THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.
As I write this, in January 2014, I'm about 1 month post-surgery. When I first got the news of the high PSA reading I read everything I could get my hands on, including most of the stories here on Yananow and a lot of the posts over in the healingwell prostate forum. Thanks to all of the kind folks who shared their stories and advice - they made a huge difference to us. I'm kind of an analyzer / data person, and I wanted as much information as I could possibly get before making any decisions or undergoing any treatment, so I'm writing this for the folks like me and, sorry, it may be pretty verbose for everyone else. Also, I've noticed quite a difference between my experience and others' experiences from, say, 5 or more years ago, especially as regards surgical pre and post experiences, and I want to make that information available. My story actually starts in late 2012, about a year before my diagnosis, because what happened during that time was a major factor in our deciding to pursue the treatment we did.
By 2012 I'd been having a variety of health problems for years: depression, joint and muscle problems, chronic fatigue, odd sleep disturbances (waking dreams) and intermittent bouts of intense itching, with no rash or other external symptoms, that was frequently so intense that I wasn't able to sleep. The itching was a mystery to all doctors I went to, and I was having to treat it basically by just knocking myself out so I could get some sleep. I was finally persuaded by a friend to go and have a testosterone test. Actually a couple. 235 on one, then 188 on the other since we didn't believe the first. So I started TRT in early 2013. I remember June through August of that year as magical: I had so much energy, my body felt good, my sleeping was great with no waking dreams or itching, and my depression was a thing of the past. During this time I told Deb that I considered the TRT not just life-enhancing but, for me, life extending: I hadn't told her before, but I'd felt so bad for so many years that I'd begun to just wish that things would be over. But with the TRT, live was worth living again.
Then the routine PSA test in August. 8.0. Yikes! Well, that was because the doctor hadn't told me that we were supposed to abstain from certain things 48 hours pre-test, so we ran another test. 4.8. Time for the biopsy and, of course, the TRT was stopped immediately. So I went through second puberty and second andropause in the same year. As I write this I've already had the surgery and I can truthfully say I was much more terrified of the biopsy than I was of the surgery. I'd read the posts that compared the biopsy to "having a BB gun inserted and fired twelve times" and, even though I'm typically a calm person, I think I was hyperventilating as I waited for the test. In my case, a non-issue. I've experienced much more pain having a cavity filled. A little discomfort as the probe was not-too-gently inserted, a couple of not-very-intense pricks as the doctor injected the anesthetic, a dozen sensations of pressure as the needles were fired, and it was over. Deb and I went straight to the pub and I had a couple of beers in relief. I later took a couple of Motrin for the minor pain.
The results were back a week later. The doctor told me via a phone call while I was driving in traffic. Gleason 7 (I forgot to ask which type), 3 cores, both sides. The biopsy was read by Bostwick, so I wasn't inclined to have it re-read. Being 57, in good health, with a father who lived until almost 90, and having a Gleason 7 tumor, we decided that some intervention now was necessary.
Oddly, despite the range of treatment options we're lucky enough to have available now, Deb and I quickly converged on surgery as our treatment of choice. And here's where my 2012 quality of life experience was important: we wanted an outcome where I could go back on the TRT as quickly and as safely as possible. But several other considerations were there also: ease of monitoring for recurrence (especially with the TRT), my (our) need for a clean, decisive outcome, the fact that I have good health insurance now but who knows what I'll have next year, and my desire to save my lifetime budget of radiation therapy in my abdominal region for something else that may come up in the next 30 years. So, for us, a relatively easy choice.
Then we found out what the hard choice was: picking a surgeon. It didn't take us long to come upon the common wisdom that surgical outcome is primarily dependent on the surgeon, nor did it take us long to learn about and become concerned about those possible outcomes: recurrence, incontinence and impotence. It took a little longer to figure out that there are a lot of wannabes out there, especially with robotic surgery. Wannabes that apparently include my urologist at the time, since multiple, increasingly direct inquiries on my part couldn't make him disclose how many RARPs he'd done, or the quantitative outcomes of those surgeries. Or, worse, maybe he just didn't know and, IMHO, any surgeon doing this surgery that doesn't keep metrics, including long-term follow up data, is, at best, irresponsible.
So we shopped around, found 3 heavy hitters in the DFW area, and ultimately selected Dr. Cadeddu at UT Southwestern (the others being Dr. Roehrborn, also at UT Southwestern, and Dr. Lee at USMD in Arlington TX). Dr. Cadeddu trained at Hopkins, has co-authored papers with Partin and Han, including the groundbreaking paper that substantiated the common wisdom mentioned above: proving that, as far as prostatectomies are concerned, surgeon skill trumps technology. He'd learned to do it laparoscopically as well as open, so he uses the robot as it should be used: as just another tool. Selecting Dr. Cadeddu had the additional benefits of being treated within the UT Southwestern Department of Urology, ranked 21st nationally by US News, and within the Zale Lipshey Hospital, which is excellent. As an aside, I'm still amazed that these guys, who are basically rock stars, will spend all the time necessary with you in order to help you make a decision about your treatment and answer any questions you have. They heal people, they teach, they research, they travel, maybe they squeeze a private life in there somewhere, but when they're with you and your fear and uncertainty, they're truly there with you, and there for as long as you need.
We picked the surgeon in late September, but elected to delay the surgery until early December for several reasons: we needed to wait at least 6 weeks after the biopsy, Dr. Cadeddu is booked pretty far in advance, and we had our annual Thanksgiving backpacking trip scheduled and making that trip was very important to me. With Gleason 7a cancer there wasn't a huge time constraint anyway.
Ok, for the information junkies, here's the surgical prep info: not much. Surprisingly for me, after reading a lot of the stories and forums, not much prep at all. No NSAIDs or anti-coagulants for a week before, a bottle of magnesium citrate and only clear liquids the evening before. That's it. No enemas, no Kegels, no special soaps, no making Willie jump, no big deal. I was even allowed to have 8 oz of coffee before surgery, possibly the biggest surprise.
When I awoke I had some pain which was well-controlled by bumping the dose of IV torradol. I had two catheters, both Foleys, one urethral and one suprapubic. The urethral was hooked to a bag, the suprapubic was plugged. I did not get up and walk the rest of that day, nor was I urged to. Had clear liquids and a reasonable appetite. Dozed on and off throughout the rest of the day and that night, awoken periodically by the typical hospital routine of taking blood, vitals, meds, for some reason a suppository at 4 am, and the sound of sleet hitting the window, since Dallas was experiencing the Big Ice Storm of 2013. Deb, thank God, was able to stay in the room and didn't have to drive. I should mention that the UT Southwestern Zale Lipshey Hospital and staff were awesome. I think all rooms are private, they have a couch that makes into a bed, and all food (including food for your family member) is via an on-demand room service model with an extensive menu. The staff, despite problems with shift changes caused by the ice storm, was attentive, positive, quite competent, and had a great sense of humor, especially when it came to catheter removal and 4 am suppositories. Super, super people. So I had a full breakfast and lunch the next day before braving the ice to go home. The criteria for release were pretty simple: walk and fart. The doctor also wanted to make sure I ate lunch before going. So I walked, farted and ate. They pulled the IV and the urethral catheter and hooked the bag onto the suprapubic catheter, rolled up the wheelchair and we were outa there onto the ice.
The ice wasn't too bad. We got home, I was comfortable, and within 48 hours had switched to just 2 ibuprofin every 4-8 hours for remaining pain. I took nothing for pain after 4 days. The 7 small incisions were a little painful when I moved and I had a deep abdominal pain like too many situps for a few days, but nothing that required further meds. I should note here that I felt pretty darn good after 4-5 days and had also read about other guys getting back to normal life a few days after surgery, so I tried to go back to work on the 5th day after surgery. Big mistake. It hurt to sit for very long and I got tired pretty fast. I'd confused not hurting with not needing to take time to heal. It took about 3 weeks for me to get to the point where I didn't get tired suddenly.
And I did have the catheter for 13 days. BTW, thanks to all of those that recommended the tear-away athletic pants with the snaps. A God-send with the catheter. And my hat's off to those that wear a catheter full time. The hospital didn't give me one of those Velcro leg straps that ensure no pressure transfers from the leg bag or a pull back to the catheter. I used tape around my thigh. Bad idea -- a month later and I still have irritated spots where the tape was. Next time I'll buy my own high-quality leg strap. Dr. Cadeddu uses the suprapubic catheter as the long-term catheter. I'm still not sure if it's just for comfort (just having the urethral catheter in for 24 hours gave me a deep appreciation for the suprapubic catheter) or if there's a benefit to early continence.
And that was where my terror lay: continence. Deb and I backpack. We dive. We travel. We're pretty active, and I truly feared the changes that incontinence would bring -- especially complete incontinence. Especially long-term or permanent incontinence. I had an appointment 12 days after surgery and the doctor's instructions were to plug the catheter beginning 48 hours before the appointment and begin urinating normally. No measuring of volumes or anything of that nature that some have described. There were instructions for a variety of what-ifs. As it turned out, I didn't need those instructions. I plugged, waited a couple of hours, then urinated. The end of the urination was pretty painful -- kind of a burning, cramping sensation. So I hooked up the bag and rested for 4 hours, then inserted the plug again. Now the burning sensation was less intense and the catheter remained plugged until it was removed. BTW, removal, which I had also dreaded, was a non-event -- no sensation at all. I had prepared for the removal: pads for the bed and I had a big box of depends for men. Didn't need 'em. A few drops of bloody urine on some small pads I got from Deb for a day or so, then nothing. I'm so extremely fortunate in having complete continence starting day one. I do notice a difference, as I've seen some describe, in that there is very, very little time between the thought and act as regards urination, but I can sleep through the night, enjoy several (or more) beers, or even drive from San Antonio to Dallas straight through with no problems. Don't know if it's luck, the surgeon, or both, but I count my blessings every single day.
That first postop doctor visit was a triple blessing: the catheter was removed, I was continent, and the final pathology downgraded the cancer to Gleason 6, 15% volume, negative margins with no spread to the seminal vesicles or lymph nodes.
As far as erections, though, not much progress to date. Dr. Caddedu doesn't do the immediate "rehabilitation" that I've read about online. He schedules the first rehab visit about 6 weeks after surgery, so I'll have my first visit late next week. So far: get a little activity with direct stimulation, certainly enjoy stimulation, and the dry orgasms are, surprisingly to me at least, as much fun as they used to be. I've detected no nocturnal tumescence but, hey, I've been sleeping pretty well since I have less to worry about now. And I'm not too worried about this: I've pinched nerves before and had them take 6 months or even a year to recover, and I know these nerves (fully spared) have been banged around some, so we'll see.
So two big things happening in the next couple of months: seeing how the rehab works and getting my first postop PSA. If it's zero I'll presumably be able to go back on the TRT, which means this summer I'll be back to the quality of life I was enjoying last summer. Except this year I'll have a deep appreciation for just how lucky I am.
Dave's e-mail address is: db6738 AT gmail.com (replace "AT" with "@")
NOTE: Dave has not updated his story for more than 15 months, so you may not receive any response from him.
