCH!!!” Part of the blame has to go to CAL Trans as we undeniably have the worst roads and freeways in the nation. The only thing I can think of to mitigate this problem (other then fire Cal Trans), might be to use an ice pack on the wound site, for the ride home. Once I got home, it still hurt UNTIL I applied an ice pack (a bag of frozen peas). After 45 min the pain had subsided and I felt fine again. I only felt any telling sign of the surgery when I transitioned from sitting to standing or from lying to sitting.
Thursday was uneventful, I cleaned my office, did a bunch of work on the computer. Drank a ton of water. Very little pain. Took three Ibuprofen (one every eight hours per the discharge instructions).
Friday, I walked 1.3 miles in two trips - no pain. My wife and I walked to a local restaurant. I had a fish and chips and a Diet Coke, took two Ibuprofen, and then stopped before the third as there was no pain. Saturday, I walked 3.0 miles straight, on the sand – no pain, (lots of tar on my feet). We made real sliders for dinner, I had six… Damn they were good! Sunday, my cat got sick, and I drove her to the veterinarian – my first time driving. No more issues with the bumps in the road. No pain and I felt quite mobile.
Monday morning my first annoying issue. The catheter tube was getting itchy inside me. Not painful, just very annoying. I used the Lidocaine Gel and that helped. That day I went to Costco to buy the pads (‘Always’ brand ultra thins and some of the Always Med pads.) I was pretty self-conscious buying them, if I had it to do over again, I would have bought them on-line (Amazon), just to avoid the stress. Around midnight that night, the itching sensation was awful. I took the (post catheter removal) Cipro, and within a couple of hours everything had returned to ‘normal.’ I was guessing there was an infection.
Tuesday, one of the happiest days I can remember - the removal of the catheter tube day. The catheter is two tubes in one. One tube is to urinate through; the other tube is the control tube for the inflated balloon that holds it in place inside your bladder. The nurse had me disrobe and put on a gown. You then lie down on the table, face up. She removes the cap on the control tube, and then uses a syringe to deflate the balloon. She tells you to take a deep breath and three seconds later it’s out. I had great fear and trepidation that this would be painful, but it was not. The only thing I can liken it to, is swallowing some string and then pulling it back out. You can feel it, it doesn’t feel great, but certainly doesn’t hurt.
The last battle to conquer is incontinence. Since the surgery removes some of the muscles that you normally use to stop urine flow, you must wear pads to soak up any leakage. This was the last thing I was really concerned about. I found out quickly that peeing was uncomfortable but very controllable. I had the normal urge to go, and was able to hold it easily until I got to a restroom. I was a little concerned about how all that would work overnight in bed, but that was OK too. Definitely a molehill, not a mountain. I stopped using the pads three days after the catheter was removed. I might be outside the norm here. I did Pilates for three years. Pilates is designed to strengthen your inner core muscles groups and I really believe this helped me greatly in regaining control. I used ½ of a pad twice the second week, and that’s been it.
I am so impressed by both Dr. Ahlering and his staff and am still stunned by the lack of pain I have experienced and how fast I was able to return to a sense of normalcy.
A couple of suggestions to anybody that may go through this procedure:
1) Keep a log of everything you are experiencing, before, during and after. It will help you ask questions, and keep your mind active in a positive way.
2) Walk. I recommend an hour a day for at least the two weeks before surgery. Then after surgery, it will be a lot easier to get up and get moving. It makes you feel amazing to walk three miles, three days after surgery. (My father #171 of Dr. Ahlering’s robotic surgery patients did five miles post-surgery).
3) Have faith in your doctors. Don’t hold information back.
4) Eat a good meal the night before surgery. Not more then you would normally eat, but make it special.
5) Consider taking some Pilates classes before your surgery. It really helped me. I’m looking forward to going back.
6) Remember, you are going through all this because this cancer left untreated will kill you.
7) After surgery, stay up on your blood test. There is a possibility there is something still there.
You will be back to normal very quickly in the grand scheme of things.
Thank you Dr Ahlering for taking such expert care of me and for making this journey as tolerable as it could possibly be.
Dr Thomas Ahlering
MD University of California Irvine
1-714-456-6068 http://www.urology.uci.edu/prostate