Brent
Eccles lives in Queensland, Australia. He is 45 and his current PSA is 14 ng/ml.
Here is his story:
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 & 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.
| UPDATED |
29
September 2004 |
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 & 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 & "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 & 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 .
Brent's
e-mail address is fatslumpkin@yahoo.com.au
