I have been following this forum for several months, generally passively, sometimes with a comment or two, usually with questions rather than insight. Finally, Mama Bluebird had had enough of this hangin' around and suggested that I start my own thread. I've put off starting, primarily to get my thoughts in order. (It's amazing how much I had forgotten -- or perhaps surpressed -- since my diagnosis), but also because I'm not sure what I can offer than hasn't been expressed by others. But realizing that each of our journeys is unique in least in some respect, here goes.
THE PHONE CALL
I had had routine PSA's for several years. I can't remember the early scores, but they were consistently low enough that there never was an issue. Prostate cancer? Sure, I knew it was out there and "one of the most frequently diagnosed cancers for men," but really, I never gave it a thought. That is, until 2000. In the space of three months that year, my brother (9 years older than me), my brother-in-law (3 years older than me) and a friend (same age) all got the bad news. (Interestingly, they each chose different treatments. All are doing well, by the way.) Even then, I really wasn't concerned. Early this year, I had a routine physical. As usual, my dr had ordered blood work to be done prior to the exam. He told me that my PSA had risen from 1.85 in 2004 to 3.43. Could be nothing, he said, but to be safe, he recommended a biopsy and referred me to Dr John Corman at Virginia Mason Hosp in Seattle. I was a bit concerned, but 3.43 was nothing, right? My brother-in-law's had been over 12. Probably just an anomalous reading.
I saw Dr. Corman a couple of weeks later. DRE was negative. He explained that I could wait and watch and also that there was another blood test he could do. BUT because of my brother's PCa, he thought a biopsy was probably the right thing to do. I agreed, and a few days later, he performed a 10-core biopsy. Other than the initial indignity, the procedure wasn't nearly as uncomfortable as I'd feared. He couldn't see anything of concern on the video, but commented that "the devil's in the [microscopic] details."
Over the next few days, I wasn't worried. Actually, I was more concerned that I was still bleeding through my penis - and in fact had stained a new set of sheets. (D*mn stains still won't come out.) The PHONE CALL came on Thursday of the following week. One core had been positive. A small (1 mm) nodule, adenocarcinoma -- non-aggressive, slow-growing. I had just come out of a meeting in another office, and I remember standing in the elevator lobby for several minutes after the call -- in absolute disbelief and shock. Me? I had cancer? Can't be.
MAKING THE DECISION ON TREATMENT
I saw Dr. Corman again about a week later to discuss treatments. He'd also scheduled a visit with a radiologist to discuss alternatives to surgery. Watchful waiting? Surgery? Seeds? Radiation? I remember both drs asking if I had any questions. I said no.
For the next three weeks, I put the whole thing out of my mind. A BIG case of denial. I had told my family, of course, and word was passed to a couple of close friends. I remember getting a phone call from one of them to express her concern. Incredibly, I acted as if there was absolutely nothing wrong. I even stammered something to the effect of "Why are you calling? This is no big deal." I'm not even sure I thanked her. What a jerk! I had asked Dr. Corman when I needed to make a decision. He reassured me there was no immediate crisis, but I should probably make up my mind in a couple or three weeks. If I chose surgery, there was a two month wait. TIME'S UP! I was in a daze. Then I discovered this forum. . . Then I bought Dr. Walsh's book. . . Then I got scared.
I stayed up all night reading Walsh. I spent hours reading the HW posts. I was upset about the cancer. Dr Corman had reassured me that my cancer was treatable. Better than 90%, he said, for no recurrence. In fact, at one point, he said "I have many patients who would give their right arms to have your diagnosis." But I was terrified about the possible side effects. I cried -- yup, cried real tears -- when I read and for the first time understood and appreciated that this was no joke. Cancer is a b*itch and there are no easy answers.
At the end of the day, my decision was based on some practical realities. First, seeds were not really an option. Dr. Corman estimated my prostate size at more than 63 cms, much larger than average. At that size, seed implantation was unreliable. Before seeds could be implanted, I would have to go on hormone therapy for several months to shrink the prostate, and hormone therapy didn't always work. OK. Seeds were out. I'm not taking any chances that some part of my diseased gland is going to survive and reproduce little baby cancers. (As it turns out, my prostate was a whopping 90 cms! Nothing to worry about in and of itself. "Just like having a big nose or big feet," the good dr assured me).
Radiation. My brother chose this treatment and, as I said, is doing well 6 years later. Well, kinda. Dr Corman explained, and my brother confirmed, that while bowel incontinence is generally not an issue for most patients (and urinary incontinence is rare), there is a long-term issue with sexual function. As Dr Corman explained, for most surgery patients, ED is a problem at the beginning and improves over the next 18-24 months. Virginia Mason's stats indicate that 72% of surgery patients with bilateral nerve sparing regain "what they had" within two years. With radiation, however, the curve heads in the other direction. ED is not generally a problem at first, but as scar tissue develops, sexual function suffers and many men see a decline over time. As Dr Corman put it, with both treatments, what you have at 2 years is "probably" what you're going to have forever. I decided that I'd rather have the curve heading up, not down (pun certainly intended).
The bottom line for me was age and not wanting one single cell of cancer left in my body. I was just past my 60th birthday when diagnosed. Statistics generally indicate that all three threatment options have about the same recurrence rates over 15 years. After that, no one really knows. Assuming I'm a statistical average male, I should live to be 78 -- more if I quit smoking (I did) and lose some weight (still working on that). I'm not very adventurous, and facing the prospect of a recurrence in my twilight years was not something I was comfortable with. Just as important, I JUST WANTED THE D*MN THING OUT!
So, I scheduled surgery for June 7. I slept like a baby that night.
You know, I wasn't a bit worried about having the surgery. Slept well the night before -- after completing the purging process, of course. I checked into the hospital at 10 am and was called into surgery prep about 30 minutes later. Then I laid there and waited and waited -- and waited some more. I started getting anxious, and when I get anxious my bladder shrinks to the size of an anemic pea. I went to the bathroom at least three times before I was wheeled into the OR. I remember talking to the anesthesiologist about something I'd recently read -- that one of the drugs they give you paralyzes you completely, including your ability to breathe (thus the respirator business). Don't worry, she said, we have lots of other drugs that can bring you back in a jiffy. Great. Just make sure you grab the right vial. I also remember the male surgical nurse introducing himself and explaining he was going to shave me and get me ready. I told him to be good to the little guy, and with that drifted off to la-la land.
Surgery lasted about 2-1/2 hours and I was into recovery by about 3:30 pm. I think I was taken to my room about an hour later -- things are a little fuzzy. Not much pain, at that point at least. My family came up a few minutes after I was settled. I was pretty groggy, and finally told them to go get some dinner. All I wanted to do was sleep.
I woke up in early evening and felt -- great, actually. I started walking up and down the halls that night. Actually made a couple of rounds before turning in. General anesth was wearing off and I discovered my best friend for the moment was the automatic morphine drip gizmo. A little bit of pain, a little dose of the good stuff, a little bit of pain . . .
By the next morning, I was feeling pretty good. Dr came in about 11, told me that everything had gone very well. They'd had to make one of the incisions slightly larger to tug that hummer of a prostate out, but both nerve bundles had been spared and looked good. Visual inspection of the prostate itself showed no generalized cancer, and lymph nodes looked completely clear. So far, so good. One rather unpleasant thing was when they removed the drain tube. It hurt, but not really that much, but what a weird feeling. For one thing, I didn't realize it stretched across my whole abdomen. It felt like a snake sliding across my innards on its way out. Definitely an OOUCH! but only lasted a few seconds. What a way to say good-bye. I was home by 3 pm. Then the fun began.
RECUPERATING AT HOME
I hated the catheter. It wasn't really all that uncomfortable at first, but it was messy and I never could get the little tape do-dads to work when I needed to use the smaller "travel bag." I probably ripped off more hair than a barbershop changing that d*mn tape. By the fourth or fifth day, however, I felt like I had a razor blade stuck up there. The catheter was REALLY irritating my insides. Fortunately, I only had to put up with this for the last day or two.
I had bloody urine for the whole week I had the catheter in. The nurse had warned me about that, so I wasn't concerned. What no one had told me about, however, was the painful bowel movements! Oh .. my .. God. I don't want to scare any of you newbies, and I'm told not everyone experiences this, but trying to have a BM was awful for at least the first 3 days. Not only that, but when I strained to, you know, get things to move, I bled like a stuck pig through my penis. I mean, really bled. Called the dr. "Not to worry. Just let us know if you produce large clots. This, too, shall pass." It did, gradually, although I continued to leak a little blood from the front when using the back for the next 2-3 weeks.
PULLING THE PLUG
As much as I hated the little sucker, I was REALLY worried about removing the catheter. THE MOMENT OF TRUTH HAD ARRIVED. Fully expecting the worst, I took three pads with me to my appt. I laid down and the nurse told me to take a deep breath and breath out slowly. It was out. Another ouch. But -- no drips. I stood up. No drips. Got dressed, with a pad in my shorts. No drips that I could feel. Stopped in the men's room as I left the office. No drips, and I actually pee'd like normal. What a great beginning -- but it was only the beginning.
Pads are a good thing. Despite my good begining, I didn't have full control. I went through probably three, sometimes four pads a day for the first couple of weeks. I found that as I increased my activity level, I leaked more. Even on a lazy day, I got pretty tired by late afternoon, and I'd leak more then, too. I did my Kegel's religiously. Gradually, things improved, and I was down to two pads, and then one. Exactly 4 weeks after my discharge, I went to work "bare" and have been almost completely dry since.
I have had a couple of minor accidents, so I keep pads in my bag and at the office, but I think I'm pretty much back to normal. I read somewhere, perhaps on a HW thread, that it's not unusual to relapse a little a couple of months out. That happened to me. Things were going well, and suddenly I started leaking again for no apparent reason about three weeks ago. Started up on the Kegels again and made sure that I emptied my bladder frequently. Dry now again, and keeping my fingers crossed.
I went back to work 2-1/2 weeks after surgery. That was probably too soon. Dr Corman had said that it would take at least 6 weeks for my body to heal and I should take it easy. I could return on an "easy schedule" after three weeks, if I felt up to it. I have a desk job and I figured that work wasn't any more strenuous than staying home, right? Not exactly. I never realized how many times I got up, ran to my secretary or to the copier or into another office for a conference. By mid-afteroon I was bushed! I'd go home and fall into bed around nine and sleep for 10 hours. It probably took two months before I really felt I was back to full strength. Had I to do it over again, I would have stayed home an extra week.
WHERE, OH WHERE, HAS MY LITTLE DOG GONE
Up to this point, I've been batting pretty close to 100. My "thang" was pretty tired for the first couple to weeks, but considering all the abuse he'd taken, I wasn't surprised or worried. Besides, I was too tired to think about it. When I saw the dr for my first post-surgery check-up, he put me on 50 mgs viagra for "nerve stimulation following surgery." (That's what the prescription says -- really.) Recalling the statistics that 70%+ of patients with bilateral nerve sparing regain an erection "sufficient for penetration" (I love that), I figured I was home free. A little blue pill and wham!
It hasn't happened. I took the first dose, and then a second three days later. OK, so my buddy's still worn out. After a couple of weeks, I was in a panic. They said to call if I had any questions, so I called. I have a BIG QUESTION! Why is nothing happening? My dr's nurses are GREAT! (My dr's great, too, but his specialty is surgery, not bedside reassuring.) Nurse Joanie (I can't believe I've gotten comfortable telling a woman about my erection issues. My wife says welcome to the club.) said they don't generally see much of a response initially, and that it's not unusual to have little or no response for the first three months. OH, GREAT. WHY DIDN'T ANYONE TELL ME THIS SIX MONTHS AGO!! WHAT about THE 70%??? Joanie gently reminded me that the 70% was over 18-24 months. Be patient. Have faith. Keep trying. Oh, and up your dose to 100 mgs.
Well, I'm being patient, I certainly keep trying, and I try to have faith. 100 mgs has gotten things started, but believe me, it's not anywhere "sufficent for . . ." well, you know. I saw Dr Corman last week. He gave me the same message. "I saw your nerves. You're going to be fine." One disappointment, though. I asked him if I could ever expect to be "sufficient for" without Viagra. In classic surgeon-speak, he said, "It will be better with Viagra." Is that a yes or no?
* * *
Well, there you have it -- my journey so far with this cursed disease. Despite all the frustrations -- and still some fear (I don't have my first post-surgery PSA until next month) -- I'm really lucky. I know that things could have been and could be a lot worse, and I thank God things have turned out as well as they have.
One little blip on my radar screen. One rather nice side effect of having your prostate removed, for many men, is you can urinate with a full stream (pee*ng like a 17-yr old, as my brother-in-law puts it). about 4% of surgery patients experience a build-up of scar tissue at the point where the urethra is re-joined to the bladder. I'm in the 4%. about two weeks ago, my stream started getting slower, and slower and weaker and weaker. So, I'm scheduled to have a "cystoscope and dilation" in a couple of weeks. They don't cut anything out - just stretch the muscle and open up the area of scarring. Dr. Corman assures me that I'll be "pee*ng like a 17-year old soon." Too bad I can't be doing something else like a 17-year old.
To you newbies: Being told you have prostate cancer IS scary. Ther ARE really tough decisions to make. But there IS life - good life - after (and with) PCa. Just read the other threads on this forum. My family, friends and co-workers have been great, but as I've said on other's threads, I couldn't have gotten through the last five months without this forum. THANK YOU to all who have shared your own juurneys. Like we say, this is a club that none of us ever wanted to join, but having had no choice in the matter, I wouldn't trade you guys for anybody!