My
name is Russell Windle. I live in Dallas, Texas with my partner Victor.
I
was 50 years old when diagnosed on 31 January 2001 with a PSA of
5.2, Gleason 7. I have selected Radical Prostatectomy, to be performed on 14 February
2001. My story continues...
I
am a 50 year old gay man. After a breakup of a seven-year relationship I decided
I needed to get a physical. My doctor did blood work on me and examined me. When
he went over the lab work with me he told me everything was negative (meaning
no abnormalities) except for two tests - my cholesterol which was 226, and my
PSA which was 5.2. He referred me to a urologist, who told me: "We have to talk".
He said that my prostate was enlarged, and he felt some hard spots on the right
lobe, and that my bladder was over-extended. He put me on Flomax and told me to
come back in a week.
The
following week he did the rectal exam again, followed by a sonogram of my bladder.
He then told me he wanted to do a biopsy. So the following Friday I had the biopsy.
On
31 January 2001 at 9:50am I received the news. He had indeed found a tumor that
was malignant on the right lobe - he wanted to talk to me about my options on
Friday, 2nd February. I cried, and screamed, and hurt. At that time I was in the
process of moving out of a house that I and my ex-lover shared. I pulled myself
together and decided I needed to get out and find something to do to get my mind
off of it, so I loaded my pickup and began to move my things to my new apartment.
Friday, I went to the Urologist who gave me the options for treatment, and recommended
Radical Prostatectomy. He said the cancer was contained and that "we"
had caught it in time, and that a man my age, and in my shape should bounce back
from the surgery in no time. He explained also the possible side effects, incontinent
and impotentecy -which scared the hell out of me.
After
listing to the pros and cons of the other treatments, I decided to go with the
surgery. He said he would try to spare the nerves that control erections that
run on both sides of the penis, but wanted me to know upfront that if they were
involved he would have to take them. So on Wednesday, Valentines day, February
14th, I go in at 10:00 AM and have the proceedure. I am scared, but what hurts
the most is having to go through this alone. I will update this as I progress
and hopefully not digress. I have been to a number of support sites, and have
read a lot of the stories posted. I have come to the conclusion that my doctor
was being upfront with me on the treatment options and I have made the right decision
for me.
In
reading these posts I have never came across a post by a gay male. I know there
has to be some other gay men out there with the same problem we all have. I decided
that this was an issue that may be in the closet, so to speak, among gay males,
so I decided to come out of the closet again on prostate cancer. I want to share
with all my brothers both gay and straight - that this effects us all.
[Update
20 February 2001] On Valentines Day I underwent Radical Prostatectomy surgery.
My apprehension was worse than the operation turned out to be. Today I had the
wound drain removed, and the staples that lined the center my stomach from my
navel to the pubic mound removed. My Urologist went over the pathology from the
prostate and the lymph nodes with me. He thought the cancer was contained to the
right lobe of the prostate, but the pathology report showed it had also spread
to the left lobe. He said it was 100 percent contained, and that I was clear of
it, there will be no chemotherapy radiation etc. Just my follow up visits.
What
do I feel? Relief, and it is not the end of the world. I don't know what the future
holds for me and if I will gain control of my body again, or not. When you consider
the alternative, everything else pales. I was scared, but about an hour before
the operation a peace spread over me and took the fear away. When I awoke, I was
sore and when I looked down at my stomach I could see the catheters, one for the
wound, and one for the bladder, and the staples. When I cameback to my room, there
was my mother, who was looking very tired and my aunt Mary. Two of the sweetest
faces in the world to see. I was hungry and thirsty; I didn't get any food, just
ice chips, of which I could have as much as I wanted. The next day I was up and
about the hospital walking around. Saturday I was sent home and it felt wonderful
to be there. Mom is staying with me. I owe her big. Today my dog came home also
and it was good to see him again. He resumed his position by my bed as if nothing
had happened. I had him bought home to get me up and about walking him. He knows
something has happened and remains loyal as only a dog can. I am happy to have
it over and want to share my experience with anyone who has to face this problem.
[Update
3 April 2001] On March 5th I began to dread the next day, the day the bladder
catheter would come out. I knew I was going to be incontinent and impotent. I
was prepared for the worse I had two Depends undergarments in a paper bag ready
to use. Mom drove in to take me to the doctor's office. The first thing they did
is to take some X-rays of the bladder area. Then the technician took the bladder
hose from the bladder and backwashed some fluid into my bladder, he told me to
hold it if I could while he removed the catheter (by the way the removal did not
hurt, it was just uncomfortable to me). To my surprise I could hold it back. He
told me to lie on my side, and when he said, "Okay" to urinate in a beaker he
had given me. I could not, so the tech came in and turned on a faucet (tap) in
the lab, which worked. I was told to get dressed and the wait in the waiting room
for the Doctor to talk to me. I got dressed and waited for him; he came out and
went over the X-rays with me. He told me I was doing great and he didn't want
to see me again for 90 days.
I
was not incontinent, I could hold it, and tell when I needed to go. I couldn't
believe it. For that week and the following week I slept with a pad on my bed,
if I had an accident, I didn't want it to get on my mattress, surprisingly it
never happened. I did and do have a dribble anytime I sneeze, cough, laugh, or
make a sudden move. Dr. Moskowitz said it would dissipate within six to seven
weeks, and it is. I no longer dribble at a sneeze, cough, or laugh, however a
sudden move can still produce the dribble, and it is funny that if I attempt to
duplicate the same move to see if I dribble, I don't.
My
only concern now was could I get an erection. I began to try and discovered it
wasn't going to happen so I called my Doctor and got a prescription for Viagra.
When I tried to get an erection after taking one, I was about 45% to my old self.
I was still concerned so I called again, this time it was for a VED (Vacuum Erection
Device). Research indicated the old cliché, "What you don't use you loose" was
true. It is important to get an erection and blood flowing in and out of the penis
before six months after an RP or the organ develops fibrosis, shrinks, and erections
are a thing of the past. The Doctor assured me that I would be back to normal
in the erection department within the year. I will update that department later
this year.
This
experience was a wake up call for me, and has given me a cause and a challenge.
I want to help other men, gay, bi, or straight men through this process. I don't
want others to go through the hell I went through agonizing about the surgery,
its after effects, etc. No one should be as scared as I was. My first Challenge
is to set up a support group here in Dallas, for Gay, bi, and straight men (who
want to come) who are dealing, living, and surviving prostate cancer. In closing
this update I want to say, I wear my blue ribbon with pride - I survived. My goal
is to pass on these ribbons to others who are surviving.
[Update
21 June 2001] On 12th June , I went in for my first post op PSA test. I was
dreading it, wondering what if were still high, what would I do? I decided I worried
too much about it and that all my thoughts were negative - so I put it out of
my mind. When I went in the Doctor asked me how I was doing, I told him fine,
except for 15 lbs which I picked up after the surgery. He allowed me to return
to working out on 1st April, but I just can't seem to shake those pounds. He asked
me if I was wearing a pad (in reference to incontinence) I told him no I wasn't.
He asked me how long it took me to regain continence, I told him 4 weeks after
the bladder catheter came out, which was three days after I returned to the gym.
He asked me about erections, I told him they were non-existent without help. He
asked me if the Viagra was helping? I told him somewhat, I could start to get
an erection with it, but it lost interest. I told him I had better luck with the
VED (Vacuum Erectile device, or Pump). He asked me if I wanted to try any other
therapy, I told him no. I had read about injections and scar tissue that eventually
develops, and Muse was to damn expensive (Muse is a pellet that is inserted into
the Urethra pre-viagra). I told him I was having phantom erections, and when I
felt my penis I could feel the beginnings of an erection, he said it would take
time.
He
ordered a PSA test and I told him of my concerns about that, he said my margins
were great, and I should not worry about it, I told him just the same I was concerned.
He said he would call if anything was wrong. I thanked him. On Thursday he called
he said the PSA was undetectable, I guess he knew I was still obsessing about
the test. I was happy.
The
following Saturday I ran in the "Dad's Day 5k Run for Prostate Cancer Awareness"
and finished it in 33 minutes and 51 seconds. Erections are my obession now, will
update when they happen. Peace.
[Update 21 June 2001]
Current Age 50. Current PSA Undetectable. Current Treatment None. Initial treatment
Radical Prostatectomy
I have been involved lately in starting a support group with my Doctor here in
Dallas, for Gay men dealing with and facing prostate cancer. We have a listing
with the American Cancer Society and are the first gay support group in the country.
It is open to all men. The orientation may be different, but were all in the same
boat. We have a temporary web site on Yahoo search under "Prostate Cancer" then
click the club name. "Gay Men and Prostate Cancer".
I
have also been counseling with a number of men here in Dallas who are scheduled
to have or have had a radical prostatectomy. I have become a zealot for the cause.
I have been dating a guy, Victor, who has been very understanding and supportive
about my situation, but then again that is the kind of guy he is.
I
am the one who has been apprehensive about relationships wondering how a healthy
person or a "complete" person would relate to someone who is healthy, and considers
themselves "incomplete". Victor has accepted what I consider my "incompleteness",
and has helped me over it also. In a way I guess it is what love is all about,
not the physical, but the emotional. When I would run away from the physical side
of the relationship, he has helped me get over my self-consciousness about my
difficulty with erections. The physical is transitory, it is the emotional side
that lasts.
I
go in Monday (October 15th) for the second post op PSA blood test. Hopefully the
results will be the same. I will do an update with the results. I still don't
like them, but what can you do?
Further
update as at 7 November 2001: My results from my last PSA test were "Undetectable".
The next one is scheduled for the first anniversary of my RP.
[Update June 2002]
Current Age 51 Current PSA <0.1 Current Treatment None- initial treatment?
Nerve Sparring Radical Prostatectomy
On
Feburary 15th I had my one year anniversary of my RP. My PSA remains >0.1, My
urologist said everything was excellent in the xrays, and he didn't want to see
me until August. I feel truly blessed.
[Update
1 Sept 2002]
Current_PSA_
= <0.1 Current_Treatment_ = None
I recently had another test six months after February, and my PSA remains the
same <0.1. Viagra is working now also.
[Update
Feb 15 2003]
Russell
is now 52 with a current PSA of <0.01 following his Radical Prostatectomy 2
years ago.
Hi
story update: On February 13th., the day before my two year anniversary of my
surgery I had my two year exam and PSA test. I am happy to report that my PSA
level is still <0.01, or undetectable. My erections do not need that much help
from Vitamin V, or Viagra.
[Update
January 2004]
Russel
is now 53 and his current PSA is still less than 0.01 ng/ml.
He
says:
My PSA remains less than 0.01 or undetectable. I had a PSA test on August 18th
2003 and on January 7th 2004 and the results remain the same as the previous ones.
My
anniversary of my surgery will be Valentines Day of this year and Victor and I
are still very much a couple the sixteenth of February marks our third anniversary.
He came to visit me in the hospital on that date.
[Update
September 2004]
I
had my last PSA test done in August on the 12th and the results remain the same
less than 0.01 I am happy. Another development in this ongoing saga is that I
can now attain erections without any physical or chemical aids. Victor and I are
still very much in love and are planning a trip to San Francisco this weekend.
[Update
20 February 2005]
On
February 14th the fourth anniversary of my sugery I had another PSA test and the
results came back again less than 0.01%. I am happy for that and to be sharing
my life with my partner Victor. Who has been there for me through all of this.
Now only six years to go.
[Update
4 September 2005]
I
have a PSA test done on August 21st, 2005 and the results are still less than
0.01.
[Update
11 March 2006]
February
14th 2006, marked the five year anniversary of my radical prostatectomy. I also
had my five year PSA test done on the 14th the results came back like all the
rest >0.01. I now see my urologist once a year now instead of every six months.
My support group on Yahoo Prostate
Cancer and Gay Men has grown also with almost
three hundred members. The
group is a mixture of gay, straight (yes, straight men are in the group also),
and bi-sexual men, although the majority is gay. We have no problem with sexual
orientation, as long as we respect each other (notice I said "we" and not "they
respect each other"), respect is mutual on the behalf of all in the group. One
of the main comments from the straight men in the group when asked why they chose
to join a gay group is that we are a younger crowd we discuss treatment and sexuality
after treatment more frankly and openly than most straight prostate cancer groups.
[Update
March 2007]
Febuary 16th, I had my annual PSA test the results are still undetectable.
[Update
July 2008]
Had
my last PSA test February 12th, 2008. It still remains at >0.01. Victor and I
are both happy.
[Update
February 2009]
I
had my eight year PSA test on February the 17th. My PSA remains at >0.01. Still
cancer free.
Russell
.
[Update
March 2010]
Russell
sent in his update saying his PSA is still undetectable.
[Update
March 2011]
Had
my 10 PSA and check up with my urologist Dr. Moskowitz, and the PSA came back
like all the rest >0.01.
I
am elated and cured. Living life with Victor to the fullest.
Russell
Windle .
My email address is rlwindle@sbcglobal.net
