Me and My Gland
I was diagnosed at the age of 54 in late May 2008 with adenocarcinoma of the prostate, Gleason 3+3=6, PSA 4.6. I did not have palpable tumors and my only symptoms were nocturnal urination (one to two times) and an enlarged prostate.
In July of 2008, I had a laparoscopic bilateral nerve sparing radical prostatectomy (BNS-RAP) at City of Hope in Duarte, CA, performed by Dr. Mark Kawachi. My pathology was very good, clean margins, unaffected outer tissues... indicating a very high likelihood that Ill have undetectable PSAs, hopefully forever. I was continent within hours of catheter removal. And on day 12 during sleep, I definitely achieved my first erection.
Due to a family history (father, older brother, uncle, cousin), my PSA was tested beginning ten years ago by my San Francisco urologist; values ranged from 3.8 to 5.6, up and down. An ultrasound in June 2002 showed numerous prostate calcifications; this could explain the elevated PSA. We also took a biopsy in 2002, the results of which were benign, except for one of the eight cores that the lab requested we re-do. My urologist discounted this request and said not to worry. I visited this urologist for several more years without ever discussing further biopsies; my PSA remained in the aforementioned range, never exceeding 5.6, and sometimes dropping close to 4.0.
I have no other notable health issues except early glaucoma that I treat with eye drops. I am 6' tall and weigh 175 pounds. I work out with weights and also do cardio about four times weekly for at least an hour. I drink moderate amounts of alcohol about four times weekly, including liquor, wine, and sometimes beer. My diet is heavy on salads for dinner, but I also eat fish, poultry, and sometimes red meat.
Bad News, Good News
It wasn't until I moved to Los Angeles and visited urologist Dr. Robert Pompa in 2008, that I learned that my 2002 biopsy report showed the term "suspicious" for one of the 2002 samples. I was not aware of this report or its wording and it concerned me. It also concerned Dr. Pompa who thought it was odd that I had not been re-tested. If you ever have a prostate biopsy, make sure to ask for a copy of the report so that you can read it.
Dr. Pompa immediately recommended a prostate biopsy regardless of my PSA. In January 2008 my PSA was 5.3 and just before my April 2008 biopsy, my PSA dropped to 4.6. Because two different labs performed these reports, it's possible that the assays were not the same, or perhaps other factors could cause the decrease.
The recent biopsy showed that from the same area of the prostate that was labeled "suspicious" in 2002 I now had a sample showing that 8% of the sample was affected with Gleason 3+3. On the other lobe, I also had a "suspicious" label for one of the cores. This 2008 biopsy used 14 samples. It was clear that I had prostate cancer, but how I was going to treat it?
I spoke with many people about my case:
* Two urologists in addition to the one who performed the biopsy
* Two other urologists who I met outside of a medical setting
* Two family members who are doctors and who have had prostatectomies
* A radiologist at Cedars-Sinai
I also called the Loma Linda and M.D. Anderson Proton Beam Centers to discuss proton beam therapy. My new urologist, Dr. Pompa, and all of the others, even the radiation specialist at Cedars, said that I should have surgery: this would be my only chance for a cure. Dr., Pompa recommended that I have a laparoscopic BNS-RAP at City of Hope (COH) and have Dr. Mark Kawachi perform it.
Surgery appeared to be the only treatment that would offer me a chance to be cured. Even the radiologist at Cedars said, "I can't in good faith recommend my services, because surgery can cure you: you have a small focus of cancer and radiation would not guarantee you a cure where with this case, surgery can. You're young, you will tolerate the surgery well, and your outcome could be the "gold standard" of being completely cured, continent, and without erectile dysfunction."
I later met Dr. Kawachi, and the brevity of the appointment with him left me a little skeptical. We spoke for about 45 minutes, which to me, was a short time for me to consider whether he was the right person to perform this major surgery for me. I later realized that this was simply because Dr. Kawachi is a very busy surgeon and in great demand -his time is quite valuable, but he eventually took a lot of time with me and proved to have a top notch bedside manner.
However, I didn't know much about Dr. Kawachi at the beginning, so I began researching surgeons, even getting another opinion from a surgical urologist at UCLA who said he would recommend the same surgery and be glad to perform it. I also considered proton beam therapy, but the side effects and success rates of all radiation treatments were second to the "gold standard" of radical prostatectomy for hopefully localized disease that would cure me. This could only be accomplished with BNS-RAP. Even when I called Loma Linda and the M.D. Anderson Proton Beam Centers (in Loma Linda, CA and Houston, TX respectively), aids at both institutions said surgery was my best option if my cancer was caught early and if it hadn't spread.
I asked for references from Dr. Kawachi and the list comprised two pages. I called several ex-patients, and heard nothing but praise for all facets of the process from initial meeting to the post operative care. Encouraged, I also searched the internet and found several references to how good Dr. Kawachi was. Even though a U.S. News and World Report article ranked COH at number 30 and UCLA at number 8 among US hospitals, I chose Dr. Kawachi at COH.
The Time is Near
I went to COH for my preoperative evaluation about two weeks before surgery. I was warned that COH is somewhat like a factory, and I have to admit that I was concerned about that and hoped that my impressions of the facility would be the opposite.
The pre op appointment went smoothly, especially considering that I was late. The staff accommodated me graciously and I wasn't penalized for my tardiness. The pre op results were good, so I expected to have my surgery two weeks later.
Working with COH scheduling was fairly easy. Although they said to expect to hear from them the day before surgery, I called a few days earlier and asked to be Dr. Kawachi's second operation on my day, not his first. This was because to be first, you have to arrive at COH by 5:45am... which seemed awfully early. The schedulers said they would try their best to accommodate me.
The afternoon before my surgery, I checked into the Langham Huntington Hotel in Pasadena, CA. This hotel is about eight miles from COH. The hotel was beautiful and the pool inviting. After check in, I drank my required magnesium laxative. It's a mild laxative, but it did cause me to go within about three hours of use.
That evening, we went to Japon Bistro which is a highly recommended sushi restaurant on Colorado Blvd in Pasadena, about 2 miles from the hotel. While I was ordering dinner, Dr. Kawachi called me to answer a few last minute questions, namely: I'd been concerned during pre op that I had to sign a waiver permitting an assistant to help Dr. Kawachi with the operation. I was surprised when I saw this paper and expressed concern because I'd been told that Dr. Kawachi performs the surgery, no one else. I didn't want a ghost surgeon. Although the staff assured me that Dr. Kawachi was the only doctor behind the console driving the Da Vinci robot, I was concerned. Dr. Kawachi called me to assure me that he was doing all of the nerve-sparing and incontinence related surgery and that in total, he is the one who performs the operation. He also told me it was ok to eat whatever I wanted as long as it was a light meal, so we ordered sushi and sake and tried to have a good evening despite my impending operation.
Unfortunately, we didn't sleep well at the Langham because employees were in a nearby service room making noise all night. The hotel manager was very apologetic and paid for our entire stay. Patients, family members, and friends of COH patients receive a discount at the Langham Hunting Hotel (a former Ritz Carlton property), so they wanted to amend the issue to the full extent possible.
On the morning of surgery, I must have had sabotage in mind. I didn't want to go to COH. I didn't want to have the surgery and I wanted the phone to ring and have someone tell me that my operation was cancelled. I even "forgot" to print a map of how to drive from the Langham Huntington Hotel to COH. We got completely lost in Pasadena. I called COH to tell them I was having problems finding the hospital, and a surgical nurse kindly helped me by looking online and guiding me to COH. I arrived thirty minutes late to check in and luckily, that didn't matter.
My anxiety was almost overwhelming and all I could think of was what could go wrong during this operation. The pre op nurses were somewhat robotic. When I arrived at pre op, a nurse assigned a bed to me. Her exact (and only) words as she walked me to bed number four were "Clothes and personal belongings in the plastic bags, gown open at the back."
I was surprised. If this was COH's idea of personal health care, then I'm in trouble. This was not the greeting that I expected. I asked, "Uh, what gown?" I couldn't tell what was gown or what was plastic bag. I indeed began to feel like I was in a factory setting and I was just another patient. The implication was that this procedure was very routine for the nurse... that it was new for the patient seemed irrelevant.
I laid in my bed wearing an automatically heated gown (that really helped keep me warm) and waited with my partner; it was 10am. The air conditioning was running full force, keeping the large room chilly at about 60 degrees. No one was able to initially explain how my partner was going to be informed about my progress (or lack thereof) and what would happen post op, such as where my partner could find me, how he'd be notified about when I'm out of surgery, and so on.
As time passed, it was 11am, then 12 noon, and I still hadn't moved. By then, the pre op nurses had become much more personable and offered more information, blankets for the cold non-patients, and attempted to assuage my pre op anxiety.
Around noon, Dr. Eugene Bak, the anesthetist, appeared, so I new it was time to really get nervous. He spoke very quickly and with a bit of an accent; he was difficult to understand. I know he was explaining the details of the anesthesia as quickly as possible, but I was asking questions. Anesthesia is my biggest concern: I have a minor, benign heart problem and I wanted to make sure I was going to wake up so I could see retirement. I then was given a paper to sign, which I didn't sign immediately because they forgot to give me the second page of the papers on which Dr. Bak had presumably check marked "General Anesthesia," as opposed to spinal, epidural, and so on. I eventually saw the second page then signed the paper and was ready to go. But still no movement into the operating room.
At around 1pm, Dr. Kawachi's operating room nurse introduced herself and she was the nicest person you could imagine. "Leah," from Hawaii, said I was going to have a great operation, but there was a delay: a heavy-set man's prostatectomy was taking longer, and I'd also overheard another doctor comment to another patient that the hospital had run out of beds. Surgeries were on hold pending room availability. It was not until 3pm when I finally was given my first shot of Versed, which calmed me. Then I removed my contact lenses, put them in their case, and handed it to my partner and bid him "fare thee well."
Retrospectively, I wish I had asked to be Dr. Kawachi's first surgery, not second. I thought that being first and getting to the hospital by 5:45am seemed awfully early. I later learned that as morning progresses, surgery schedules tend to get more and more irregular.
When I was finally rolled into the even colder operating room, I was moved from my initial bed over to an odd-looking table that was covered in pink styrofoam-like plastic. Then Dr. Bak placed a mask over my face. The next thing I knew I was groggy and in great pain. I was moaning loudly and asking for help. Within a few seconds, someone tended to me, probably giving me more pain meds. I then recall being wheeled through the hallways... I laid in the bed watching ceilings going by, one after the other and finally, I was placed in ward B, room 8602. I was out of recovery.
My room was larger than most, private (most/all COH rooms are private), and it had a cot for my partner, not a full bed. It was dark outside. 8pm! I was in great discomfort; my insides felt like I was full of gas. I was told that the operation requires using CO2 that permeates your intestines. They inflate you to enable the surgeon to move around among your organs more freely which also makes room for the Da Vinci tools. I was glad to have "made it," but I felt awful and bloated.
Various nurses tended to me that night. I had shoulder pain and intense intestinal cramps that the nurses claimed was from the C02: I needed to take more pain medications and get up and walk, although even just lifting up my rib cage to elevate myself on my elbows was an ordeal. I felt like I'd been poisoned by a bad can of frijoles. It was very, very unpleasant.
I also had clot preventing leg pads wrapped around my thighs and calves that inflated and deflated automatically every few minutes. The noise from the air pump and the sensation from the inflation and deflation cycles were soothing on one hand, but also distracting. The pump ran constantly and it was difficult for a light sleeper like me not to notice the inflation and deflation cycles.
My IV pain medication was Toradol. I don't think it worked. Every dose that I received may have made me feel better, but I was still having sharp and persistent abdominal cramps and if they wanted me to get up and walk, Toradol wasn't doing the trick. Finally, at around 10pm the first night, I forced myself out of bed, but I was barely able to walk. I went outside my room, took a few steps, and wanted back in bed, ASAP.
I also felt very dehydrated and I wanted to drink a glass of ice water, but because of the anesthesia's after effects, I was advised not to drink anything. Eventually, the nurse gave me ice chips so I could at least put them in my mouth, melt them, and spit out the water. I did this for several hours. But I was warned not to drink anything, just in case I got nauseous.
That night, I had such bad intestinal cramping that I didn't sleep. I didn't even think of asking for a sleeping pill. I'd felt like I'd taken enough drugs for one day, so all night I laid awake trying to expel gas or just get comfortable. It was impossible. I wish I'd have asked for Xanax. The leg pad air pump was the only sound in my room for hours. The hallways were very quiet, and every so often Roy, my adept and caring night nurse, quietly slipped into my room to check on me.
By morning, I was not feeling much better, and of course, I was tired. I was finally permitted to drink light sips of water to see if I could tolerate it. I drank very small amounts without a problem. My urine was somewhat dark: I was dehydrated but getting IV saline. The catheter didn't bother me as much as I thought it would. Someone emptied the bag routinely and measured its contents. I was looking forward to sleeping later in the day. Breakfast was all liquids and my appetite was weak. The most solid thing I ate was Jello, and I didn't each much of it.
As hours passed, I began getting up more frequently and walked more. The cramps persisted but I was unable to incite bowel activity. I'd also been given an IV bowel stimulation drug (Regalin?). I began massaging my gut just to push the gas around. Finally my night nurse, Roy, listened to my bowels with a stethoscope. He offered tips about which side to lie on and that helped a lot. But still, no gas.
By late afternoon, I was expected to go home, but I didn't want to go home because I felt terrible: I was still bloated, had shoulder pain, and hadn't eaten anything solid. A case manager agreed that I wasn't ready. Nonetheless, one of the nurses told me at 3:30pm to get ready to check out. I got into an argument with her over the issue, and she said I wouldn't be in this situation if I'd listened to her: "I told you to take two Percoset but you only took one at a time. I've been a nurse for 37 years and I know what I'm talking about!" I countered that I didn't want to leave, felt lousy, and could barely walk because of my gas cramps. I called the case manager who straightened out the situation, but I was perturbed at being put into this position in the first place: a patient shouldn't have to argue for another night in a hospital because they don't feel well. Luckily, the case manager overruled the nurse and I was permitted to stay another night.
Staying an extra night relaxed me and I was looking forward to dinner even though it was only liquids. Food and drinks were starting to taste very good to me. Unfortunately, my partner had to endure another night of nurse interruptions and trying to sleep on a very uncomfortable cot. He also had to deal with another night of "Cuisine d' COH." The food is unfortunately typical lackluster hospital food, but at least guests can also order meals. All you can eat for a mere $6.00 (cash only)! Also, both patients and guests must use the room phone to order their food! This procedure was invented, the COH staff explained, because it offered people more choices.
After dinner, Dr. Kawachi's PA, Erwin, came by to remove my drainage tube and collection bulb. This is a system that extracts healing fluids from the operation site. Erwin promised me that it wouldn't hurt, and he was correct. It felt like a little worm was being removed from my gut, but it wasn't painful. He bandaged the site and said it looked good to him.
Then Dr. Kawachi appeared later that evening to see how I was progressing. Although his associate came by earlier, I asked why Dr. Kawachi hadn't come by to see me. I think someone relayed this to Dr. Kawachi, or he just came by on his own. Nonetheless, it was very reassuring for me to hear Dr. Kawachi say that my operation went well and that inside my prostate area, he didn't see anything that looked problematic: he expected a good pathology.
Dr. Kawachi also said that I lost barely 250cc of blood, which was as expected: the laparoscopic BNS-RAP is very light on blood loss compared to older prostatectomy methods. I also had a small inguinal hernia repaired and Dr. Kawachi said that he overlaid it with a mesh and that it "looked beautiful," in his words. Laparoscopic hernia repair provides an extraordinarily rapid recovery as opposed to conventional hernia repair.
I commented to Dr. Kawachi that I was sorry that I made him work so late on Thursday the 31st, and he looked at me like I was nuts. "It was a great day, a great day, Mark!" And then I got it: Dr. Kawachi doesn't just perform these operations for a paycheck, he does them because he likes to do them. My encouragement that I had made the correct choice was increasing exponentially.
By the second morning, I'd slept for two long periods of about four hours each. There's nothing like sleep when you're feeling lousy. Around noon, I finally passed gas and was elated. I immediately ordered solid foods: oatmeal, soup, and apple sauce. As bland and simple as it was, it was delicious. An hour later I felt much better, and was getting ready to leave. A final blood test was ordered to assess my cell counts and I took two Percoset to make sure that my ride home was pain free.
The nurse educated me about my new catheter bag (they replaced the original one with a new one) and she provided details about how to care for it. There is not much to do unless you switch bags, and I couldn't see the sense in ever doing that because it can introduce infection and it's a hassle: just plan to use the large one all of the time.
COH also gave me a "to go" supply of alcohol wipes, sanitary/antiseptic towels, and a small catheter bag (if I wanted to switch from the large one), and other supplies. I also asked for a couple of water resistant mattress pads and they gave me a couple of disposable pads. I also had already bought Depends, but these are not needed until catheter removal, which occurs one week post op.
COH's policy is to release you by taking you to your car in a wheelchair. Rolling into the hot sunshine, I started feeling dizzy and somewhat ill. But I figured it was just the Percoset and anxiety. My car is a lower-slung sports car, so it was uncomfortable to drop into the seat: the catheter was poking the back of my bladder. I wish I'd have had a pillow to sit on.
I closed my eyes during the first part of the 30 mile drive home, because I thought I was going to be sick or pass out. By about 20 miles into the drive, I was feeling much better and my dizziness ended. Oddly enough, by the time we got into one of the typical LA traffic jams, I was feeling pretty good.
At home the first afternoon, my urine was pink and sometimes dark pink. This lasted into the evening. I later learned that the catheter scraping my bladder on the ride home may have caused this. I drank lots of water and by evening my urine looked normal. For the first two days, I took only four Percoset, although I probably could have used more. I was very cautious about becoming constipated. Make sure to take a stool softener in the morning and in the evening, even if you're not taking Percoset. I used Peri Colace.
I worried about sleeping in my bed and wetting it, but this turned out to be a non-issue. Generally, the catheter will not leak. You can wear a Depends if you want to, and I usually did and also put on a pair of bikini shorts over the Depends just to keep my testicles supported. I put the waterproof pad under my sheet and hung my catheter bag on the lower rung of a chair that I kept next to the bed. I never leaked and slept well for the most part.
The days flew by, and I was very used to my catheter and bag. I didn't think that the catheter was that uncomfortable, unless I was sitting in a chair for long periods of time. On day six post op, I went back to COH for my pathology report and for catheter removal.
At COH, another blood test was ordered before I was to see the doctor, and it showed that my counts were returning to normal. I was disappointed, however, that Dr. Kawachi was on vacation. I was told that Dr. Kawachi would present the pathology to me and that I would be examined by him. However, the PA, Erwin, did this instead. I later learned that it's normal for the surgeon not to attend unless the pathology is something unexpected.
In my case, my pathology shows that I had two tumors, one on each side of the gland but they were very small, 1% of the tissue sampled. How the biopsy managed to hit both of them is remarkable to me. Nonetheless, the margins were clear, no sign of cancer anywhere else among the tissues removed, although they didn't take any lymph nodes, but overall, the likelihood of anything spreading outside is extremely low.
My tumors were staged as T2c NX MX where "NX" is for the lymph nodes (where "X" means nothing available to test) and MX is distant metastases, which was never considered an issue to begin with due to my low PSA; so both of the latter markers get "X" meaning "nothing" or "not tested." In general, my pathology report was about as good as one could get. My chances of having additional cancer appear in the next 10 years was 10% or less. According to some, it's as low as 1%.
Catheter removal and adjusting to its being gone was good and bad. A nurse deflated the "bladder balloon" (this holds the catheter in place) using a syringe; the balloon was filled 10cc of saline. She also injected my bladder with 100cc of saline. Then the nurse withdrew the catheter slowly and this process didn't really hurt.
Then I stood up and used a measuring cup to empty my bladder. At first, I could not hold anything back; I expelled the 100cc of saline immediately. For the ride home, I put on a Depends and my bikini underwear over them just to keep things from moving around too much. My testicles were definitely black and blue in some spots, but they didn't hurt too much. By the time I got home, I was able to pee on demand, but I still leaked a little. I began drinking water and testing my re-sectioned urethral sphincter. It was quite a revelation to discover that within hours, I was able to pee on demand. I still leaked, but for the most part, I was continent and very optimistic.
Dr. Kawachi had heard from the staff that I was unhappy that he was not there during my follow up appointment. Later that day, Dr. Kawachi began calling me, while he was on vacation, and tried to reach me several times. Late the next evening, he managed to catch me and we had a good long discussion about my pathology report. Dr. Kawachi explained everything in detail to me and my encouragement soared. He said I was roughly patient number 3,500. That seems like an incredible number. He also added that the notion that the C02 caused my intense intestinal pain is untrue. Dr. Kawachi said that he's tried for years to get the nurses to stop telling patients this story without success. Instead, Dr. Kawachi says that the pain is just part of the recovery process; organs have been moved and I've been under anesthesia for over four hours, so bowel function literally stops and has to be re-primed and initialized back into action. It was a great comfort to have this discussion with Dr. Kawachi. I felt like I'd struck pay dirt and won a lottery.
Slowly I began to realize that I'm one of the "lucky guys" whose cancer was detected early. I was lucky because I think I had one of the best surgeons I could have ever asked for; he apparently knew what he was doing. I was lucky, because my pathology report indicates that I'm likely cured of prostate cancer... and, I'm continent.
At about one week post op, I stopped wearing Depends during the day. Instead, I just wear bikini shorts and put a folded paper towel down there to catch drips, which still occur from time to time.
At nine days post op, my urine was pink, showing some bleeding, and I even passed a few blood clots. Sometimes blood was present on stream initiation, but clear afterwards. If I drank more water, though, my urine eventually appeared normal.
On day 10, however, at the end of a urination, I expelled almost pure blood. This was alarming to me, but I drank another large glass of water and when I later expelled that, the urine looked normal again.
The next day I called the COH triage nurse and had a nice chat with Margaret. It turned out that I should not ever be flexing at the end of a urination stream to force out the last bit of urine as one might normally do. Margaret reminded me that this muscle puts about 100 pounds of force on the urethra, which surprised me. She said that the blood loss was not a problem unless it continued and then I would need to be seen by a doctor ASAP. She also reminded me that I should drink lots of fluids and keep hydrated and make sure to continue using stool softeners; straining for either urination or bowel movements is highly discouraged in the early weeks post op. Of course, I told Margaret that this wasn't mentioned in the documentation, or at least, I didn't see it, especially the part about flexing at the end of a urination stream. Since I've stopped flexing, I am not bleeding, although I'm still passing blood clots from time to time.
Margaret also told me that even though I have a "desk job," I should not plan to sit for hours on end at a computer without lying down for a few hours during the day. She reminded me that the pressure from the intestines and gravity pushes down on the bladder and thus on the area that's healing, and this can delay recovery. Margaret also asked me about how much I'd been walking. She said that walking several blocks is a lot, and I should probably take it a little easier. I should carry nothing unless I absolutely have to, and if I do carry anything, it should weigh no more than 10 pounds. I was glad I called the triage nurse: they are there for us to use 24 X 7.
And the news continues to improve: in the early hours of day 12 post op, I had a nocturnal erection. I woke up and was really glad to have experienced this, but because I was concerned about disturbing my healing, I didn't prolong it. I also awakened one morning a few days earlier with what felt like a semi-erection, but the catheter was still in at that time and it felt like an inhibitor, and I did not feel healed. The idea of getting an erection did not appeal to me: I would imagine that I could hurt things down there if I go too far too fast.
One of the things that Dr. Kawachi promised was that his surgery makes the best attempt to spare both continence muscles (urethral sphincter) and erectile nerves. I at first was skeptical about this and whether he knew what he was doing, but I'm beginning to believe he's an expert. Someone told me that Dr. Kawachi has performed more laparoscopic BNS-RAPs than anyone west of the Mississippi.
All I can say is: get a PSA test and have a digital rectal exam and an ultrasound... just for peace of mind. I have a family history of prostate cancer: dad, brother, and so on, and even an uncle and a cousin, so I knew I needed to be examined. I'm also very neurotic about health issues, and I knew that watchful waiting wasn't going to work for me.
Some men who don't know their history find out after the cancer has spread... that's not a good thing, of course. There is also news of new drugs to kill prostate cancer cells, but I am reluctant to wait two or three years for them.
In the end, my only loss will hopefully be "no fireworks" when I orgasm... I'm going to miss that, but they say that the orgasms aren't really that much less satisfying. That is not a big price to pay for being cured of cancer. Note that even radiation will make the prostate pretty much a "dead" gland, and radiation is not a cure in the sense that a BNS-RAP is; radiation is a treatment. So, for me, the choice was clear.
If you decide as I did, to have a BNS-RAP, don't hesitate to call City of Hope in Duarte, CA and ask for Dr. Kawachi. If you are accepted, you might get a list of happy customers (ex-patient referrals) and my name will be on that list. I can unequivocally endorse Dr. Kawachi, his surgical skills, and his bedside manner.
I sent Mark a reminder, as I do to all Mentors about once a year and, like so many others, he's busy getting on with his Life After PCa. Here's what he said:
Hi! Thanks for reminding me. I've been meaning to update... Things are ok for me, undetectable PSA but the erectile quality is still not what it used to be. I would like to write some more details. I'll try to do that soon. Please bug me if too much time elapses before you hear from me. Thanks!
Mark got another a reminder, as I do to all Mentors about once a year. Still working away he said in part:
Yes! I have been meaning to send an update. I actually started writing one a couple of weeks ago. Please give me some time to polish that and send it. I will put this on my list of things to do.
I just had a PSA test and it came back with good news. This is almost four years now since surgery, so that is good. The only downside is the ED, no pun intended. It takes a bit of doing to coax an erection. I find 20mg Cialis to be the best of the ED drugs. It's not as potent at Viagra, but also, then, has fewer side effects, so it seems. There is also the depression and anxiety that goes along with having your manhood almost completely taken away. In optimal settings only, does that manhood come back for a while, accompanied by the old swagger and sense of virility. Although these moments are not hours-long episodes like they used to be, they are at least "something" of my former self. I have to remember that I could have been in another category of PCa victim, and I generally feel good about the state of things as they are now, four years later, since detection and surgery.
It's been about a year since my last update. Last November, I had an abdominal issue for which I saw a gastroenterologist. The gastro doc ordered some blood tests to see if I had liver or other issues, and while he was at it, he ordered a PSA test at my request; it had been about six months since the last one. Everything came back normal, and I discovered that my abdominal pain was a result of using coarse Metamucil which irritated my stomach... totally an unexpected thing to come across. Also totally unexpected was that my PSA was .05. Of course, after four years of seeing <.01 and seeing .05, I freaked out. The gastro doc thought it was pretty good until I explained to him that this is an unusual number for me to see. I then learned, the hard way, that you should really be careful about where you get your PSA test done. Never, ever, ever go to a new lab that you haven't used before without first fully understanding that you may get a different result. So, half-crazed with fear that I was on my way to a biochemical recurrence, I went to a new urologist (because I'd grown less and less fond of my original one for reasons I won't go into). The new urologist tried to comfort me and explained that this .05 result was essentially a "zero" to him, and that I should just not worry about it and just get tested again in a few months at my old lab. Of course, that "few months" went by slowly. I thought about it every day, and some days I imagined myself going through some more treatments, and I worried that all of the trouble, pain, loss of erectile function, etc., that I had gone through up to this point, was wasted. "I should never have done it..." So, then this week, I finally got to see the old lab (took a few weeks because of work and doctor availability to get the PSA test order), and low and behold, I saw those beautiful numbers, "<.01" again. I was very, very relieved, to say the least. Thus, as I near the five-year mark, I feel like a very fortunate guy in many ways. Although I still deal with ED and am having a lot of troubles engaging in sex and getting an erection, at least one thing feels a little more certain in that I have probably made it to an important milestone. July 2013 will be five years for me, and I am going to, perhaps a bit cavalierly of me, assume ahead of time that I've made it. My current treatment for ED is to take about 1/4 of a Cialis pill each day, just to enliven the tissues and enable tumescence, if such should ever occur, to take place more readily. I experience very strong nocturnal erections that I wish I could put to use. As I age, I find it less important, though, to worry about that, so long as things seem to work ok for the most part. I have a minor amount of leakage, and I'm doing my "exercises" at least once daily. Most of all, I feel a lot more comfortable about my choices than I did during the past few months.
July 31, 2014 marks six years since my surgery, and I just got another PSA test result of <.01, or undetectable. It is certainly a good feeling to know that it appears that cancer is not present. My only side effect is the ever present ED, which I treat with small daily/@ other day doses of Cialis. I wish everyone could have this test result. It is not a great feeling to know that others aren't so fortunate in terms of this test result.
I am seven years since surgery and this year my PSA was .01 where with the same lab it was always <.01. I do not know the significance of this, but my GP says he highly doubts that there is any real change. I have not reached the lab to ask what assay was used. I also had a .05 reading at another lab three years ago, followed by the <.01 at my "usual" lab. I don't really know what to make of these numbers and I've read more than I care to have read about the variances and what they might mean. I may get a remake soon or wait, or just do another test next year. Otherwise, I consider myself lucky up to this point. ED and leaking are my only main problems.
Now at almost eight years since surgery, I'm still undetectable. I guess I'm a lucky fellow. Taking subclinical doses of Cialis from time to time, some leakage now and then, the urge to pee seems to strike at odd times. Tumescence is only intermittently "there." Otherwise, all said I'm going great.
Just had my PSA test as I near my ninth year since surgery and my PSA remains <.01 and total PSA is undetectable.