After much scouring of the internet and being surprised by the lack of resources and information aimed at gay men, I came across this group. I am 46 years old and was recently diagnosed with T2 localised prostate, Gleason 4 plus 3. I have been advised to have a radical prostatectomy and am going in this direction, given my age, the possibility of having radiotherapy if I need it in the future and that it should hopefully be a cure. I am concerned about ED and incontinence and have already started Kegel exercises. My erectile function is good and the surgeon told me that I have a 50/50 chance of returning to normal erectile function within 2 years of surgery without any medication. He said he may have to take some nerves away but couldn’t say the extent until the surgery. I have had a PSMA pet scan and the cancer is mainly on the right side of the prostate but with some on the left too. I’d be interested to hear what people have to say about ED and incontinence. I am also currently single and to be honest am worried about the implications for a future relationship. I guess though if someone was put off by the inability to ejaculate for example they aren’t the right person for me! Sex is only a part of a relationship. Any comments would be greatly appreciated.!
After many years of support groups of gay men with prostate cancer, I have concluded that gay men should never (there are only a couple of rare exceptions) have prostatectomies. Please read this before deciding:
"given my age, " Your young age is exactly why you should not have surgery. About 20% suffer permanent incontinence - with about 40 years to live, that is a long time to suffer. Also, you are at your sexual prime now - what is the sense of choosing a therapy with the worst chance of maintaining your erectile function? There is also a high probability of size loss and climacturia.
"...the possibility of having radiotherapy if I need it in the future" A common misunderstanding. If radiation fails to cure you, there are many good salvage therapies (not including salvage surgery).
Salvage radiation after failed prostatectomy has a much higher toxicity, especially urinary toxicity, than if radiation were done as the primary therapy.
"... and that it should hopefully be a cure. " The cure rates for contemporary radiation for unfavorable intermediate risk PCa are a lot higher than surgery. Unlike prostatectomy, radiation treats a margin outside of the prostate. Compare these stats for unfavorable intermediate risk patients:
In the UK, I recommend you talk to Alison Tree at the Royal Marsden for SBRT and Peter Hoskin at Mt Vernon Hospital for HDR brachy monotherapy. Those 2 treatments have the highest rate of potency preservation and the highest cure rates.
I’m 52. Unfortunately my cancer (Gleason 9) had already spread outside the prostate and the urologist said “no surgery for you!”. That was hard to hear as I was expecting surgery plus radiation and ADT considering my Gleason score. Having finished all of my radiation, I’m actually glad it worked out the way it did. (The Urologist did a horrible job of explaining why he would not do surgery.).
My radiation oncologist was outstanding explaining how, since I’d have to have radiation anyway, why bother with surgery and all of the associated side effects. He also did a great job showing me (with my MRI and CT images) exactly how they would contour the radiation and target the pelvic lymph nodes as well as the prostate / seminal vesicles (in addition to a small bone met I have). I feel that I got a much more personalized, precision approach with the best radiation technology. Total confidence in my RO and his team. The Urologists…absolutely not That Urology “team” was a clown show to deal with just with my initial diagnosis I worry what it would have been like post-op in that circus if I had side effects
For the reasons above as well as what Allen listed, I’m glad I didn’t get surgery. I finished 24 January and my side effects are minimal and improving daily. I’m getting good erections even though I’m on ADT and glad I didn’t have to deal with incontinence
Go see a radiation oncologist who specializes in prostate cancer at a major center that does lots of radiation. I’m so glad I did.
I have to agree with the previous two commenters. I regret having a radical prostatectomy over two years ago. Now I have total erectile dysfunction and incontinence. Where I’m from it seems that RP is the favoured treatment and we are given little information on alternative therapies. I was also T2 and Gleeson 4+3.
I would say that you should get a second and even a third opinion before making a decision on which therapy is best for you. You have time. Best of luck.
Domdela, everyone's cancer is a little different, and you should strive to be as well-informed about the treatment options available to you as much as possible. This site is definitely a good resource. I knew nothing going into my RP a year and a half ago. My prostate cancer diagnosis with a Gleeson score of 4 + 3 took me by surprise, as it apparently did my urology team, who strongly urged RP. I got a second opinion from a leading specialist in PC at Harvard Medical School, and he concurred with my urology team. So, I went ahead with the surgery. The urinary incontinence was awful for the first few months post-surgery, but over time it has gotten substantially better. Nevertheless, I still have light leakage, especially in the evening before bed, and I am never without pull-ups, changing twice a day. I can live with my current condition of incontinence. The ED, on the other hand, has never returned satisfactorily. I tried all the FDA-approved treatments for ED, and I could not tolerate any of them. I had terrible side effects from the pills, and significant pain from the injections - both Tri-mix and Bi-mix. I am now able to get spontaneous erections, but they are short-lived, and never hard enough for penetration. I have also lost length and girth in my penis. Even self-stimulation is uninspiring. Whenever I broached the concerns I had with side effects of RP to my surgeon, he always countered with, "But, you're cancer-free." Well, as it happens, a little over a year after RP, the cancer has returned. And now the recommendation is radiation therapy and ADT, both of which have their own additive side effects. I started ADT about a month ago, and I will start radiation treatment in a couple of weeks. I am already feeling sluggish, and my libido is nil. I am told the side effects will greatly improve after treatment in 6 months. I don't believe them. At 62, I have already given up on ever having an active sex life again. Still, I am fortunate in many ways, not least of which is that I have a wonderful partner who loves me regardless. But I would not want to be only 46 and single and experiencing these side effects. Tall_Allen always offers excellent advice on this site, and I suggest you listen to his counsel. Good luck in your journey, and do let us know what you've decided and how it is going.
I empathize with your search frustration re resources search Amazon for the several gay men and prostate cancer books; search PubMed and scholar.google.com for the many articles on gay men and prostate cancer; watch videos from the Pride and Prostate Cancer conference at YouTube.com/Malecare (click Subscribe). And there’s Malecare.org (sign up for newsletter)
So sorry to learn of your diagnosis; it is a lot to deal with, especially at 46. It sounds as if you are asking good questions and preparing yourself for a good outcome. Kegels = good. I do however concur with the other responses here that the surgery is both radical and highly invasive, and I would advise a course of radiation therapy with a good radiation oncologist who specializes in prostate cancer. Demand answers on side effects and post treatment sexual function. My doctors were cool and knowledgeable, but I had to initiate discussions on sexual function. I would advise a PSMA, pelvic MRI, and Bone Scan before making treatment decisions. Your oncologist will need these to determine if there is any spread and to help "map" where to target the radiation beams.
My EBRT radiation treatments went well. I was diagnosed (Gleason 7) in Feb 22, and I did 28 sessions, over the summer, and the resulting baseline PSA is now less than 1. The doctors said "you have beaten PC". I am lucky with this outcome. I had minor continence issues after completing treatment and went on Flomax, which I have since stopped.
Now, the erections are pretty good, but the orgasms are "dry" with no, or little ejaculate. I am a top, and really liked getting head and delivering a nice load for my oral partners, something I enjoyed since I was 15. My reduced functionality has adversely impacted my sexual confidence and identity. Before treatment, I eagerly enjoyed a roster of 5 or so FWBs. I told each of them about my reduced functionality and gave them the option to bail out or not. Two stuck with me; our sessions are not nearly as fun as they once were, and I am sensing a loss of interest. I am now essentially mourning my lost sexual performance and identity. Given this new reality, I am considering some new paradigms perhaps where I will provide the oral sex I once eagerly received and/or wanking with porn, something I still enjoy. Perhaps I can find a relationship or play partner that can thrive with my new reality. I see now that my pre-cancer promiscuity and sexual arrogance may well have been a factor in my staying single.
It is perfectly OK to feel scared, overwhelmed, angry, cheated, sad, old, damaged, emasculated, helpless, terrified all at the same time and back again. Feel what you are feeling when you are feeling it. Talking with a therapist and trusted friends can get you out of negative thought spiraling. Remember that the end game here is always to beat the cancer thoroughly and in the first course of treatment. There is a book that helped me:
Gay & Bisexual Men With Prostate Cancer (Ussher/Perz/Rosser)
I got my copy on AMAZON. Good luck to you. I get a vibe from your post that you will handle this with grace and dignity, and your outcomes will be good.
hey there, I recently found myself in a very similar position. I started looking for sources of info for gay men and received good info from guts on the Reddit sub and here on HU. There is more out there than you found at first. I would also direct you to MaleCare on YouTube as well. So many videos on car, choices, diet, integrative medicine and with interviews folks that work with gay men going through the process. Happy to chat more if you like.
Best advice I can give is to not be rushed into treatment and don’t let fear take the wheel. So much info and experience out there. Best wishes and look forward to chatting.
My 2 cents worth: I completely agree with Tall_Allen. As he often says, to a man with a hammer, everything looks like a nail! Likewise, for surgeons. My uro "encouraged" surgery but, after some research and finding this site, I decided on radiation and am VERY glad that I did. I had 25 IMRT "fractions"/sessions and a brachy boost and ADT. Almost 5 yrs later, I can maintain an erection and can orgasm (no ejaculate of course), no incontinence or any other nasty side effect that is typical of surgery. I am very lucky. Hope you will be as fortunate as I was/am.
This is a great site for getting information and sharing experiences, like you I was under 50 when diagnosed and opted for a RP, which my NHS surgeon thought was the best option. There was very little information provided but I just wanted that little black pea sized growth in my scan gone. I think after listening to comments and thoughts on here over time I should have waited and got more information before taking that first step on this crappy journey.
The operation was a relative success but the after effects hard to get my head around, as it took nearly 2 years for me to get anything like a decent erection and although I am continent all the time when sober, just a few beers and I will be leaking. I and my partner at the time could cope with that but I will leak a bit when getting sexually excited even now. That used to freak my partner out, which frustrated me as he liked my sperm on him but now it was a little pee instead he was objecting.
Needless to say he is history, but getting a fresh partner has its problems as not only do you have to explain about the lack of semen but also advise it has been replaced by a less thick liquid.
I was disappointed too when 4 years after my RP my PSA started elevating again, so had salvage radiation. It knocked it down again but has been slowly creeping up again since.
I guess what I am saying Dominic is, get as much info as you can, the NHS does now provide a bit more than that I got at diagnosis. It is a huge time in your life and one that needs a lot of consideration of the options available.
Good luck and best wishes mate, stay positive if you can.....there will be times when you will get a bit overwhelmed by it all. I know I did and still do sometimes. Sometimes?....a lot of the time.
Sorry to hear of your diagnosis, Dominic. I'm gay and single, and was diagnosed with PCa at 52. I had a radical prostatectomy where everything came out cleanly, but the surgeon took one of the two nerve bundles that cause erections.
I do have mild stress incontinence that's tolerable (I wear a pad as insurance), but my erections have been impacted substantially. I get about 50%-75% which is enough to achieve a dry orgasm, but not enough for much of anything else.
My surgery failed and I went through 35 sessions of salvage radiation therapy with concurrent androgen deprivation (hormone) therapy last summer. It's too early to tell whether that was effective or not. The short term side effects of those combined treatments were not insignificant, but they have waned over time. I'm worried about the longer term side effects from radiation that may not show up for a few years yet.
My thought process was similar to yours when it came to selecting treatment options, and I'm not sure I would make the same choice again. Tall Allen offers many good points against surgery at your age, and I would think long and hard before making your decision.
Just catching up on the thread here. I'm glad you found this site. You will learn a lot here and get a lot of support.
The first thing I'll say: Do not rush into treatment and be railroaded into one modality (usually surgery) until you've examined all the options for your situation.
I was two weeks out from surgery in January 2014, T1, Gleason 3+4. I had talked to a few people who had had surgery and were doing OK. Then a friend referred me to Tall_Allen and the gay men's support group here in Los Angeles. My original urologist had recommended surgery (because, of course, that's what he did with the expensive equipment he had at his part-owned surgical center. I later dropped him for other reasons. He later went on to tout HIFU because that was the next profitable m.o.)
The first thing my new urologist at UCLA said was, "Either surgery or radiation will be effective for you." With the help of Tall_Allen, I then saw another surgeon, a brachy therapy specialist and a radiation oncologist at UCLA. I went with the latter and had SBRT. Over the next several years, I watched my PSA drop from 5.3 to its nadir, 0.1. (It's now at 0.21 after starting testosterone replacement therapy, which I have been assured is nothing to worry about now.) Other than some rectal pain that disappeared six weeks after treatment, I've not had side effects, though I take Cialis to help with erections. I may explore Tri-mix.
I hope you'll read the links Tall_Allen posted. It's important to know the questions you need to ask your doctors and to not be intimidated if they get huffy.
I know gay men who are comfortable with having had surgery; I know more who aren't and wish they had had the option of radiation. Everyone's situation is different. And though it's hard to make generalizations, I think everyone on this board would agree that gay men come at this differently than straight men.
Finally, while no doctor can ensure a certain outcome, it is true that no surgeon can guarantee an absolutely nerve-sparing procedure. That might happen, but they can't guarantee it (and they're likely not going to stop the surgery when they determine that and then let you opt for radiation). So you have to decide what risks you'll take.
All the best! — Nick
Thanks all for your helpful responses. A lot of people have said that I have time to think through my options. I was diagnosed on 10 Jan this year and the cancer is T2 and G7 (4 plus 3). I have been told that prostate cancer is slow growing but how long realistically do I have to make a decision? Thanks in advance. Dom
Dominic, I'm not a doctor but I think an oncologist would say you have a few months to decide --- but don't go by me. Please ask a radiation oncologist that question, not a surgeon.
I have to back what Tall_Allen and others have said. While some urologists are great -- like mine, who is gay -- others do not offer all the options even-handedly. If they did, most guys would opt for radiation and not surgery. It seems too easy to just say in general that surgeons (which is what urologists are) like surgery -- but it's as simple as that. You need to look at everything, particularly because of your age.
I had more favorable intermediate, 3 +4, but it would have been the same choice, no matter: radiation. Have had no erectile function decline; retained orgasm with semen (though diminished amount of semen, but not dry, as with RP): no incontinence or urinary issues; able to have any kind of gay sex I want and it's still immensely enjoyable. You might want to read my posts here.
Take your time and look around at radiation options --- and talk with a radiation oncologist right now. Understand that most doctors are not clued into the priorities of gay men, unless they are gay themselves.
I'm sorry you have to be making these tough decisions. The only thing I can impart with 20/20 hindsight and reading all of the comments on this thread is to make sure to have a consultation with a reputable radiation oncologist (or 2). I wish I did. I wasn't aware of this site when I was going through my decision making process, and I wasn't finding clear information on other options on my own (plus I was just overwhelmed emotionally with the diagnosis and had limited appetite for research). I had a RP 13 months ago and I just started radiation last week since my PSA was climbing slowly over the summer. I had 3 lesions and my initial Gleason score was 8 (4+4) and was downgraded to 7 (4+3) after surgery. Aside from a few months of incontinence after the surgery, I've been fine in that regard. And my side effects from ADT (I'm taking a new drug called Relugolix) have been minimal. I have some muscle loss, fatigue and minor hot flashes, but otherwise I'm still up and around and I'm at the gym 4 times a week. Good luck with your decision making. Take your time. Talk to a lot of people.
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I'm 9 months post prostatectomy and the ED (and penile rehab) continues...
Hello to all from someone with RP, ADT, and IMRT
Interesting story from the oncologist, and also my experience with Trimix.
Facing a diagnosis of PC and dealing with a therapy
