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.
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.
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.
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.
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?
My results from my last PSA test were "Undetectable". The next one is scheduled for the first anniversary of my RP.
Current Age 51 Current PSA less than 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.
Current_PSA_ = less than 0.1 Current_Treatment_ = None
I recently had another test six months after February, and my PSA remains the same less than 0.1. Viagra is working now also.
Russell is now 52 with a current PSA of less than 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 less than 0.01, or undetectable. My erections do not need that much help from Vitamin V, or Viagra.
Russel is now 53 and his current PSA is still less than 0.01 ng/ml.
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.
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.
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.
I have a PSA test done on August 21st, 2005 and the results are still less than 0.01.
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.
Febuary 16th, I had my annual PSA test the results are still undetectable.
Had my last PSA test February 12th, 2008. It still remains at >0.01. Victor and I are both happy.
I had my eight year PSA test on February the 17th. My PSA remains at >0.01. Still cancer free.
Russell sent in his update saying his PSA is still undetectable.
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.
PSA is still undetectable, life is good.
Still riding the big 0, undetectable.
Still plugging on.
Still plugging along, no changes.
Still kicking around. I have been released from my urologists care for about two years now. He said live a long and happy life. Which I have been doing. On June 29th 2016 Victor and I were married at the Dallas County courthouse we have been together for 16 years as of February 16th.
Russell's e-mail address is: rlwindle AT sbcglobal.net (replace "AT" with "@")