THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2018 SO THERE IS NO UPDATE.
Who am I? : I'm a early 50s guy with two mid-teen kids - I'm intelligent, professional, well travelled, with a few ex-wives. My original degree was in Science, but that was a long time ago. I live in the frosty Alpine climes of Canberra, Australia - the nation's capital. I drive too fast, eat too much, drink too much, trust and love perhaps too easily and laugh whenever I can. It has always been my intention to enjoy life to the full. I've seen too many abstemious friends and colleagues die suddenly and early while postponing their pleasures for retirement.
A potted prostate history to date : Diagnosed at 49 with a small (0.2ml) low grade (Gleeson 6) tumour. I'd gone along to my GP to get some baseline medical stats intending to do some health and fitness turnaround work. A marginal PSA (4.2) led to a 24 needle biopsy. One needle was positive. PSA was closely monitored over the next two years while I mulled over my options and dealt with incidental personal dramas (divorce, death in the family, job changes etc). A recent scan showed to tumour had jumped to 5ml and there was now probably a second tumour, and the PSA jumped to 8.0. It was time to move. Two months on and I'm lying in bed at home with six healing holes in my belly, with a sore dick, sore arse, wearing a nappy and feeling, all things considered, that I'm doing pretty well!
Early Daze : The Doc shuffled the test results on his desk, reading over them quickly again before announcing that "We did a 24 needle biopsy - although most were clear one came back positive for cancer and two adjacent ones had suspicious cells". He went on to explain their Gleason score (6) was low - any lower and they would not even be considered as cancer. [See Gleason Grades] While my head spun he then smoothly segued into treatment options saying that in my circumstances, particularly given I was so young, radical surgery was the recommended choice, but given the size and score of the tumour if I wanted to take some time to think about the treatment options - even a year - that should be fine. He then started to go through the possible adverse outcomes of the surgery - impotence, incontinence, fistula, and rounded it out with a if worst comes to worst we can always do THIS - flourishing a blow-up penile implant. The idea of having my dick filleted to insert an implant was not immediately appealing. [Doctors often fail to mention what are sometimes termed as Minor Side Effects - see What Were You Told?]
By now my head was spinning. I arranged to come back in a few weeks to talk things through again. My wife's view was straightforward - just get it cut out. She didn't mind if I ended up impotent. I suspected that was true - sex had been much more important to me in our short marriage, but in any case this was a decision I had to make, not anyone else.
For most cancers immediate removal or aggressive destruction by some other means IS a "no-brainer", but prostate cancer is a more complex beast than many, often not progressing at all, sometimes suddenly leaping away with no warning, [there is very little evidence for a Gleason 6 diagnosed prostate cancer to move at any great speed] and every treatment option has big potential side effects. Like impotence. Especially impotence. And being able to get a good serviceable hard-on is mighty important to most guys, and I was no exception. Far from it...
The Biopsy: Biopsy is about the only way of reliably finding tumours AND getting a bead on how aggressive a tumour is. Essentially in my case it involved shooting 24 hollow-core needles in a grid pattern through something the size of a golf ball, through the wall of your rectum If your doctor is like mine he/she will downplay what it is going to be like afterwards. "you may notice a tinge of blood in your semen or urine after the procedure...". No shit superman. For the next month you cum dark red blood and that's also what oozes from your dick every time you take a dump! "tinge" indeed.
Anyway this diagnosis was a complete shock - I had fully expected the test to come out clear. So now it was time to do what I always do in this sort of situation - research and analyse.
The treatment choice: I spent two years researching and watching the tumour, and eventually HAD to move when the tumour size jumped from 0.2 to 5 ml on the MRI and the PSA doubled to 8. For me brachytherapy was not really an option (already too much urinary restriction), I didn't like the sound of radiotherapy because I was told the long term impotence outcomes were essentially the same as for nerve sparing surgery, and one initially attractive option - HIFU (High Intensity Focused Ultrasound) - I was advised against as my urologist said he was seeing too many post procedure recurrences.
Post-prostatectomy dick: You wake up from surgery with holes in various places and sizes (depending whether the surgery was robotic, laparoscopic, open etc) and with your dick taped to a hairy section of your upper thigh, with a thudding great catheter running out of it. This will be both your friend and your ball and chain for the next little while. You will learn how to attach and detach leg bags, night bags, make sure you remember to turn stop-cocks on and off, and possibly deal with a blocked catheter. You may also have a drain in one of those holes - a pipe which allows excess blood or fluids to drain into a bag - better out than in!. The pipe inside you will surprise you if you see it when it comes out - about 20 cm long.
I had a slightly weird reaction with my catheter - every time anything moved in my lower bowel it would trigger sympathetic peristaltic waves in the urethra clamping down uselessly and very painfully around the catheter - like the pain of passing a small kidney stone. This continued ~5-10 times a day for the 10 days I was catheterised. I had faint echoes for a few days after it was removed. Anyhow despite all my heroic pelvic floor exercises [aka Kegel Exercises] pre-op I had basically zero bladder control once the catheter came out. Starting from scratch again, and in the meanwhile the piss is everywhere. And the "incontinence aids"? Good grief I'm sure they were all just second hand thought bubbles from people whose hitherto career aims was female sanitary pads or nursing home "incontinent from both holes" pads. Given all the retired engineers who must have had this condition I can't understand why they haven't risen up and come up with a product which is actually REALLY designed around urinary in continence only and specifically having regard to the male anatomy and physiology. But I digress...
The post-operative situation: After the operation and especially after the catheter has been removed you will notice a few things about your dick (other than the unwelcome and uncontrolled release of urine...) It hurts. aches. Like it has been hit by a mallet - but perhaps that just my experience :-) Hardly surprising really you had a oversized plastic tube up it for a week.
Your dick - it's shorter and smaller than it used to be. The smaller may be due to the renowned (but hopefully just initial) reduction in arousal and enlargement that usually accompanies this procedure but the shortening is another story. The surgeons are coy about it, and will sometimes blame patients for nor being vigorous enough in their post op rehab work but the truth is much more straightforward. If pressed they will admit that "penile retraction" can occur, but in reality it is almost an inevitable consequence of a radical prostatectomy. The prostate sits neatly between the bladder and the penis - when you slice it out and reattach the bladder to the urethra you have lost 2-3cm of urethra. Given that the bladder is cradled in the by now renowned pelvic floor muscles something has to give in this heroic tug-of-war and it is your dick. I guess the surgeons think that if, as well as having a substantial risk of losing sexual function patients stand (pardon the pun) to lose an inch or so of their "height" that more will avoid surgery. Maybe so, but I'm afraid I'm all in favour of transparency and informed decision making.
It's only a couple of weeks since the op. The bladder control issue is depressing but ... I've already come a couple of times thru self stimulation. As they warn you, you "come dry" but it was a relief to find I still could, and still wanted to. No sign of any erection yet but, hey, one small step for a man... ;-) I've tried the pump - hmmmm.... Not convinced,,, we shall see. [Some doctors believe in the Use It Or Lose It theory of early stimulation.]
I went back to see my surgeon six weeks after the op in good spirits. I was generally recovering well from the op itself and when I'd asked his office about the path reports they said he would have called me if there was any issue so "no news is good news".
We had a pleasant chat and after a while I raised the question of the Gleason score etc of the tumor. He glanced at the path report and got more somber. "Hmm, yes, The cancer had almost completely taken over the prostate any was multifocal - they couldn't say how many tumors there were because it was so multifocal. Primarily Gleason 6 with a small amount of 7. Oh and there were a couple of tiny areas of breakout, both about 1mm, on near the neck of the bladder where there's effectively no capsule, so it's overall now a T3 stage. The breakouts are in areas we cauterize during the op so if there were any stray cancer cells we may well have already killed them, but in a young chap like yourself it would be best to do a precautionary course of radiotherapy ASAP."
I'm now 29 treatments down out of 33 so almost there and thankfully with little in the way of side effects. Still no erectile function and frankly whatever potential may have been left post-op has probably been severely degraded by the radiation. Other temporary solutions such as penile injections cause little reaction other than pain (from the chemicals, not the injection itself). Life without penetrative sex looks quite likely at this point, but I still hope....
Incontinence is a daily reminder and impotence a major issue - leading to depression. My only remaining option at this point to regain sexual function is an implant, but without $20k spare sitting around that's just not going to happen. So we just keep passing the open windows ...
Due to increasing continence issues I underwent a routine cystoscopy to see if there were any strictures for example. while there was a minor structure at the anastomoses site, extensive radiation cystitis was noted. Post-operatively there was severe incontinence, pain and hematuria - the cystoscopy had stirred up the radiation damage massively. Four months down the track this has improved only marginally, and I'm facing the possibility of needing an artificial sphincter operation. And as a mid-fifties maLe I'm trying to establish a new relationship while I have no erectile function and I constantly leak. Oh joy...
In July-August last year I had a series of 3 hospital admissions in acute retention - blood clots from the radiation had caused the bladder to block, requiring increasingly painful catheterization. After the third they cystoscopically carried out some burning away of the bleeding spots, and things gradually dissolved.
In March-April the following year I underwent 30 hyperbaric oxygen therapy treatments to reduce some of the radiation damage to the bladder. On 1 July 2016 I underwent a routine cystoscopy as part of a work-up to implant an artificial sphincter - during this procedure no significant issues were noted and the improvement to the bladder radiation damage was also noted. Over the following 6 weeks I had a series of catheters as each time it either blocked hours after it was removed I went into retention again. Eventually it was decided to put in a supra-pubic catheter (SPC) to "rest the urethra" so I had a tube out my belly and a leg bag. After a while the urethra stopped producing anything. The surgeon did a cystoscopy to investigate - conclusion is "your urethra has areas that are dead and dying, there's no treatment. Your SPC is going to be permanent".
To be continued....
In July-August last year I had a series of 3 hospital admissions in acute retention - blood clots from the radiation had caused the bladder to block, requiring increasingly painful catheterisation. After the third they cystoscopically carried out some burning away of the bleeding spots, and things gradually dissolved.
In March-April the following Year I underwent 30 hyperbaric oxygen therapy treatments to reduce some of the radiation damage to the bladder. On 1 July 2016 I underwent a routine cystoscopy as part of a work-up to implant an artificial sphincter - during this procedure no significant issues were noted and the improvement to the bladder radiation damage was also noted. Over the following 6 weeks I had a series of catheters as each time it either blocked hours after it was removed I went into retention again. Eventually it was decided to put in a supra-pubic catheter (SPC) to "rest the urethra" so I had a tube out my belly and a leg bag. After a while the urethra stopped producing anything. The surgeon did a cystoscopy to investigate - conclusion is "your urethra has areas that are dead and dying, there's no treatment. Your SPC is going to be permanent".
To be continued....
Ivan's e-mail address is: travezzer50 AT gmail.com (replace "AT" with "@")
NOTE: Ivan has not updated his story for more than 15 months, so you may not receive any response from him.