THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.

I'm currently 24 hours away from my post TRUS biopsy appointment with my Urologist, so am quietly shitting myself waiting. Outwardly trying to remain calm for my family's sake, but inwardly I'm very scared.

I'm also angry. I have a family history of prostate cancer - my dad died of it aged 52. I've been having PSA's since I was 38 (the past 7 years). Each time it's been remarked "it's a little high, we'll keep an eye on it". Back then I thought a "little high" was like your blood pressure. It's only after doing my recent research over the past few weeks that I found out just what the limits of PSA's were. I've gone from an initial 2, to 4, to 7, to 9 & finally to 14 in that 7 years. It was only at the 14 count that my GP decided on any action (apart from the "it's a bit high" approach). Knowing what I do now, geez I'm pissed. I've yet to go back and see this GP, I don't think I will, but one of his partners perhaps. Am I right to be angry at this apparent lack of action?? Particularly given my family history??? I know anger isn't going to change my story, but why the hell did he bother ordering PSA's and not perform DRE's????? Any advice on how to handle this little sideline would be appreciated.

How do you tell your kids? I have 2 - aged 7 & 10. I don't want to pull the rug out of their childhood by dumping this burden on them. Whilst I desperately want to see them grow up, finish school, get married & have kids of their own, I also do not want to sacrifice my quality of life & become a huge burden on my family so all they remember is a sick, old father who could do very little with them, pissed his pants all them time and was generally a pain in the bum. Unfortunately this is similar to how I remembered my old man for years after his death. A 17 yo kid should never have to put a bloody catheter/sheath on his fathers penis; should never have to clean up the bed after his father "shits" himself; never have to listen to his dad violently heaving his guts up all night due to chemo etc etc. I recall nights of wishing my dad would die to end not only his suffering, but mine also. I do not want to do this to my kids - guilt like this just doesnt go away. If thats how a 17 yo feels, hows it going to mess with a 10 year old? Any help from this angle would also be appreciated.

Guess I'm feeling morbid. Have checked my life insurance/super etc. Making certain all monies are in joint names. Checking out real estate agents for a "fire sale". Even thinking about where I want my ashes scattered...

Anyway, today is the last day of this life. Tomorrow I start another one. We'll have to see just how long and how pleasant this journey is going to be.

Just back from the urologist. Went in thinking the worse (a Gleason of 11 !!), knowing that any other result would have to be better. Turned out to be positive for PCa - I guess I always knew it would be. Gleason of 4 + 3, mostly left side.

Urologist recommending RP. Getting a second opinion soon. Also getting a CT, MRI & bone scan - hopefully they'll be favourable.

Got a lot of unpleasant things ahead of me - telling my kids is going to be hard. Also telling my mum - she's already been through the whole PCa thing before & is currently 1 - nil down. God I hope she doesn't have to watch me go through the same shit. Work & friends after that I suppose. "whats new Brent?" "Oh, I have prostate cancer" - bound to get the conversation really rolling along. One step at a time.

Cheers,

Brent

Just wish to acknowledge all the supportive emails that have come through. It's all a bit overwhelming & unfortunately contradictory in parts. One thing that has hit me is the paucity of "bad news", which makes me think that I may only be getting input from a survivor population - I guess "dead men tell no tales"!

Have told all siblings, plus those who need know at work. Already had 1 positive out of my PCa - my little bro who had gradually drifted away to the point we barely spoke was really cut up, not only to me but in his subsequent phone calls to my sister (to whom I am quite close). Hopefully we can use this to get back on track.

Have yet to tell Mum, but am arranging a plan with my sibs so shes not alone when I phone.(we live 2000 km away from the whole lot of them). So, currently a Gleason of 7 (does it matter if it's 4+3 or 3+4???), tentatively labelled a T2b & currently awaiting the myriad of scans etc. Let you know when I do!

A bit of news since my last post. Firstly, all my scans were clear, which was a relief. Secondly, after getting a few other opinions and sounding out a few other people, I've given Urologist No 1 the heave-ho and settled for some-one whom I feel a lot more comfortable with. Uro No 1 used his personality as birth control, and to my way of thinking really could not relate to patients. After informing him of my decision to go elsewhere I received a "you'll be sorry" letter!!! Think this vindicated my decision.

Went to another Urologist (non-surgeon) who was great and gave me pretty well all the news (good & bad). Looking back, Uro 1 was all good news (ie. I'll cut it out - No, I dont see any incontinence in my patients. Yep, nerve grafting works all the time when I do it). Anyway, published studies proved otherwise - I guess I was meant to be too stupid to do the research!

Spoken to Radiation Oncologist - very nice lady doc. Even managed to get my case presented to monthly interhospital Uro's meeting - all seemed to concur that an RP was the way to go. So I've found a much more likeable urologist, one whom I will have no problems dealing with over the next 30 years or so, and have surgery planned for mid-August.

Still quietly shitting myself, not only because of the surgery and subsequent side effects, but moreso about the long term success of keeping this PCa beast at bay. Many thanks to all of you who have offered support & encouragement. I'll keep you informed with a blow by blow description of the recovery process!

Cheers.

Surgery was "technically brilliant" according to Uro. Frozen sections were all ok, managed to preserve nerves & margins turned out to be negative on subsequent pathology. Prostate also staged at 4+3 (identical to biopsy). Some small signs of extra-capsular protrusion, which makes me again a tad angry at the dithering of my GP. Had the RP been done 12-18 months ago, the probable lack of protrusion & PSA < 10 certainly makes a better prognostic indicator.

Must admit the surgery was a doddle. Came back from theatre as high as a kite, alternatively speaking in gibberish, singing songs of my wayward youth or sleeping. Up next day for a shower and small walk without too much pain - in fact asked for the PCA to be disconnected & managed with panadol. The morphine based PCA just sent me to sleep and "fuzzed up" any thought processes.

Improved over the week, although had a temp spike & a bit of oozing from the wound which lead to antibiotics being prescribed & an extra night in hospital. Ordered in a pizza on my last night, so must have felt ok!! Catheter came out on the day of discharge & had my worst fears realised - absolute incontinence. I was certain I'd be one of those with a minor dribble for a week, then completely dry thereafter - I wish!!

Arrived home & could manage the stairs ok & even drive. Still took things very easy that first week, then increased activity. Shared a bottle of red on my 2 week RP anniversary! The continence side of things have certainly improved, but still nothing like I had hoped. Pretty well dry at night & can get to toilet first thing in the morning ok. Across the day I'm ok when sitting or lying & can even contract every muscle known to man and waddle to toilet after getting up. However when walking or even standing I'm dripping continuously. I'm hoping it will be better at 12 weeks. On the bright side I can even have 6 beers (if I'm sitting) without any embarrassment - well I did once! Despite the nerve-sparing, there ain't any movement re potency at the moment. Plan on returning to work @ 7 weeks, but feel I could have gone back a few weeks back.

So in summary - the surgery was well tolerated & successful as measured by the pathology. Physical recovery has been good. Side effects of incontinence & impotency are a bother, in my case particularly the incontinence. However it is slowly getting better, but not soon enough for my liking. PSA follow-up is getting closer, but whats the point in worrying about it, it's something that I can't "will" to be 0, no matter how hard I try. The other important bit is the family - I reckon they did ok too.

Just a quick update. I've just survived my first post-surgery PSA! The result was non-detectable PSA which is bloody great.

I'm now 16 weeks post surgery, PSA <0.1, completely dry at night and just a few dribbles during the day (later in the day). Also a bit happening in the potency area too - but nothing to hang ones hat on!!! (yet)

In summary - all is well - lets hope I clear the next hurdle in another 3 months time. But until then - every day is going to be "cancer free" - I ain't even going to think about it, which to me is probably the most important thing. After being in the "PCa Tidal Wave" for a while now, it's great to be spat out the other side, if only for a few months. I'm going to enjoy it. Merry Christmas to all.

Just had my 9 month post-surgery PSA - undetectable!! Makes 3 hurdles in a row. 99.9% dry, but erectile function could be better. Probably have a sleepless night once a fortnight playing "what ifs" re the PCa (eg. what if my PSA rises, what if I had done nothing etc). Apart from that I'm still having most days as "cancer free".

Have resumed pretty well all of my "old life". Back to drinking too many diuretics (coffee & beer). Stopped regular exercise. Ahh, may be when Spring re-appears I'll turn over a new leaf????!!

Just had my 12 month anniversary since the RP. PSA still undetectable which is great. Completely dry. Erectile Dysfunction, but steadily improving.

Just need work on general fitness & caffeine levels!

2 years today since my RP - doesn't time fly! Right now, I'm feeling absolutely "knackered" after playing golf; I should have used the carts instead of walking!

My update: PSA readings are fine. Even asked for the more sensitive test which last gave an undetectable <0.02 reading. Next one in October. Continence - no problems. Erectile function - not as good as I hoped, but the odd tablet certainly helps. Yes, this is a pain in the arse at times, but given a choice, I'd take continence over erectile function every time. Psyche - not sure, I still wake up at night playing the "what if's". Part of me is still expecting the worse, and merely waiting for the PSA to start climbing. Fitness & Health - hmmmm, I had vowed to cut back on coffee & beer, plus start exercising more frequently. Well I did purchase a new set of golf clubs and have been wielding them semi-regularly, so I guess 1 out of 3 aint bad!

To all those at any stage of their journey with Prostate Cancer, I wish you the very best.

Three years already. Can't believe how much my kids have matured in that time, and I certainly appreciate every day I spend with my family.

My PSA is still undetectable, continence good, but ED persists. Got to admit that I probably would have taken that option had I been offered it pre-surgery. Looking forward to five years with no PSA, but I'll take it 1 blood test at a time.

When my four year anniversary of my RP passed by in August I was meant to go and post at YANA. Sort of got busy. My Five Year Plan of saying No lasted only about 2 and a half. And by not saying "No" often enough I find myself busier than ever doing the things I promised I would cut back on!

Anyway - I'm fit and well - in fact I actually embarked on a fitness regimen after years of procrastinating. I've worked my way from couch potato to just plain unfit!

My four year PSA was undetectable - always good news. ED persists - some days are better than others, Viagra/Cialis help a tad. No incontinence at all - which was my biggest concern.

Guess I've also stopped having the "worries" at night when all one could think about were the "What ifs". It's been a long journey - but I plan it being a lot longer. I said before that it's nice to be spat out the PCa tidal wave - those thoughts are very much still the case.

I'll try and remember 12 month updates (at least) in the future.

Made it to 4 1/2 years post RP, then the PSA became detectable again. Was so close to that magic 5 year mark too...

Meeting with radiation oncologist soon to hear what he has to say. Might just sit tight for a few months just to see what the PSA doubling is, and whether a lifestyle/diet change is in order. I think it's a little easier this time around - the first time with the diagnosis/treatment etc was just a blur of panic & information overload. Kids are now 5 years older which helps too.

Will let you know when I do!

A rise in PSA led to scans which located a sinister site adjacent to the prostate bed. Decided on radiotherapy which went well. All post radiotherapy scans show the site as having disappeared completely.

That's the good news. Unfortunately my PSA keeps rising (now 1.40 ng/ml) , not too sure from where. Scans yet to locate any hot-spot or other. More scans scheduled soon. Docs currently contemplating exactly when hormone therapy should commence. I was hoping this would be sometime 2 years away, but it looks to be a lot sooner than I had hoped.

Be nice to get another 5 easy years before any nasty complications - but them bridges will be crossed when I get to them - not before.

Still upright and will update soon.

A lot of water under the bridge since my last post.

Placed on Androcur with no problems. PSA plummeted to barely detectable. Informed prognosis proportional to fall in PSA. 18 months later (PSA still <0.1) I hurt my back - I thought was just an old back injury rearing its ugly head, but doc thought it had better get checked out. Dunno why as the papers I read suggested the sensitivity of back pain in the detection of PCa bony metastases in PSA less than 10 as negligible. Well guess what, I'm in the negligible category. Can be the 1 in 10,000 when it comes to this, but not lotteries!

Bony mets in spine & rib treated by palliative radiation. Palliative is such a nice way of underlining the fact that the docs have given up and we're shuffling along to the next department. Only read 1 paper to date which said median or mean (can't recall which) survival following detection of bony mets = approx 1,000 days. [The Median Is Not The Message is the piece by Stephen J Gould that I read many years ago and which helped me understand how important the range is in any study. Clearly many of the men on Yana, including me, have survived bone metastasis longer than 2.75 years or 1,000 days. I was told of my metastasis in July 2007 - five years ago. so I'm already at twice the median.] Already used 40 of 'em up. Hopefully will be enough to see kids through school, plus I'll get a "gold star" next to my name on here as a 10 year survivor!!!!!. I feel a 10 year fighter would be more appropriate, and right now I'm sick of fighting the good fight and getting nothing but low blows and cheap shots in return.

Been a long time since I ventured here. Guess folks presume 2 things - he got better, or he got worse! In my case its the latter.

Been fighting increasing PSA which showed initial response to Androcur, but then moved to Zoladex & then with Nizoral tossed in about 15 months ago. And every now & then a bit of palliative radiotherapy to put out a spot-fire. Had 3 lots earlier this year, the last to target a lesion in L1/2 which made life difficult due to leg pain & some tingling in the toes. So far I've always responded well to radiation. Had me about 4 months relatively pain free, but the "troubles" have returned. A bone scan put the hot spots exactly where I knew they'd be. Awaiting more radiation, but relying on a bit of pain medication to get me through most nights.

Medical Oncologist talking about chemo soon - if I can be bothered. I'm not sure I can. Its always been quality not quantity for me. Too many painful demons from my past to want to inflict any more pain/suffering on my family.

So, prognosis not good, but probably made it longer than I thought I would. Still not happy being labelled a "Survivor" - a "Sufferer" would be more accurate.

Chemo (taxotere) commenced in March. Worse 3 months of my life. Worst side effect was a low Hb and associated breathlessness and fatigue. Added to the nausea associated with chemo, it was no fun. To make matters worse, the chemo didn't work! PSA unchanged, and need for regular blood transfusions which suggested significant bone marrow involvement.

Next step, Abiratarone. Lovely (& expensive) drug. I experienced no nasty side effects and my PSA fell by a point or 3. Still requiring blood transfusions with Hb hitting the 70's a couple of times.

Final step, carbataxol. Related to taxotere, but slightly different. I've done 2 cycles now and tolerated it better than taxotere. The odd vomit at the end of week 1, and a rumbling gut are the main side effects to date. PSA down another few points, and it is now the longest I've gone without need for a blood transfusion for ages (currently 13 days). When this fails, or I fail it, I'm going to pull up stumps. No more treatment, just enjoy each day as it comes.

The current doc has 4 months in the pool; my aim is seeing son graduate in November, then maybe Xmas. Currently filling in a mountain of life insurance/superannuation paperwork to access funds early. Intrigued by the insensitivity of some forms - you need a sense of humour

Actually, there is my sign off line to this website, and to all those men and families battling prostate cancer - keep your sense of humour.

adios.

Brent's e-mail address is: fatslumpkin AT yahoo.com.au (replace "AT" with "@")

NOTE: Brent has not updated his story for more than 15 months, so you may not receive any response from him.