Harold,

As several have said here, welcome to the club no one wants to be a
member. Your story is well written and very relatable. I am 60 yrs old
at the moment although I'm 3-1/2 years into this crazy battle. It
sounds like you're doing all the right things - there is so much
information to absorb and our first instinct is to take action. Good
luck and keep us informed.

Rich

(snip)

The healthy prostate gland produces prostate-specific antigen. Questions
arise when the amount detected by test exceeds that "normal" amount.

A 76cc prostate will express 5.016 ng/mL of normal or benign PSA. The
formula is gland volume x 0.066 = benign PSA. See Strum & Pogliano _A
Primer on Prostate Cancer_ and/or the Prostate Cancer Research Institute
(PCRI) at
http://www.prostate-cancer.org/education/riskases/Strum_StrategyOfSuccess2.html

In this case it appears that Harold's excess PSA was roughly 1.7 ng/mL.

Unless the "team" had at least one expert prostate pathologist on board,
I would recommend that the Gleason score be validated by such an expert.
It is a "second opinion" and is doubtless covered by insurance and
Medicare. In any case, the cost is only about $350, which is a good
price IMO for the assurance that the Gleason score is reliable as
confirmed by an expert. Why is this important? Because everything that
is done from this point forward is absolutely dependent upon the
accuracy and reliability of that score.

Here is a list of such labs:
Bostwick Laboratories [800] 214-6628
Dianon Laboratories [800] 328-2666 (select 5 for client services)
Jon Epstein (Hopkins) [410] 955-5043 or [410] 955-2162
David Grignon (Michigan) [313] 745-2520
Jon Oppenheimer (Tennessee)  [888] 868-7522
UroCor, Inc. [800] 411-1839

They will require that the local samples (which in civilized
jurisdictions are the property of the *patient*) including the paraffin
block be sent to them. This can be arranged.

Anecdote (take it for what it's worth): My second opinion on my second
biopsy was done by Bostwick. Verrrry interesting result, which the local
hospital lab failed to address.

If the cancer is "encapsulated" I have to wonder why the excision of
lymph nodes. That sounds as if the uro suspects that they are involved.
Did he explain the side effects, such as  possible lymphedema?

(snip)

Maybe, maybe not. Sorry to seem pessimistic; or is it realistic? Roughly
30% of RP patients recur and require further treatment (tx).

And that will remain uncertain for some months. Take one step at a time
and have Plan B ready.

(snip)

Caution: We must not rely upon the experiences of others as any forecast
of our own results. We are all different, especially with regard to our
disease. What helps Harold might harm Steve. And vice versa. Personal
anecdotes should be taken with a very large grain of salt.

Regards,

Steve J

"As a physician, I am painfully aware that most of the decisions we make
with
regard to prostate cancer are made with inadequate data."
-- Charles L. "Snuffy" Myers, MD
Medical oncologist. PCa survivor.

Exactly where I was three years ago ... stuff happens, you deal with it,
more stuff happens, you deal with that, more stuff ... No point getting
too far ahead of ourselves; hypotheticals could drive ya nuts. And, yes,
it's great to find docs who understand that we have lives to live and
schedules to live 'em on even if we *are* old retired farts.

I.P.

Harold ,

Good luck to you. I'm coming up on two months post op and fresh from
much of what you are going through.  I too opted for surgery,
specifically robotic surgery. I was extremely pleased with small
incisions, no blood transfusion and fast recovery. The catheter ended
up being the worst of it. If you explore it, I would urge you to find
a surgeon who specializes in it and has a good number of procedures
under his belt.

I've been fully continent since 10 days post catheter removal and
using Zoom's terminology, on some days I'm 40% wood without any
medication. Start thinking Kegels :)

Hello, Harold:

Thanks for the the story.  Everything you wrote sounds pretty much
within the usual bounds.  And you've got a great attitude about it
all.  One of my colleagues here was diagnosed a month or so after my
LRP, and has had his surgery  in turn back in May.  He was in much
better shape physically than I was, and his recovery has been much
more rapid, with fewer side effects.  Makes me wish I had done more
before the surgery.

My wife has kept a stiff upper lip throughout, but I know it's gotten
to her at times, even though she tries not to show it.  It's just a
measure of how much they love us.  And now that I'm through it and the
results are encouraging, she's a lot less stressed.  So, it's
temporary.

Good luck, and please keep us posted on how it all goes.

--charlie

Harold,

A couple of suggestions your may want to consider (if you aren't already):

You didn't mention if your surgery was via standard incision or robotic.  If
it's available, you should go with the robotic since the incisions are minor
and recovery is much faster and virtually pain-free (at least mine was).
And being less intrusive, there is less chance of severe bleeding.  I assume
when you allude to lymph-node removal, your doc is talking about sampling
the nodes for in-surgery biopsy (as opposed to removing the nodes in their
entirety).

As you are getting toned up for this, you should be sure to include an
increasingly rigourous Kegel exercise routine (unless your hernia situation
precludes those exercises).  Post-surgical Kegel exercises can be critical
to your post-surgical incontinence recovery, and getting the muscles toned
up in advance helps even more.

Continence and sexual functions vary widely by individual, both in terms of
extent of recover and length of time involved.  Your approach of
take-it-as-it-comes is very reasonable and wise,  Best of luck.

I'm a little behind in my reading, Harold, but welcome to the club!

Hi Harold,
You and I have VERY similar statistics. Gleason 6 pre-op, 60 years old
-  I'm 12 weeks out from my RRP w/ PSA now undetectable. I also had
some prostatitis in my 40s & 50s & had a 72cc whopper that was
starting to give me all the classic BPH problems. My uro with 2000
prostatectomies in his resume strongly suggested radical rather than
DaVinci, because with our size of a gland he could do a better job
bringing it out through a larger opening rather than the smaller
robotic incision. I'm very glad I went with a radical because he did
see &/or feel cancer at my margin, so he took extra tissue in that
area. My recovery has been very good & I lucked out being dry the day
of catheter removal. My wife was with me every minute for a week after
I came out of the recovery room, so I'm eternally grateful for her
love and help through it all. The great cosmic irony is that this
cures your BPH! You MUST read through the following famous
Post-Prostatectomy-Paraphernalia list that our fellow club member Joe
Price has compiled for the newsgroup - I include it because it, more
than any other single thing, helped me through this ordeal. Of course,
the Scardino & Walsh books too, but this list was invaluable!
Good luck my comrade. We're here for you.
Z.
Age 60 PSA: 4.8 pre-biopsy
4/5/07: Biopsy: Gleason: 3+3, Stage T1c
5/22/07: RRP, Pathology: Gleason 3+4, Stage T2c
Positive margin, both nerves spared, no lymph or s.v. involvement
6/4/07: Cath out, dry, no leaks.
7/05/07: 1st post-RP PSA: undetectable (measured <.04)
............................................................................

Post Prostatectomy Paraphernalia by Joe Price:
I compiled this shopping list of paraphernalia that would be good to
have
on hand when you get back from surgery. I started the list in
September
2001 before my own operation based on responses I got to a request
here for
suggestions.
Thanks to all those who helped put this list together way back then.

Since then I have re-posted periodically it to make it available to
the
newly diagnosed. Occasionally, additional items are suggested and I
try to
remember to add them next time I post this message.

One thing I would like to make clear up front - the list is exhaustive
because I have included almost everything everyone has ever suggested.
This
does NOT mean you should run out and buy everything on this list. Some
of
these items are in the "luxury - nice to have" category and others are
specific remedies some individuals found they needed for complaints
that may
have been specific to them.

Read through the list and at least think about what is here and what
its
purpose is. Get creative in thinking how you might adapt something you
already have around the house to function in the place of some of
these
items.

Certain activities, not strictly hardware items, were recommended
frequently. I've included those activities as well.

I am not a doctor and this is NOT medical advice!  (However, I AM a
geologist so maybe this qualifies as a form of geological advice...)

Hardware:
- A pair of oversized basketball type warm-up pants with snaps or
zipper up
the leg (to allow discreet access to the catheter and bag). Get a pair
that
is large enough to accommodate the large (night) bags and smaller
(walking)
bags - that will be provided by the hospital. A dark colour will be
less
likely to show wetness from any accidental leakage compared with a
light
colour. Fast drying material ("parachute material") is recommended if
possible. This is not essential.
-  I have found convertible hiking pants (pants whose lower leg can be
zippered off to create a pair of shorts) to work wonderfully well
while
wearing a catheter. This type of pant also has a side zipper on the
lower
leg, which makes leg bag access a breeze. You can open the upper
zipper (the
one that runs around the leg) part-way to switch bags and let out the
hose
to the large drain bag.
- A five-gallon plastic bucket is very useful at night as a receptacle
for
the large night bag. The bucket may become your constant companion
around
the house. Get a square one if you don't already have something else.
- "Invalid" cushion (looks like an inner tube)
- Antibiotic ointment/lubricant (Polysporin, for example) for where
catheter
exits (some had this supplied by their hospital). Some recommend a
water-based lubricant such as KY Jelly but that tends to dry out
quickly.
Get gauze 4X4 pads to apply ointment.
There has been some debate about the best fluid to use. You want
something
slick, long lasting and certain not to damage the tube. It would be
nice if
it were also antibacterial. I used Polysporin and Erythromycin with no
problem. Polyfax ointment is a name to look for if you live outside
North
America.
- Alcohol swabs to clean the catheter at the tip of the penis (single
use
wipes designed for cleaning the skin before an injection).
- A pair of slippers or sandals or loafers.
- Over-the-counter stool softener
- Get a haircut and trim your toenails before surgery
- Several people recommended buying, borrowing or otherwise acquiring
the
use of a reclining chair.
- Place a chair by the bed with the back facing the bed. Use the chair
as a
bedrail to help you get up. Use the seat as a bedside table to hold
some of
the things you want to keep handy. I would STRONGLY suggest you test
this
out BEFORE you go to hospital to be certain it can take your weight as
a
handrail before you rely on it post-surgery!
- A pillow to hug early on to ease pain in laughing etc.
- A pillow to put between your knees while sleeping on your side.
- Grab bars in the area of the commode (don't use towel racks for grab
bars!)
- Use a plastic coat hanger stuck between the mattress and box spring
to
hang the bag from or just place it in the bucket on the floor.
- Nice baggy, soft sweat pants or warm-ups - oversize with drawstring
if the
weather is warm inside the house or out of doors
- A soft bathrobe belt to make a shoulder strap to suspended the big
bag if
you prefer it to the "walking" bag.
-. Silk/nylon/rayon boxer shorts for the period you have the catheter
- A plastic sheet to go under the bed sheets and protect the mattress
once
the catheter comes out. A large plastic garbage bag might work in a
pinch.
- Have enough easy to prepare food on hand for 2-3 weeks
- Book(s) you've been intending to read
- Fresh batteries for your TV remote
- A cordless phone and up-to-date phone list
- Some big baggy mesh shorts (in summer)
- Suspenders may be helpful, in place of a belt
- Two dozen inexpensive white washcloths (in a big bundle)
- Some of the little plastic, stick-on hooks to put in the shower
etc., for
a place to hang the bag or simply the pail, placed outside the tub.
- To help stave off possible urinary tract infection, either Ural
(seems to
be an Australia/New Zealand over-the-counter drug) or a supply of
cranberry
juice. They work in different ways to achieve the same thing.
- A watch or interval timer to remind you not to stay sitting too
long. The
small kitchen timers would work for this and to prompt you to get up
periodically at night if you need to do so.
. An electronic thermometer (about $10) for keeping track of your
temperature for a couple weeks postoperatively.
- A walking stick may prove to be helpful.
- A safety bench (maybe a plastic lawn chair?) for the shower
(sometimes
you're a little light-headed when you first come home and it's nice to
have
something to sit on)
- A raised seat to put over the toilet (as an alternative, or in
addition
to, grab bars)
- A grabber for picking things up if you drop them so you wouldn't
have to
bend down.
- If you have the hardware, fill up a MP3 player with your favourite
tunes &
use headphones to help "drown-out" the hospital noise.
- A "toilet seat lifter". I would be inclined to bend a coat hanger
into a
hook that I could work under the lip and lift, but there are probably
commercial step-on type mechanical devices akin to garbage can lid
lifters
out there. Just use a stick or bend at the knees, keeping the back
straight.
Heck, just leave the lid up for a few days.
- One person indicated his hospital made him wear a pair of
anti-embolism
stockings the whole time he was there. He bought another pair when he
went
home and suggests considering doing the same.
- Drinking straws - you will want some for the first week.
- Plastic cups - they're lighter than glass
- Extra pillows - for sitting up in bed and as arm rests at night and
for
the couch.
- Velcro Foley straps - the walking bag can slip down your leg and
pull on
the tube.
- A current phone list - one of contact people who must know, one of
friends
to come visit you, walk, and meals, shop for you. Spread the burden.
- A few woman's (not a few women's- get them from one woman) menstrual
pads - don't be shy, the big ones, they're smaller, cheaper than
incontinence pads and can be added to the diaper and
changed more often.
-Travel bag - like a baby changing bag for when you go out or the keep
women's pads in your pocket.
- Viva paper towels - to help when wet - they're soft.
- Toilet wipes - the first few times they're nice, along with baby
wipes for
everything.
- To deal with the rash and itch consider getting tubes of Desitin
and/or
Butt Paste, both containing zinc oxide.
- Diet plan - coffee is bad for bladder, eat more fruit, less meat, no
cheese & bananas while on stool softeners. Diet and supplements are
part of
permanent recovery plan.
- Look into a cancer society group such as "Man to Man" that meets
monthly
and go to a meeting before surgery.

Repeated Advice:
- Learn to roll sideways out of bed (rather than sit on the edge
trying to
stand upright). Practice before going to the hospital.
- Walking is the best way to get your body ready and to recover.
- Wait to see how bad your incontinence is BEFORE purchasing a lot of
pads
etc. but do buy a package of men's guards to bring to the appointment
when
the catheter is removed. Have a look around at what is available and
compare costs before hand.
- Kegel, pre-operation and post-catheter removal (not with catheter
in)

- Remember, what you are going through is TEMPORARY, in a few weeks
you
won't even remember the discomfort of some of this stuff!

JP

Hi Harold - One thing I thought I would mention is the comfort and
information that I get from the people at this site.  I am the wife of a
much loved husband and it is important to me to stay informed.  I would
encourage your wife to check out the posts, or ask questions if she has
them.  This group is wonderful about sharing their knowledge.  Kind
regards and best of luck!  Debbie

I had this operation on my 60th birthday, Dec 2, 02, (birthday present
my doc said)  All turned out much better than I had hoped for.  I still
jog at almost age 65, LOL, I'm a foolish old fart.  Good luck

Dale J.