Jerry
Roberts and Nonia live in Florida, USA. Jerry was 67 when he was diagnosed in
July of 2004. His initial PSA was 10.5 ng/ml, his Gleason Score was 3+3=6 and
his staging T1c. His choice of treatment was Laparascopic Surgery. Here is his
story - regrettably Jerry did not respond to reminders to UpDate his story, which
ends in December 2007:
My PSA had been climbing for more than 15 yrs.
My urologist always explained it to be resulting from a large and growing prostate.
However when it moved a full point in nine months, I knew it was time for action.
Having found a new urologist, the decision was made at the first meeting to get
a biopsy, which found 1/8 cores contained a small focus of cancer.
My
URO advised me to go with radiation because my going for RP (Radical Prostatectomy)
was complicated by a blood clotting condition that would make surgery very risky.
I had done a lot of computer research and made contacts with several support groups,
and against my better judgement, I decided that it would be radiation. I agreed
with my Oncologist to take six months of hormone treatment in order to shrink
the prostate and allow for a possible better result from radiation. I received
my first three month hormone shot mid September.
However my research
continued and eventually I discovered LRP (Laparscopic Radical Prostatectomy)
with a Doctor in Miami who agreed to do the surgery and keep me on blood thinners
throughout the procedure. After digesting his website, and speaking to several
people who had gone with LRP, I made the necessary arrangements and had the surgery
on November 10, 2004.
My LRP procedure took some five hours to complete,
possibly because of such a large prostate (119 grams), and, having sailed through
the five hours of surgery without a problem, my Doctor discharged me the next
day, with a catheter and some pictures of the whole process. He also cautioned
me that he had done an unusual amount of cutting and etc etc-- that I should be
very careful not to do anything to cause stress or strain that might result in
a setback.
I discovered later in my hotel room that I could not sit because of having such
a pain in the ass and around the perineal area, so I found relief in laying on
my back with the hope that when the catheter was removed, everything would start
to settle back to normal. In the meantime I took some comfort in my wife bringing
my meals to my bedside and of course doing all the necessary chores.
I returned to his office twelve days later and had the catheter removed. I was
given some instruction in the way I should manage my continued care back home,and
prominently included was an item explaining that I might have some perineal pain
following my procedure. Well, I wasn't disappointment, it is now nine weeks post
surgery and I've spent most of that time laying on my back and hoping each day
I might detect some improvement. My Doctor advises that I should have patience
and time will take care of it. Anyone reading this and having some experience
with perineal pain following prostate surgery, please email a note and tell me
that I will eventually improve.
Also and probably because of a very sore
pelvic area, I am still almost fully incontinent and I have to hope, as my Doctor
has said, that it too should improve along with the perineal pain problem.
However the pathologist has reported that my cancer was fully contained with
all negative margins, and I have to say that my new Doctor and surgeon in Miami
who did my LRP has a lot of experience with the LRP procedure and I feel confident
that all will turn out OK.
I will update later when signs of change occur
in above problems, and at that time I should have PSA results.
Had
my first PSA done on Feb. 7th 05 and was pleased with the result of <0.10 ng/ml.
My perineal pain, now three months post surgery, is showing some improvment. The
incontinence is slightly improved, and I would hope that the leakage will improve
further, along with the pelvic pain problem. That would make everything seem almost
normal.
I
have heard from only two RP's that experienced perineal pain, so I guess that
it may not be as common as my sources indicate. It would be helpful to hear from
someone about their experience with incontinence which lasted longer than three
months.
Please
accept my gratitude to those who have written with good wishes and exchange of
views. I am always glad to share info, regarding any part of my experience, with
anyone who may be interested.
My
last update was February 05 and my travel kept me at an inconvenience for updating
since that time.
My
perineal pain, that I experienced during the first few months post surgery, gradually
went away.
My
continuing torment was incontinence which required 2+ "medium" pads/day for over
a year. I continued throughout with Kegels/walking/exercise and a modified diet
with a "no give up" determination. Gradually there seemed to be some slight improvement.
I looked everywhere for help and advice, and all of that contact and advice came
from others like myself, contacted via sites like this one. Not once did I find
any worthwhile advice coming from Doctors, whose only comments were towards an
implant.
Most
doctors, wrongly,doesn't seem to think that Kegels etc. are of much benefit, and
that leaves many with the frustration of some form of surgery, which in my opinion
is dangerous and should be the very last draw.
My
improvments were slow in coming and seemed to appear suddenly, sometimes after
many months of hard work at my routine. I am still not fully continent but I am
now getting by with one minipad/day and I could go a second day on the same pad
if it was necessary.
The
other obstacle "ED" still lingers and I am now approaching the 2 yr. anniversary
on Nov. 10th/06. Just maybe there might still be a miracle.
Thanks
to Terry for his reminder to keep contact, and good luck to all my brothers.
Please
come back if I can be of any help to anyone.
Kindest
regards, Jerry.
It's
now over three years post surgery and all effects of the surgery have long gone
away with the exception of leakage. I still use one small pad/day. This however
is probably the one area where this update may be of some help to the long term
leakers among us.
I
am continuously working for the day when I can throw away that one small pad.
I have had correspondence with many leakers and I have tried all suggestions,
some with positive results and some with none. However I remain determined to
cure the problem and to cure it without further surgerical procedures. It's always
helpful to share info with others, where we can use each others experiences to
benefit our own fight.
I
therefore invite any one with prolonged incontinence, to send along their story
and see if we can find additional help and support. I am presently of the opinion
that I will succeed in throwing away the pads in the coming year.
