Dave
Curtis and Jeanne live in Delaware -USA. He was 56 when he was diagnosed on October
19, 2007. His initial PSA was 6.7 ng/ml, his Gleason Score was 3+3 =6 and he was
staged T1c. He is undecided as to his choice of treatment. Here is his story.
I
had a bout of prostatitis in August this year and my PSA went from 4 to 7. So
my GP put me on Cipro for three weeks but a subsequent PSA only came down to 6.7.
So off to the urologist who said DRE negative but let's do a biopsy just to be
safe.
Biopsy was not fun and I had a haemorrhoid that was not happy -
but no big deal. Well the doc said I have cancer. Report stated right mid core
biopsies shows moderately differentiated prostatic adenocarcinoma - tumor involves
50% of one core and 10 to 15% of the other core. Cancer also in right apex with
40% of one of two cores involved. No cancer in right base or anywhere on the left
side.
I was in disbelief! This is something that happens to some other
poor guy. Well I guess this time I'm that guy. My uro was reassuring that it is
a "garden variety" version of the disease and we got it early. Needless to say
I had a bad rest of that day but I quickly turned fear and doubt into a research
project. I work for a scientific instrument company and have been working with
computers for over 30 years so needless to say I love the web!
I have
been on numerous sites and have really educated myself on this terrible disease.
I stumbled onto this site and it has been a godsend - especially in those early
days after diagnosis. You guys are the best and I would be terribly remiss if
I didn't contribute my story. So here's where I stand.
My uro said seeds
or robotic surgery. I love the guy - he did not push me in either direction. He
use to do open surgery but now assists with another fine doctor doing brachytherapy
at our local hospital here in Delaware. So I'm leaning towards the robot. I have
a consult the day after Christmas at Johns Hopkins with a Dr. Jarow who is one
of several doctors at JH who do the da Vinci procedure as well as the open surgery.
I also have a consult Jan 15th 2008 with Dr. Mc Gunnies at Bryn Mawr Hospital
outside of Philly. He also is a pioneer with the robot and has done many of them.
Experience is a good thing.
I'm kind of negative on the seed thing because
of what I have read here and elsewhere that the immediate aftermath is not so
bad but as time goes on because of the radiation the neuro bundles and other blood
vessels and nerves are negatively affected. So yeah with the surgery you get beat
up upfront but you improve to a reasonable state as far as sexual and uro in about
a year (hopefully). With the radiation you're okay upfront but have more negative
side effects down the line. I have read from you guys that glow in the dark or
you guys that have been attacked by robots and your information has been wonderful!
However I'm still sorta undecided but leaning towards surgery because I'm fairly
young and the better salvage options should that be necessary.
More after
my consults. Any feedback on the robotic procedure is appreciated.
I
forgot to mention the barrage of tests that we all go through. All tests scans
etc were negative - thank God!
I
had my consult Dec. 26th at Johns Hopkins with Dr. Jarow who has agreed to do
the robotic procedure on Jan. 18th. After talking to Dr. Jarow I knew he was the
one I wanted to do my surgery and I am very fortunate to have him. I did not want
any more consults - I have done my homework and I am satisfied with my choice
of hospital, surgeon, procedure.
Several
of you guys responded to my request for advice and I thank you all for your feedback!
I
will update after I get home from surgery
I
had my Da Vinci laparoscopic prostatectomy at Johns Hopkins on Jan. 18th. Needless
to say it is a day I will never forget. My wife and I actually arrived in Baltimore
(only a one hour drive) the day before for some pre-op tests and evaluations.
The people at JH were all very courteous and efficient. We were outta there in
a couple of hours and then off to our hotel. By the way the hotels in Baltimore
offer a discount for JH patients.
Surgery day... Surgery was scheduled
for 2:30 PM so the morning dragged on with me not having anything to eat or drink.
We were told to be at the surgical center by 12:30 and once again everything went
smoothly with admission and pre-op. They started an IV and I put on the TED stockings.
My two sons drove down and together with my wife joined me in pre-op. It was great
to have my family there and we joked around and talked about the NFL playoffs.
It really helped to take the edge off of what was about to happen. The anaesthetist
showed up with forms to sign and an explanation of his procedure and the breathing
tube. For some reason the OR was backed up and they finally took me back at about
4PM.
I actually walked into the OR and after looking at the robot and
the console I lay down on the table. They strapped me down because the table is
elevated to a 45 degree angle with your head down so that the your organs will
hang down - no kidding. The operating room looked so surreal. There must have
been at least 10 doctors and nurses prepping me and doing various other tasks
in the room - really strange feeling at this point. A couple of quick jokes about
how I wanted to see the calibration date on that thing (the Da Vinci) and the
next thing I knew I was out like a light!
When I came to I had to stop
for a second to realize what had happened to me. Then it hit me - there was a
lot of pain coming from my abdomen and my penis and a very nauseous feeling as
well. The doctor and nurses in recovery were great but it took them about an hour
to get my pain and nausea under control. After an additional half hour my wife
and sons were allowed to visit - one at a time. It was getting late so after my
wife came in a second time I told her she and the boys should go - there is nothing
they can do for me. So they took my advice and went back to the hotel. It's getting
towards midnight and I'm still in recovery because they can't find me a room.
That's okay with me because I'm getting constant care. The only problem in recovery
is they will only let you swab some water in your desert dry mouth. There is good
reason for this because just that little bit of water made me nauseous. I finally
got to a room by 1AM and they said because I was a good patient it was going to
be a private room. Not much sleep that night because of hourly checks of my vitals
and the six stab wounds in my abdomen.
Early Sat. morning my surgeon came
in with the good news that if I felt up to it I could go home later on that day.
He felt as though the cancer was confined to the prostate but that we would have
to wait for the path report. He also said he felt very good about his ability
to spare out the nerves and that he got a good connection to the bladder. I thanked
him for all of his efforts and off he went to his next patient.
My wife
joined me that morning as was surprised to see me up and walking the floor. I
really felt pretty good but my abdomen was really swollen and I had a lot of pain.
In order to get out of "jail" I had to pass gas so the rest of the morning and
afternoon I walked the halls endlessly. Finally around 3PM I passed the test and
was free to go. The nurse gave me my instructions on the Foley and home care etc.
The ride home was a little rough - I should have asked for a pain pill before
we left JH. Now I had to wait till we got home and the prescription was filled
for some relief. Do not let your pain get ahead of you. Saturday night was not
pretty and I walked around the house hoping to pass gas and praying for a bowel
movement. None came so I took another pain pill some mineral oil and a laxative
and tried to sleep. I did manage to get about four hours or so just from sheer
exhaustion. Sunday was a better day with things down below resolving - thank God!
Still Have a lot of abdominal pain - not fun.
The next 6 or 7 days are
pretty uneventful- just trying to walk outside further and further each day but
that darn catheter is a real pain - literally! It was taped to my right leg and
had to be re-taped a few times. JH also has a one size fits all bag which I could
pin to the inside of my sweats or loungewear and it also was big enough "just"
for nighttimes.
I went to my local GP to have the catheter out on the
28th - eight days was enough! It was more painful ripping the tape off my leg
than having the catheter pulled out. This past week I get better every day - abdomen
still sore and swelling of my scrotum and testicles has been real uncomfortable.
Doc says it's normal and all my swelling will go down gradually as things heal
- i just have to be patient. Other than that I feel pretty good.
It's
Sat. Feb. 2 and everything continues to improve in baby steps. My continence since
the catheter came out is pretty good. I'm dry at night and for the most part in
the morning but as the day wears on, I leak. Especially when getting up or walking
or sudden movements. My bladder is slow to tell me I have to go so I force myself
a little and if I do this the afternoon / evening squirts are not too bad. I go
through a pad or two a day and feel very grateful having read of other guys this
far along who do not do as well. Keep the faith guys!
My
post op path report was the best news any of us can hear (organ confined). My
heart goes out to others who are not so fortunate and are dealing with more advanced
stages of this bastard. I am a little over two months out from surgery and things
are improving day by day. My first PSA was "undetectable" - My continence is great
- just a squirt here and there getting up and down or working out in the gym.
I have to remind myself to void even when there is no urge - this keeps the squirts
to a minimum. I still wear a small feminine pad just for security daily. I had
several accidents at night but that was due to too much fluids before bed. I'll
be honest here - a couple of beers!!! Anyway the last few weeks have shown great
improvement in this department. I owe this wonderful result to the skill of my
surgeon! I only kegeled randomly before surgery and every other day since surgery
and never overdo it. I think (IMHO) too many guys are 'Kegel crazy' and do too
much. Every other day is what my surgeon from JH says and the best exercise you
can do is to stop the stream while you're voiding - and I have done it-and I believe
he has advised me well.
As
far as ED I am totally impotent. I can get some fullness and length (maybe 3 or
4 inches) with lots of manual stimulation. My wife has been great and we have
had a number of sexual encounters using our hands and toys to keep our interest
in one another going. Guys I believe you have to do this and be creative and keep
going with your partner for your sexual health. I have orgasmed every time after
alot of stimulation and they have been both intensive and weak but I think they
will get better as I heal - at least I hope. I go for injection therapy at JH
on 21 April and will report back. My Surgeon Dr. Jarow is an expert on ED and
has written many papers and done much research on the subject. I am in good hands.
More later and thanks to Terry and all who contribute to this site!
Sorry
I haven't updated in awhile - where does the time go? Anyway since my April update
I have had some ongoing improvements. My second PSA was undetectable so great
news on the main issue. My continence is excellent. Like others I only have a
drop when I move the wrong way in the gym etc. I have kinda gotten lazy about
doing my Kegels so I am trying to get back on track because they do help.
ED
continues to be an issue with little progress as I am about at the sixth month
post op. I can get some fullness with stimulation and Viagra and / or Cialis help
a little. What has really been great is the Bimix injections I have been doing
since April. I have had only one or two failures when I was careless and hit a
small vein. My doc (who is one of the worlds experts on ED says as long as I do
the injections as taught I should not have any issues with fibrosis. Well I'm
injecting 3 ml's and the results are amazing. I stay hard for at least an hour
- sometimes more - and so my wife can enjoy multiple orgasms.
It
takes me longer to climax so again that's more time for enjoyment for both of
us. My orgasms are sometimes great and other times not so great. So I know things
are still healing and I just have to be patient. I do leak a very small amount
of urine especially at orgasm so I must remember to empty my bladder before sex
which helps a lot. My doc also prefers the injections over the pump and says they
tend to "jump start" natural erections. I have trusted this guy from the beginning
and see no reason to doubt him now.
So
to sum things up PSA zeros, continence great, and if there is a silver lining
I can laugh at the Avodart commercials. Sex is more enjoyable now that I can actually
do the dirty deed again with the injections. My wife who has been a wonderful
understanding and patient partner is enjoying having me be more normal in bed.
In short guys life is good. I am going to continue to work as hard "no pun intended"
as I can to get the little guy big and strong again. I am only 57 and I have got
a lot of lovin' to do!
A
footnote - Too many guys don't discuss their sex lives and I understand but if
you can help another guy who is looking for advice then why not share your experience.
That is why I have given you the details of my "sexual healing" as Marvin Gaye
would say!
Well
it's been over a year since surgery and I am happy to report my one year PSA is
undetectable. My doc says only yearly PSA tests from now on.
My
continence is very good with just an occasional squirt when I move the wrong way
or pick up something heavy.
Unfortunately
my ED has improved very little. The pills "i've tried them all" only give a fullness
but nothing useable. During and after orgasm it gets harder but not enough for
penetration. I am still taking 50mg Viagra daily for bloodflow and Bimix injections
for sex. The bimix works great and I am using less dosage for the same results
I got with higher dosage. I started out with .03ml but am now down to .15ml. Stimulation
makes it even more erect and usable so I think I am S-L-O-W-L-Y improving in this
department. Also I have to remember to empty my bladder before sex or I will leak.
Doing Kegels has also helped with this issue. It takes a lot of patientce.
I
will report back in a few months - Good health to all !
Dave's
e-mail address is: dajcurtis@comcast.net
