Ivan Templeton lives in ACT (Australian Capital Territory) Australia. He was 49 when he was diagnosed in 2009. His initial PSA was 4.2 ng/ml, his Gleason Score was 6 and although he does not give his staging, it seems from his narrative he was staged T1c. His choice of treatment was RALP (Robotic Assisted Laparoscopic Prostatectomy). Here is his story.
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, 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 7 weeks since the op. I've now got the pathology report and it is NOT good. The tumor was multifocal, had increased To Gleeson 7, took up most of the prostate and has a small, focal extra capsular extension. Radiotherapy (daily for six weeks, starting in 3 months) is now on the cards as a precaution.
The bladder control issue is depressing but .improving.. 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 spontaneous erection yet but, hey, one small step for a man... ;-)I've tried the pump - hmmmm.... Not convinced,,, we shall see.
Also tried the penile injection - 3 hours of PAINFUL erection. Will halve the dose and try again