john ruggiero

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Hi All,

Like everyone else who writes something like this, I will be eternally
grateful to the many people in this newsgroup who took the time to answer my
posts before, during and after my LRP on 1/11/03.

I was 45 yrs old when my 1st PSA test came back at 3.7. After the biopsy
came back with G 3+3, I found Dr. Douglas Dahl on http://www.phoenix5.org
and had the LRP (laporoscopic radical prostatectomy).

If a newly diagnosed person asks me "What should I do?" I always tell them 2
things:

1) take your time, this is a very slow-growing cancer with a near 100% cure
rate.
2) look at all the options and pick the one that is right for you and your
family.

I have recovered pretty well. There have been some changes and some
lingering side effects but all in all I feel great and enjoy life with a new
outlook and more joy than I ever had before my "death sentence". I have yet
to have a usable erection but there are hopeful signs. I haven't leaked in 9
months but when I gotta go, I gotta go! I also have started riding a
recumbent bicycle (http://www.escapekey.biz/bent.html) per doctor's orders
(he didn't want me sitting on his fine work). I got great care and was back
to work in less than 2 weeks.

Thanks again for all your help. If you are newly diagnosed, please feel free
to email me (take out the nospam) and I will answer all your questions to
the best of my ability.

-john

steve kramer

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Glad to see you came back. My memory is sketchy, but I seem to remember the
"45". Way too young for this disease, but that's probably how old I was
when I got it.

--
Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA .1 .1 .1 .3 .4 .8
EBRT 05-07/2002 @ 47
PSA .3 .2 .2 .2 .3
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA .1
Lupron 7/03, 8/03, 12/03

john loomis

Hi John, It sounds like you are doing fine. I am glad you are not peeing
yourself also. That is the worst.
I see in your letter that you are worried about ED.
Walking and bike riding can help.
Using can help also even in a flaccid state.
The inexpensive pump works and use it. It happens to be the less intrusive.
My Dr. scheduled me for shot therapy.
I did it, and after several trials and errors, was glad to have that
opportunity.
It worked on and off for about 2 years.

Talk about beating a dead horse.!

Anyway, I tried Viagra and got a screaming headache!


After 2 years if not more, and not doing needles and or pumps, I started to
get some kind of reaction?
Hum, nerve damage, one set saved, connection!
After 4 years now I can say that I am in "Great Shape" in the ed department.

I use .25% of a 100 mg pill. Wow!

Next PSA test coming.....RP 1999
Wish me luck.
I wish you the same!
Keep jerking it! It will come to life.
And love your wife or your partner!
John Loomis hanging in there!

john ruggiero

What ever happened to the guy who posted that drivel about drinking your own
urine? He was an endless source of amusement for me.

steve kramer

Martin Howard near the end of November claimed a PSA reduction. I think it
went from 930 to 850, or thereabouts. He was regularly reporting his PSA
tests, but I've not heard from him since late November, early December.

--
Prostate Cancer Survivor (so far), not a doctor
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000
PSA .1 .1 .1 .3 .4 .8
EBRT 05-07/2002 @ 47
PSA .3 .2 .2 .2 .3
Erection 05/12/2003 @ 48
HTbegins 07/21/2003 @ 48
PSA .1
Lupron 7/03, 8/03, 12/03

mh

Hi, John Loomis....

I just want to tell you how much I appreciate you sticking around and
continuing to offer support and encouragement. I'm 14 months post-op after
nerve-sparing LRP and still no reaction from Mr. Willy. ;P I keep after him
to wake up... but he seems to be down for the count. Some days it's much
easier to forget about than others. But your upbeat posts and reminders of
your long journey back to life really do give me *hope* that something might
still happen down there! I feel so petty sometimes... I should be thankful
for life. But I miss the erections, plain and simple. In so many ways, the
psychological components of this disease have been MUCH more difficult to
handle than the actual surgery.

Take care... and thanks again!

MikeH

johng

Hopeful signs are good. That's all I had for a long time after my RP -- nearly
a year. At least it lets you know that the mechanism still exists.


After my surgery I figured a recumbent would be my backup plan for riding, but
it turned out not to be necessary. My surgery was in late January (2002, age
53) and I started riding my DF in April. It was just a bit uncomfortable at
first--enough to make me nervous and stick with short rides close to home. It
was actually like that for several weeks. By June I was feeling pretty good,
but I was thrown from my bike when I hit a raccoon at the bottom of a hill. I
didn't even leak, but I felt pretty dinged up for the next several weeks. In
August I did a 90 mile ride, but mostly I didn't ride a lot the first year. I
got in some longer tours this past summer. Still not nearly enough, but it's
good to be able to do it. No 82 MPH for me, though. 82 MPday, tops, and
that's starting early and ending late.

Say, about your geocaching, did you put your catheter in one of those boxes?
And your other post-surgery paraphernalia in others?

JohnG

johng

I agree. Maybe it was better that I didn't know about that ahead of time (even
though I HAD read about it). Hang in there, though. (Or, maybe there has
been enough hanging, and now it's time for some lifting. If making fun of
these things can get a rise out of them...) Anyhow, I also appreciate what
John Loomis is doing for this group.

JohnG

leonard evens

You are not being petty at all. Even apart from sex, erections were a
natural part of your body's functioning, and it is perfectly normal to
feel the loss. John and I are two examples of men whose erections
returned well past 14 months, so something may yet develop. But even
if they don't it is possible for you to have something approaching a
normal sex life with a pump or injections. It won't completely make up
for the lack of erections, but it will help.

mh

Thanks, Leonard.... you, too, are forever supportive and encouraging. I
sometimes wonder how I would have made it through this past year without all
you guys!!

I have a pump.... other than using it for exercise, it doesn't work for me.
I have injections, but I started using those and developped Peyronie's. I
don't think I was meant to have a sex life post-RP.

It would help greatly to have a wife who was really seeming to miss the sex,
too. My wife wasn't really interested in sex anymore..... *before* the RP.
So this has been like a *holiday* to her. Anything I do, I do on my own. I
bought and read "Making Love Again". I suggested she read it. She did. She
finished it and put it down.... and has never mentioned it at all. We are
just in different places ... and my equipment is failing... and some days
it's a bit more than I know how to deal with.

I appreciate your words... more than you know!

MikeH