“Don’t be afraid your life will end; be afraid you will never experience life.”
Disclaimer: I’m not a doc and this is written from the best of my recollection of the events that transpired over many months. If you think you have symptoms of prostate cancer, see your doctor and ask about PSA screening.
My health has always been fairly good, and I was never really sick other than the normal childhood measles, sore throats, colds, etc. My mom died very young (59) from cancer. Unfortunately, back then, people didn’t talk much about cancer as it was consided impolite to say anything about being sick. I always thought that I would go young, yet my dad lived until he was 90. Anyway, I made sure to get a colonoscopy when I turned 55. Sure enough they found a polyp and told me it was a good thing they took it out as it could have turned cancerous. They said to have another colonoscopy in 18 months and so I did. Since they only found a couple of small tidbits to clean up, the doc said not to come back for another one for 5 years. So I felt like maybe I was going to beat the odds.
It’s March, 2006 and I have a Doctor’s appointment. Well, I don’t really normally see the doc as I have a great PA (Physician’s Assistant) that doesn’t beat me up all the time. I think that’s because he’s about my age and a little pudgy like me. When I get there, I’m surprised that the head doc wants to see me instead of the PA. He starts in on my weight and says I’m headed for sugar problems if I don’t start taking care of myself a little better. (In other words he starts beating me up.) OK, so he doesn’t have the greatest bedside manner. Maybe I should listen, after all, I am 60.
After the normal prostate exam he asks me if I have had any problems urinating and I tell him that it just seems slower than it used to. So he says to me, you know, as we get older, we men need to start watching things like that. Typically our prostate gets larger and it slows things down. I said, OK, what else do I need to do?. Well, he says, we need to get regular blood work done to measure our PSA or Prostate Specific Antigen, and, I’m a little concerned as your levels have been going up a bit over the normal level since the last time we measured it. Right, I say, let’s do it. So I scheduled another appointment for 3 months later.
Returning in July, the PA is seeing me and telling me the bad news. He says my PSA has spiked up to 7 and that’s not good. He advises me that this can happen to a healthy prostate but we need to get a biopsy to make sure. He recommends a Urology specialist and I set up an appointment.
I get an appointment to visit the Urology doc. He tells me what to expect and that the biopsy can be done right in the office. He also tells me that my PSA can spike from simply having too much testosterone. That made me feel better but I was still worried.
Now I’m not going to go into the details of the biopsy. Suffice to say, it’s a bit uncomfortable but I’ve been through worse. The Doc called Betsy and me back for a consultation and gave us the bad news. He said that one of the 8 samples came back showing 10% cancerous cells. He said now we know why your PSA spiked all the way up to 7. He also said I had a Gleason score of 7; while that was not good, it was very possible that we caught it soon enough and that the cancer was contained inside the gland. He also told me that prostate cancer is one of the few cancers that is totally curable. I had some relief at that thought. He said the biopsy analysis indicated there was no seminal neural invasion. This meant no cancer in the nerves. The Doc said I had a lot of time to make a decision but certainly I should do something within a year.
I guess I was relieved but now had a thousand questions. The Urology doc was a good guy and told me I was a good candidate for all of the various treatment options. He gave me some references and told me to start checking out the web. I was free to call him with any questions. I went home and Betsy and I scoured the web coming up with a lot of confusing documents. What was Gleason score? What were the treatments that you could have? What were the downsides? We started to hear about all kinds of side effects such as ED, incontinence, etc. etc. Apparently there were many different treatments for prostate cancer and that you choose one that fits your age and life style???? The doc tried to explain all the options but it was too much too soon. I was overwhelmed.
Consumer’s Medical Resource
Thank God I work for Honeywell. Betsy and I found a site on Honeywell.com’s benefits page that talked about a special program called Consumer’s Medical Resource. This is a program that helps Honeywell employees deal with tough medical decisions. After a quick call, I learned that not only would they help me with information, they would put $500 in my health spending account just to try the program. Apparently, a lot of employees were simply not aware of the offering. I signed up and they started sending me information. I was assigned a support nurse as well as an MD. They set up conference call with both the nurse and the doctor to help me through all the literature. The biggest help was understanding the Gleason scores. There are two numbers that grade the cancer. Mine were a 3 and a 4 which of course, equal 7. The problem is you can have a better 7 or a bad 7 depending on which of the two numbers is higher.
Then the packages started arriving. I received web links, full blown textbooks, pamphlets from the American Cancer Society, a veritable library of materials. Then, after the consultation when they helped me interpret the doctors analysis, they sent me a customized report tailored to my needs along with another pile of books, pamphlets and material specific to prostate cancer. In the mean time, I had found a scrub nurse who told me about the robotic radical laparoscopic prostatectomy procedure at Hartford Hospital. I went on line and found a full video about the procedure done by Dr. Vincent Laudone. About this time I had just about made my mind up that I wanted it out.
I talked to my brother-in-law who told me about his experience. Then, through reading all the material, I decided I wanted a laparoscopic robotic procedure since that had the quickest recovery time. I heard that some guys even went home the next day. With this type of procedure, tiny incisions are made versus 1 very large one. The smaller ones heal much faster than the larger cut.
My biggest fear was not the possibility of incontinence nor even loss of sexual function, it was the damn catheter. You see, I had a couple of bouts with kidney stones. If you haven’t had one, you just don’t know pain. The problem was that I had a very bad experience when the nurse decided I needed a catheter and she used the biggest one she had. Since my urethra was already irritated from the stone passing, the pain was extremely intense when she inserted it. So I figured I wanted nothing to do with a catheter. But, during a prostatectomy, that’s the only way they can hold you all together.
The Anatomy of It All
I will digress a bit here since most guys are fairly ignorant when it comes to understanding their plumbing. The Urethra is a tube that connects your bladder to your penis. When your bladder fills, (like when you drink a lot of beer) you get the urge to go. Oh heck, there is no use trying to explain this when you can simply click on the following link and learn all you want. Go to http://en.wikipedia.org/wiki/Urethra.
Here’s the problem; the urethra tube goes through the middle of the prostate gland. The prostate acts like a resistor and holds back any leakage. When we get older, the prostate enlarges and the tube gets pinched off. This makes it harder to go and that’s why older men take longer at the urninal then younger men. So, when you have a prostatectomy, the resistor is gone, and, some guys will have a bit of leakage when they cough, laugh too hard, or swing a golf club too hard. Ok nuff about that. Anyway, I had to have a catheter since everything is separated and you need the catheter to hold you together until your urethra heals.
Back to the Prostate
So, after a lot of thought, talking to the scrub nurse who worked in the robotic lab, (hint: you can learn a lot about which doctors are the best by talking to the right nurses), I decided that I wanted to look into the robotic procedure. By this time, I had learned about all the options including, watchful waiting, (right, if you are 90 that’s a good one to select), radiation was another option, but if it didn’t work, you couldn’t opt for surgery later on. You see, the radiation destroys the surrounding tissue and its almost impossible to stitch up after an operation.
So, I asked my urologist to set up a second opinion with Dr. Laudone. Betsy and I went to see him and we were immediately impressed. He had already scanned my history and said that I was a candidate for just about any of the procedures my first doc told me about. I told him that I was very interested in the robotic procedure. He said I was a good candidate for that as well. We asked him if he could set it up.
I was hoping to get the procedure done during Christmas vacation so I wouldn’t lose too much work time. We lucked out. Dr. Laudone scheduled the procedure for December 6th. But, I still had to go through the registration process. Well, it has been a long time since I went to a hospital and things have really changed. I was impressed to learn they now have something called customer service. The registration procedure was quick, efficient, and very friendly. I was welcomed; all the folks in the chain made me feel comfortable and like a real person. Thanks Hartford Hospital!
The only think I hate more than the thought of a catheter is an enema. Actually, I think I now prefer the catheter. The prep for either a colonoscopy or a radical prostatectomy is worse than the procedure. You have to drink this really vile stuff which makes you go, and go, and go. You get the picture. Then, the morning of (real early, of course) you give yourself an enema. What fun! Actually, the best part of a colonoscopy is the drug they give you. Wow, is it smooth.
Anyway, I checked into the hospital and they gave me a private room to get ready. My daughter was kind enough to come up from Richmond to be with her mom during the operation. After the nurse put in the flow needles, they came to get me in about an hour or so and away I went to anesthesia. I met the anesthesiologist, the guy who would breathe for me. He had a soft firm voice as he shook my hand and said hello. I looked him in the eyes and asked if he would be looking out for me. He said I was going to be just fine. I looked him in the eyes and all I saw was competence.
After they rolled me down a couple of long halls and into the “theater,” I asked where the robot was. The male assistants pointed at a very large, multi-armed monster covered with plastic and then started kidding around. I asked if they had a special name for it, like Robbie the Robot. They said no, but told me to take a look at the hooded games console where the doc played video games while they did all the work. They especially wanted me to see the Buddha parked on top of the console. Anyway, they packed me in tight and the Doc came in and said hi. It was quite obvious how much respect he carried among the staff. They started a new drug in me then put the mask over my face. The anesthesiologist said to take a couple of deep breaths and they would see me in a few hours.
Wake Up and Smell the Coffee!
I had heard all kinds of stories but mainly that a lot of guys woke up starving. I just woke up feeling no pain. I think I was higher than a kite! The nurses told me I would stay in the operating room for a while since recovery was kind of full. The doc came by, pinched my toe and said I went back together real well. The good news was that they had taken out and biopsied the lymph nodes and there was no invasion. This was a big sigh of relief as that meant the cancer had not spread via the lymph nodes or metastasized into other organs. (I’ve always wondered what that word “metastasize” meant. Too bad it took getting cancer to find out.)
They took me back to recovery and I still was feeling no pain. I had a real sweet nurse taking care of me. Of course, I’m sure its simply the drugs talking. Betsy showed up and I ask her if she met my “angel.” (Good thing I could use the drugs as an excuse.) I’m not sure but sometime later, Betsy left and I get moved.
I learned lated that the procedure had taken 4 and 1/2 hours. The robot is called the DaVinci System. The version the doc used on me consists of three flat plates or tool holders. The tool holders accept socketed lengths or rods that have the tiniest little surgical tools you have ever seen. The doc moves his hands at the console controls and the robot mimics his movements but dampened down about 10 times. The doc makes about six tiny incisions about a half inch long. A color stereo camera is inserted in one of these “ports” while other control rods are inserted from the robot. Carbon dioxide is used once in a while to blow up your internals to make some room for all the gear. You really should watch the video. Its very informative. Go to www.harthosp.org/robotics/ and take a tour.
I’m back in a new room and the wife and daughter can’t find me. I’m pretty groggy but I keep a close eye on the pain machine. It’s pretty cool and the nurse says if I feel pain, I can crank it up myself. I’m doing OK so I keep my hands off it and try to sleep. Mom and Michelle finally found me, stayed a bit, but then decide to let me be and go off home. My daytime nurse says goodbye and I meet my nitetime nurse. What a sweetheart. She is from Poland and I love her accent. She hovers over me constantly checking on me. She gets upset because my blood pressure is low. I try to tell her that my pressure is naturally very low. but she stays concerned. At one point she seems so concerned I asked her if I was going to make it. She says make what? You going to be fine she says in broken English. She keeps bugging the doc’s PA and so finally she says I need to get up and walk. Imagine that! Four hours out of surgery and I’m going to get up and walk the halls.
The Dreaded Foley Catheter
For the first time I notice the tube going down to large plastic container on the floor. Hmmm. How do I keep this from pulling my putter off, I wonder? Will the Foley fall out? I remember the PA at the doc’s office telling me I should slide it in an out about a 1/4 of an inch. That way he says, it won’t stick! Yikes! I manage to work myself out of bed and the nurse puts the huge industrial strength container onto the mobile cart. I grab on and get up. Wow, I’m walking. The key is, I need to force myself to walk so I don’t get a blood clot.
I guess the PA finally gave up as the nurse comes in carrying two large bags of fluid. She says to me, “Those prostate docs are tough. I argue with them and they say hokay, you can have fluid.” After an hour or so, she is finally satisfied with my pressure. I get some sleep but am very thirsty. I get ice chips. Whoopee. How about some food, I’m starved?
Finally- food, well, not really, just some soup, jello and tea, but it all tastes really good. Time goes by and I have lunch, well mostly watery stuff. By this time everyone is hoping the anesthesia wears off and my guts come back to normal. I start to pass gas. What a wonderful feeling. Betsy comes in and I say how about some TV. She orders it and it gets turned on right away. We start to settle down and the PA comes in. She asks me if I’m passing gas? To which I comply with a demonstration. She laughs and says, “Would you like to go home now?” I said, “Are you kidding? Sure!”
She pulls out my tubes and I don’t feel a thing. (Oh, forgot to tell you that I had two little collection cups with two small tubes coming out of me to drain the fluids from the internal operation.) She bandages me up and says, “Have a nice day.” The nurse comes by to instruct Betsy in the care of the catheter. (Ok, I was listening as well.) Michelle gets the car and off home we go.
Shower and My Own Bed!
Oh how wonderful to take a shower. It was interesting managing the bag and a pain in the A** but I’m getting used to it. They also gave me a small one that you can strap on under your pants. I wore that when I was able to go down stairs. But it was great to climb into my own bed even if I had to use a small step stool to do it.
10 Days of Oprah
I started counting the days until the catheter would come out. I had to go at least 10 days. I had the operation on the 6th and came home on the7th. I had to make it all the way to a week from Friday. By Monday, I was starting to feel like a human again and began reading and watching TV. I actually got into some of the “WE” chic flicks and also read my email on my Blackberry, so I wasn’t too far out of touch. Got a lot of well wishes from the office and friends who were concerned. Actually, I didn’t feel like doing very much, but I was off the pain medication by that Saturday.
Out, Damned Catheter!
At last, Friday arrives. Off we go to the docs and I am full of anticipation. Will it hurt coming out? Only time will tell. So I get into the office and the nurse says, “Ok, we have got to see if you can void on your own. ” (For you guys out there, void means pee.) I say. “You bet!” She then proceeds to remove the bag to my tube and then, using a funnel, fills up my bladder through the tube with water. After about a gallon or so, (well at least a quart), she tells me to stand up to see if I could go by my self. Sure enough, out the tube it comes. She tells me to lie back and relax. I laid back and gritted my teeth and waited. I hear her say, “OK” and she’s throwing everything into the sink. It’s out! It’s out! And, I didn’t feel a thing! Hooray!!!
Bad News Bears
The doc wants to talk and calls us into his office. He says the operation went very well and there was no lymph node invasion. However, he was astounded to learn that the post operative biopsy of the gland revealed the cancer was far more advanced than anyone could know. From all the preop information, he would have sworn that the cancer was still inside the prostate. Unfortunately, it had gone into the seminal vesicles.
Technically, this is called Stage T3b with no spread to lymph nodes (n=0) and no spread beyond regional nodes (m=0). I am simply devastated. But he says for me to hold on as this is all very manageable and I should not lose heart. He says we removed the seminal vesicles and there is a very good chance that we got it all. However, to be sure we should do some clean up radiation. He tells me to go home and think about next steps as it cannot happen right away. He wants to see me again in a month after I heal up some more and my PSA settles down from the surgery. We leave both somewhat despondent.
After a month off recovering, I’m back to work by January 2 and feeling pretty good. I’m also back to see Dr. Laudone and he says I’m looking great and healing up well. I relate that I think he’s a genius since all the horror stories have not come to pass for me. No incontinence and maybe some hope yet for the other unmentionable function. I’ve had another blood test and my PSA is so low it’s undetectable (less than .1.) This is great news. I asked him how many cancer cells it took to make the PSA go up. He said at least 10,000. That’s not a lot, and he says it takes a lot longer time for prostate cancer to grow. So I’m getting more optimistic.
We talk about radiation and he says that with such a low reading we can wait for a month or so more to get “clean-up” radiation. He tells me I will have half doses of what is normally given in full prostate treatment. This is to catch any microscopic cells that may have escaped. He says the radiation docs use something called Three Dimensional Computer Radiation Therapy or 3DCRT for short. So, I ask the big one. How long do I have? Now before I tell you what he said, think about the question. If you were the doc, you have to take in all the known stats about longevity in males, my weight, potential diabetes, ex-smoker, etc. etc. So he replies, “At least 5 years barring anything else.” But he goes on to say I could live 15 or 20 more years! Let’s see, 61 plus 20=81. Not bad considering Dad lived to 90.
I asked him to set me up with a radiologist doc. He sends me to Dr. Salner at Hartford Hospital Gray Cancer Center. Before I go, I get another salvo from my company’s Consumer’s Medical Resource support group on all the various types of new technology. One of my friends who finances medical equipment tells me about who has the greatest market share. I ask about new stuff like the cyberknife and he points me towards something called Tomo. I look it up but only a couple of places have it as it is such new technology.
Beam Me Up, Scotty
February 2007 and I’m in the Gray Cancer Center waiting room. I’m surrounded by a lot of folks getting daily treatment for cancer. Many of the ladies are wearing head coverings, and I’m wondering if I’m going to lose what I have left on top. I’m thinking that I could look like an older version of my son. He inherited the Poulson hair pattern and is a lot worse off than I am. Poor guy, he got a double whammy from both sides in the no hair department. Everybody seems to have a good attitude and the older lady next to me is humming a tune. One side of the clinic is apparently Chemo while the other side is Radiation. I’m ushered in and the assistant comes in with a file and a digital camera. She tells me that they take a picture of me so that when I come for treatment, they can match everything up including my face to the photo on my file to make sure everything is correct. This makes sense to me and tells me they have developed a sound process.
The doc comes in and he seems to be a good guy. He tells me that the surgical guys do a great job but sometimes they just can’t get it all. He said it is good news about my PSA level post surgery. He also tells me that my doc was right to send me for this kind of consult because in his experience, those that wait for the PSA level to rise and then have radiation don’t do as well as those that get it done right after surgery. He recommends a course of 35 sessions, 7 weeks of daily therapy, 5 times a week. Specifically, he says that I will have a 70% chance of no recurrence if I do the radiation. Those are good odds, so I told him we should go ahead. He then explained what will happen. First, they make a body cast so I can be positioned the same way each time. They will do a catscan to see where my organs have wound up after surgery and also do a tiny dot tattoo to line up the laser beam guidance system. After all the computer figuring, a radiation physicist will hand figure the calcs just to make sure. I start rattling off all this to my golfing buddy and he says, “Only you could get excited about getting a tattoo during all this!” I guess he’s right, keeping a positive attitude is the best medicine.
Just imagine, none of this technology existed as little as 6 years ago. I wonder what it will be like in 10 more years? See, that’s the real hope. Advances in medicine are moving at an astonishing rate. So if they don’t have an answer today, they surely will in 10 more years. The goal is to get to those 10 years and then something additional can be done.
Bottom line, don’t give up the ship just yet. I’m set for March to do the radiation setup and then we start the treatment in April. I’ll be back here to let you know how all that works out.
It’s March 9th and I’m in to see Dr. S again to get setup for radiation. I’m greeted by a cheeful guy named Lee and he takes me back to the rad suite to get set up. He shows me a locker and gives me some blue pull on pants. I take everything off below the waist except shoes and socks. While I’m waiting for Lee to come get me in the waiting room, a bed with a little guy in it is wheeled past me and a family gets up to walk next to it. The nurse is saying everything went well and my heart bounces as I suddenly realize this little one is getting radiation treatment. We tend to associate cancer with older folks and forget that young children also get cancer. These folks at the Gray Center are doing their best to cure them.
I brush away a tear hoping the little fella is ok as Lee comes back to get me. He ushers me into the x-ray room where I’m going to get profiled. Before that happens, the good doc comes in, says hi and asks if I have any more questions. I ask again about the dose level I’m to get and say that my surgical doc told me that I would not get the same amount of treatment that you would normally get for an in place prostate. He says, “That’s exactly right since we would treat a deased prostate with a lot more sessions.” I also ask about the sexual functions and he says there was a good chance that it would all come back but that everyone reacts differently to the therapy. (Hey, one can always hope, right?)
I like this doc as he does give you a lot of hope. Remember, he is the one who told me that there was a 70% change of no recurrence with this “clean-up” radiation. But, no doc can ever give you a 100% guarantee and these are pretty good odds to me so I say let’s get started.
I sign the consent form and he says he’ll see me later. Lee comes in and introduces Pete another tech who is going to help me get everything lined up. The guys treat me with a lot of respect and remark that my scars are very small. I tell them I had the robotic laparoscopic procedure and Lee says that’s a big improvement over his dad’s treatment many years ago.(His dad is still going after 17 years.) Another tech comes in to help mix up the leg mold. The guys place this under my legs just below my knee. It extends down to my ankles and it starts to feel warm as it sets up. The whole purpose of this mold is to position me quickly on the machine when I come in for treatment. While the cast is hardening, they line me up with the lasers. These are really cool as they are mounted on both sides of the suites walls and ceiling. This is used to precisely locate the area where the beam will do its work. They make several measurements, take some x-rays, make some magic marker circles and essentially do their magic.
After the cast is done, they help me off the table and Lee takes me upstairs for my cat scan. On the way up Pete is constantly telling me what’s going to happen, why they are doing it, how it’s going to work, etc. He tells me that I have two clips inside me from the operation that Dr. S is going to zero in on. He says this is a great thing as they can aim the beam to within 1 mm of the target Prostate bed. I ask him when he does the c-scan to look for anything else my doc may have left in there. He says, “You mean like a watch or ring?” I say, “Yeah!”
Next, we get into the C-scan room after a short wait. Pete and another tech who’s name I missed set up the machine. Pete says, “Oh yeah, the doc probably didn’t tell you but we will use a small rectal tube to mark the location on your c-scan.” He says, kiddingly, the doc always lets us tell this to the patient.” He goes on to say, “This is to insure the beam can avoid the rectum.” I laugh and say, “After two colonoscopies and the surgery along with the enemas, take your best shot!” Actually, I didn’t even feel it much as the tech put it in. Prior to doing the c-scan, they placed some reference stickers on both of my sides and my chest. After they took the c-scan, Pete gave me my tattoos. I asked for a motorcycle but he said all he could give me was a period. So, I now have three periods (dots) which will be used to line up the accelerator beam via lasers each time I come for treatment. So, after the C-scan Lee said we were all done. On the way down to get my clothes, he was describing how he was going to put all the c-scans together to create an overall picture of my internals and how these would be used to make sure everything was done correctly. He said a radiation physicist would review everything and perform calcs to determine the beam output, etc.
I have to say, I was extremely impressed with the professional, cheerful manner with which I was treated by everyone who worked with me to get set up. I look forward to getting this next phase of my treatment over but feel I’m in great hands with Dr. Salner, Pete and Lee.
I’ll be back again to let you know how I’m doing after the treatments begin. Stay tuned.