Please reply with your helpful hints and suggestions for 1. the emotional and social ups and downs that you feel may be unique for gay men with prostate cancer, 2. special thoughts or suggestions for men who are married or partnered to men and both have prostate cancer and 3. post-treatment sexual helpful hints...please feel encouraged to use whatever words you feel best describes what you are trying to say.
It's OK to re-post replies you previously made. I want this to be comprehensive. I think it will be great to have a full community response to this...I'll pin the post as a resource for us all. Thanks!
Written by
Darryl
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There are a lot of feeling attached to ups and downs of dealing with the results of the treatment of prostate ca. The downs begin with the inability to get an erection. Feeling unable to perform sexually, feeling like I'll never be able to enjoy sex again. Feeling like I'll be able to be in a satisfying relationship. No real upside that I can see at this point. It's been six months since the radiation and the seed implantation.
I'm in the same boat after 9 week following gull RRP, no erections, still dribbling, still using a pad. Don't see any prospects for improvement over the short term while the long term appears no better. No response with 50mg generic Viagra, no response with porn and losing interest rapidly...
The emotional and social ups and downs? The gay culture is somewhat paranoid about a lack of sexual performance. Most men fear death and become depressed, but the gay community turns away from prostate survivors. It is like AIDS where you don't see the disease at first and conditions often change trying new therapies with new side effects. So the patient feels old, tired, at the end of life. Also prostate cancer often affects men over 55 years old and the gay community is looking at younger men, so we get a double whammy.
My lover died of HIV/AIDS 15 years ago. Having suggestions for men who are married or partnered to men, is certainly a positive emotional help. You know "plugging in" is not the only thing in life, and sensuality can include back rubs, kissing, caressing, spending time together. A relationship depends on five areas: physical, financial, spiritual, intellectual, and emotional. There is no mention of having sex, it really does not have to be the center of a relationship. Both members work on all five of their areas as best they can, and they communicate with each other. If your lover likes to talk about current events, then you should watch the news and read the newspaper. Same thing with sports, computer games, cooking, or whatever you have in common.
For post-treatment sexual helpful hints I am lucky. I stopped therapy one year ago and I can have orgasms when I masturbate. They are not like they were, but better than nothing! I found a gay church that preaches that Jesus and God love gays! It is an MCC church. I found two other men with prostate cancer and we have a meeting on Wednesdays that is introspective. I can share my feelings openly. I also have five years clean in a 12-step program. I sponsor two men and go to 2 meetings a week. I have three other diseases, heart, diabetes, and kidney disease. Also, I am urine incontinent and I had cancer for eleven years. I am 74 years old. Life goes on and I am moving into a retirement center to get nursing help if needed and get kidney dialysis. I truly enjoy life and wish you all well.
Thanx for your story Jim!! We have much in common. Besides the pc, I am also in recovery from alcoholism, 2yrs + and post heart event in 2013. I’m 64 & have been on ADT for about 3 yrs. I really dislike the side effects of it. Lose of muscle , loss of erection, almost dry climaxes.
I haven’t had sex w/ anyone for yrs. Just embarrassed of my body & I really miss my big hard on!!😎 I agree with you ,the gay community is obsessed with youth & beauty. I was the same way in my youth...!! Always after the hottest guy… anyway my PSA levels have stayed about 1.5 but I’m going for a second opinion & considering surgery so I can stop the hormone & chemo therapy... would love to go to beach & not be embarrassed by these man boobs. Stay well.
I stayed on Lupron for 6 1/2 years with a PSA of 0.006. I have been off of Lupron for over a year and my PSA is now 0.06 and my T level is 24 (should be 360). My oncologist does not want me to take medicine to increase my T, because of stimulating cell division of single PCa cells in my bones. I will tell you that I do lust more when I see a cute guy, and I look at porno sites. I started N.A. in 1984. I was given 2 years to live 2011 and told to get my final papers in order and visit any one in America while I still can. So I decided to get high on cocaine, after 18 years of clean time! Five years ago I quit using and one month later my Mom died. So I was able to help her and settle her affairs. So I have five years clean, and yesterday one of my sponsors fired me. I wish him well. What I am telling you is that life goes on. People love you for your insides and how you treat others more than your looks and penis size. (Keep what you have!) There is a light at the end of the tunnel. I wish I were ten years younger! Always remember to just keep truckin'.
Since my surgery in 2013, I have written of my up's and down's. Please go to my profile
TucsonCowboy to read these. It has been "interesting" and in some ways I am not quite
where I viewed I would be at present as far as side effects go. That being said my life now is good. After surgery I began doing volunteer work which i had done in the past. The view I have taken is since I am retired to continue doing something as long as it is fun. I am quite busy with my life and my volunteer work as really helped me get back into life and feel a part of things again. I will be 70 in six months and after years of very much involvement with the "Gay community" to speak, am at a very different place in my life.
I feel I am so lucky to be a member of a faith which is totally supportive of LGBTQ individuals. These people I view as my family so to speak and had been made to feel so
welcome and have began given a sense of belonging. Maybe I have said to much but I just feel so happy that I am alive and cancer free (regardless of some of the still occurring side effects). Yes, "sex" is clearly not where I want it to be but I am very content with my life.
Early days for me, Darryl. Six months post-op. The challenge for me is in re-defining what it means to "perform sexually" in the light of a cock that does not stand up and that dribbles on occasion. I hope to believe that I am more that my cock and that sexual expression allows broader avenues than sticking that cock in some hole. Before surgery I found the most pleasure in pleasing my partner; I still do. Before surgery I had a profoundly loving partner; I still do. And I have a lot of questions: the main one is in talking to my straight married age peers, many (most) gave up on sex a long time ago. Is the drive for sexual experience/expression/release different in gay men? Do we remain sexual for a longer time, perhaps? Others I read cite religious issues and living their lives. Happily as a member of a liberal religious community and "welcoming church" that has not been an issue in the three years I have been out. I am grateful for that. It is a pathway that is mine. I would not have chosen it. But it is my pathway. I am happy to participate in the RESTORE study and I strongly encourage others to do the same. There is so much not known about gay men and prostate cancer.
I am not ready or willing to abandon my sexuality. I am trying to be as proactive as possible. I love to masturbate and I like bate clubs like NY Jacks and I enjoy my body, so I am doing what I can to get back to that by participating in the Restore program. I ignore the “ageist” notion that gay culture is focused on youth. I enjoy men my age and older (have always preferred older men). Even as I struggle with ED, I am looking for other ways to express myself. I am looking into such programs as Body Electric, Easton Mountain, and the like. I am also considering a sacred intimate who might help me come to terms with this new reality.
Moreover I have been thinking that gay men with prostate cancer could form their own bate club and learn from each other.
I have lived in the Adirondacks since 2002 and at times get to Easton Mt. Had PCa treatment back in 2004 at age 54. 8 wks of radiation (had a GL 6 and PSA 6.9 ) Never have had ADT . My PSA has been around 1.0 for years. Contribute this to the doc up here in Glens Falls.
It was good and a surprise to see the heading ”Helpful hints for a Gay Man with prostate Cancer. Living in Denver, CO I have been trying to find a gay prostate cancer support group, but it does not seem to exist.
I was diagnosed with prostate cancer last August and after a parting with the Denver health & Hospitals – they were telling me directly lies. I am now at the Urology Clinic of Colorado. At the Clinic they do have a monthly support group, but it is comprised as much as I can determine only guys with their wives or daughters in attendance.
I was able to get into a clinical study with the treatment plan of a Lupron shot every three months, which ceases the production of Testosterone. I am also in a 9-week radiation treatment plan that really saps my energy.
Getting an erection is possible with a great deal of work while ejaculation is a surprise. I am a member of a gay nudist group here in Denver and it is depressing to see other guys naked while my penis remains soft for the most part.
For that reason, I find myself not wanting to go out a meet other guys or attend any parties. As a guy who has been sexually active since my early teens with a same age cousin, the concept of no sex is making my life difficult.
Teddski. In Washington DC a group of gay men have formed their own support group and meet at a local wellness center. We can talk more openly about our needs. Is there a venue (gay center, wellness center) that might facilitate the formation of a group? Ask around.
I’ve been looking for a gay bisexual group of men with prostate cancer in the San Francisco area and I can’t believe I can’t find it. When I talk to my doctor about this yesterday she was surprised that gay men have issues that are different than straight men At least until I started pointing out the differences between us sexually. If anybody knows of a group in the San Francisco area I would love to find out about it because I have 1 billion on answered questions. I am three weeks postop starting to heal and have been waking up with morning erections for the past week. I am 58 years old and have a partner who is 21. Thankful he gets into some pretty kinky stuff like he would be OK with me taking a piss inside him. In fact that would be a big turn on for him. So things are gonna change a little but not a lot.
We started a support group at church (a gay church) but one moved to anther city and one died and the group fell apart. I have changed my life around with new interests since I had PCa for eleven years and lost most sexual desire with time. Things happen in life and we have to change. Some times these changes are good for us. A doctor called me one day in 1983 and told me I had hepatitis B. My lover of 10 years accused me of cheating and broke up, and I used condoms so I would not pass the disease to others. When I was diagnosed with cancer in 2007 I was checked for venereal diseases and I had no diseases! I had two relationships with men that had HIV, one had died. So now I do not have HIV, because of a doctor's false positive test! You never know about life, so just keep truckin'.
I met with my regular doctor and showed him the materials from Restore and got him to send a prescription for sildenafil. He was encouraging. He also said I should wait 6-8 weeks after surgery before using the anal dilators. On the extrovert-introvert spectrum we both tend towards the introverted end so this speaking openly about masturbation, penile pumps, butt plugs and the like was a breakthrough. He is gay so that helped.
This is so subjective depending on the type of treatment and the extent of the cancer. Realize that many doctors tend to dish out the news and implications little-by-little so they don't overwhelm you. So it make take awhile to grasp fully the situation you are dealing with and the longterm (hopefully) consequences. Just try to make it about LIVING and not sexual performance. Your like will change forever in so many ways. If you are younger the sexual part may be more important to you than when you are older. PC sucks and there is no other way to look at. Try to be open to new experiences like meditation if you haven't tried it before. The sex part will come back or it won't. As the old prayer loosely goes, "Give me the wisdom to understand and accpet the things I cannot change and the strenght to change those things that are in within my power." Recognize the signs of depression and try to fight it. Ask for help when needed. Smell the roses and LIVE.
Stick to your guns when learning about your disease and treatment options.
This may not sound gay-specific, but I would argue that every time you are told to not overthink it, not look ahead, not do your own research, to follow without question your plan of care, you are facing the generally accepted credo of what it means to be a man; to be stoic at all times, to never show vulnerability especially when you feel vulnerable, to embrace an authoritarian model (follow, not question). All of these attitudes interfere with your capacity to have a major, if not leading, role in your own treatment path. All of these things interfere with your ability to learn and to process, emotionally, the profound changes that are likely to happen to you in short time.
Please remember:
- Receiving news you have cancer is a traumatic experience for most men; it's okay to feel devastated by this experience and to express your feelings.
- You are entitled to worry about your condition, to ask questions, to question any scenario you can imagine, and you should expect respectful and informative responses to your queries.
- You are entitled to all information on your medical chart.
- You are entitled to disagree with your plan of care, to refuse certain treatments or meds and to seek alternatives for procedures you do not wish to undertake.
- Seeking second opinions for major treatment plans is necessary.
Everyone is different, but I have found that when communicating with a medical professional in a difficult moment, I check to make sure I am keeping my voice low and well-modulated. Maintaining a dispassionate tone somehow works better than get agitated or even angry. Saying things like "I'm an immersive learner and it is important that I understand this," "What is the purpose of this procedure," "I'm not going to do that," help put you in charge and give you agency over your life.
Most men's urology centers are purposely populated with as many men as possible, with entirely good intentions. They think that's enough. Let men run a men's center and voila, everything will be alright! I believe that many gay men have fled that kind of toxic male world view and have built their family and social lives around a different model, one that is more collaborative and diverse. Then we get prostate cancer and dropped into the world of guys with guy rules, like always being tough and never shedding a tear and not asking too many questions.
All I am saying is stick to your guns, demand agency in your healthcare and don't let the toxic male ethos get the best of you.
I'm a bisexual 66 year old. I am 5'8, 155lbs and in pretty damn good shape! I have also been married to a woman for over 40 years. My wife's low interest in sex has caused me to seek regular relationships with men for over 20. These sexual relations have kept me happy and sane. 2 years ago I was diagnosed with prostate cancer. I considered not having the operation because if I fell into the 60% of men who do not regain erectile function, I knew that I would no longer have anything to offer men. I DID have my prostate removed and 22 months later, I have no cancer, am completely continent .... and NO LONGER can have natural erections. Yes, I was devastated. After starting penis rehabilitation, I found I could orgasm.....I was happy that I could achieve at least that. A couple of months later, and after trying different brands, I can achieve great erections with a pump, and am experimenting with different injections to get hard too. With patience, and selectivity, I have met several gay and bisexual men who do NOT have a problem with my inability to get hard. We have sensual, satisfying sex that sometimes involves my soft cock, and sometime my hard cock. These are beautiful, loving men who are just looking for human connection like all of us. I cannot TOP as easily as I once did...but I CAN top. I cannot BOTTOM and have the same sensations as I once did... but I CAN bottom to please a man. Do I have something to offer a hot-bodied 30-something? Probably not..... but that does not mean my sex life is dead.
(post-script...... I have actually heard back from some young guys who are into the kink of me using a pump and are interested in hooking up..... we'll see!)
I think you posted info about a UCLA study that was investigating post PCa treatments and anal sex, bottoming. I completed the interview and questionnaire yesterday. The urologist conducting the study is Tom Gaither (who, btw, is HOT...see his TicToc and YouTube posts). The interview took 15 mins; likewise the questionnaire. The questions were, as one can imagine, very personal - experience with anal sex, issues, concerns, etc. But Tom handled it all very professionally and I was quite comfortable answering his questions.
My reason for writing to you is to ask you to re-post the link to this study. They are looking for volunteers.
Btw, I also participated in the RESTORE study which you posted here. I thought it was an excellent study and the info, meds, toys, etc. that they provided helped me through some very dark days and nights. Thanks so much for the work you do.
1. Don't let people offer you fake support--it will make you feel worse. I've lost contact with most people since getting sick and that's fine with me. The apps are good enough for getting sex when I need it.
2. If you can still get it up, use the lube that looks like semen. That way when you're done f*cking, your partners can't tell that you can no longer cum.
3. If you can't get it up, bottom. Lots of guys, especially on the apps, don't care if the bottom gets hard or not.
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My experience with prostate cancer 
Gayman w prostate cancer
Gay cancer support meeting 
