No treatment. No faith. No hope. - Prostate Cancer A...

Prostate Cancer And Gay Men

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No treatment. No faith. No hope.

crazysexyfun profile image
20 Replies

I was diagnosed with prostate cancer 2 years ago at age 56. I have decided to not have treatment since my doctor said I would never be able to have an erection again, and as a gay man that would be a living hell to have much desire but no outlet. I have no faith in anything or anyone, much less a higher power. As someone who has battled mental illness and depression since age 22, frankly death at this point would be a relief. I thought I would never live to age 30, much less 58. My PSA is currently hovering around 6.5, and I am at peace with my decision.

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Tall_Allen profile image
Tall_Allen

I agree with you that gay men should never have a prostatectomy:

prostatecancer.news/2021/12...

Your doctor said that because the doctor you went to see was a urologist who knows nothing about curative radiation therapy.

I got SBRT 13 years ago - I'm cured and I never had any ED. I can't promise zero ED with SBRT, but only about 25% of men getting SBRT experience ED, and most of those are older men (over 70).

crazysexyfun profile image
crazysexyfun in reply toTall_Allen

I've noticed that urologists like to almost insist on surgery. I think doctors like that really just like to cut people. I never heard of SBRT treatment. I'll check it out. Thanks.

Tall_Allen profile image
Tall_Allen in reply tocrazysexyfun

"To a hammer, everything looks like a nail."

dlste353 profile image
dlste353 in reply toTall_Allen

TA, I respect your knowledge so much. Just wondering why you say no gay men should have a prostatectomy? I know many gay men who have had one and have a great sex life. For most, losing the prostate does not diminish the pleasure of receiving. And I think since gay men have more options for sex, they are better equipped to enjoy sex if they developed ED than straight men are. I believe the choice of treatment should depend on probable outcome and what the patient feels comfortable with, and not about sexual preference. Just curious about your thoughts. Thank you.

Tall_Allen profile image
Tall_Allen in reply todlste353

If you are not gay, or do not work with gay men, you have no right to an opinion.

dlste353 profile image
dlste353 in reply toTall_Allen

Wow! I was not expecting such a response. I AM gay and I HAVE had a prostatectomy. I did not mean to be challenging you in any way. I simply wanted your thoughts on the matter. As I said, you are a wealth of knowledge and I always respect what you write. I certainly apologize if I offended you in any way. That was not my intention. I am fighting this battle along with the rest of you and come here to learn and for support.

Tall_Allen profile image
Tall_Allen in reply todlste353

Sorry to respond so strongly, but I often get responses from well-meaning straights who really have no idea what it's like, and don't understand why being gay should make a difference. It does:

prostatecancer.news/2021/12...

Bezdomny profile image
Bezdomny in reply toTall_Allen

By your own logic, since you have not had a prostatectomy, you have no right to an opinion about it.

Tall_Allen profile image
Tall_Allen in reply toBezdomny

Bonkers to equate living a lifetime of being gay with a single therapy.

Miccoman profile image
Miccoman

Carefull, crazysexyfun, they told me I had 5, maybe 10 years, back in 2014.

Now they say another 5, if Pluvicto works. So don't plan on getting out of this quickly. And your PSA can get amazing high before you go. Mine's 99.7 and doing nothing still leaves me with a year or two minimum.

I had lots of crazy sexy fun back in my day -- I came out before AIDS. Never found a man to settle down with, though -- probably too much beating my worthlessness into me as a little boy. Seems no matter how much dad beat me for being a little "nancy boy" and weakling, etc. he never managed to get rid of his feelings for men...

And with the cost of care forcing me to be poor, I too have been living in depression, isolation and feelings of despair. I finally had such a horrible experience, from a LGBT "supportive" place that I've just shut down again. You know, no emotions, don't let them see you vulnerable because they'll just hurt you.

So now I cope by being all closed up, rejecting anything that makes me feel. I, too, look forward to release and it can come none to soon.

I hope you decide to have some final crazy sexy fun (on the bottom if all the ED help on the Gay Men's board doesn't work). Trust me, look for fun and pursue it at every turn because the doctors and the dying is awful.

Oh, and ADT (Androgen Deprivation Therapy) does take away desire, so that drive for sex that defines men goes away and you are stripped of that identity as well. A plus for some, for most not so much.

crazysexyfun profile image
crazysexyfun in reply toMiccoman

Thanks for your reply. I'm so sorry you've had such a hard time. There really is no justice or god in this world when good people like you have such challenges and other people skate by. I myself have been dead inside most of my life. With my mental health challenges I assume I'll probably kill myself before it gets too bad. The ennui and boredom I have is unbearable at times, so my attitude is one of not caring about anything. I'm a bottom anyway, but am going to still refuse the surgery since without a prostate then what's the point? I hope things get better with you, and just know that your life does indeed matter, and that you and your story are heard.

I am 4 1/2 years out from SBRT and never lost desire or ability in treatment. I was very lucky to find a radiation oncologist who was honest about options and outcomes, unlike two urologists who lied about their work and the alternatives. The Radonc did not promise perfection but came close to delivering it. Give a radiology consult a try.

nacinla profile image
nacinla

Hi. I was moved by your post and wanted to offer my experience. My PSA was around 6 when I was diagnosed in January 2014 (really late 2013). I was about two weeks out from surgery when I was introduced to TallAllen and the LA gay men's support group. I learned there were other options. I had SBRT and watched my PSA drop over the years. It appears I'm out of the woods. Everyone's situation is different, and not knowing your other numbers and not being an expert, I can't suggest what you "should" do EXCEPT: get more information. My treatment was painless (afterward, I had some side effects others don't experience but they've gone away). My point: Surgery isn't the only option and ED isn't the only destination. Countless other men have made it through this challenge without those.

I also would not presume to prescribe for your depression, except, again, to share what helped me with that: cognitive therapy and learning more about the distortions with which I was filtering reality. Again, I would not presume to offer a "should" for you.

I hope you find the support you need here. Lots of great guys with compassion.

crazysexyfun profile image
crazysexyfun in reply tonacinla

Thanks so much for your reply. I'll check those options out.

nacinla profile image
nacinla

what city are you in, if I may ask? TallAllen can point to resources just about everywhere in the universe. Also, ignore the schlocky title, but the first 50 pages of “Feeling Good, the New Mood Therapy” helped me A LOT.

crazysexyfun profile image
crazysexyfun in reply tonacinla

I'm in Nashville, and am already checking out the available locations that offer that. I'll also check that book out, but after 30+ years of involvement with the psychiatric community and literally truckloads of drugs (many of which I'm still on), please forgive my skepticism. Thanks again for the info on SBRT. If that was one of the treatments my Dr. went over with me, I was probably still in shock and it didn't register.

Bezdomny profile image
Bezdomny

Dude, you have a shitty doctor if he/she promised you would never have an erection. Saying that you would never have an erection is pretty much like guaranteeing erections after treatment. Truth is, you just don't know...it is different for everyone. And if you are indeed "at peace with your decision", why post here?

Like you, I was diagnosed in my 50's and my PSA was higher than yours. My cancer was termed aggressive and I had a prostatectomy. My PSA was below zero for a time, but started creeping up again, so I had radiation and testosterone blocking treatment (firmagon). That did a number on me in ways beyond not getting an erection, but my PSA has been undetectable for years and I can still get erections--sometimes damn good ones. Is it like before? No, but I am in my 60s now--and still alive.

So even without a prostate there is hope. I do wish I had looked more into other treatments and I encourage you to do so. But doing nothing will eventually cause you considerably more issues than having trouble with erections (and likely affect that as well).

Ram17 profile image
Ram17

A prostatectomy will surely mess with erections for sure. There are many ways to overcome the issues, from pills to shots to implants.

I do respect your decision. I was kind of in the same boat. I had the surgery but the cancer had already escaped. Tried another surgery that did nothing. Then we tried chemical treatments. They worked but destroyed my quality of life. I finally decided to stop everything and enjoy the time I have left. I decided I would enjoy my time versus having more of a miserable life.

Right now my PSA is over 4.0, it should be like 0.02. I've had no treatments in 3 years now so the growth is slow. I go with mind over matter. I'm 65 now. Been messing with this crap for over 6 years now. I get up every day and go to work. I travel a bunch but I figure if I stop, cancer wins. I live in Texas in the USA, right now I am in Australia for work and site seeing. Walked my legs off today.

I believe if you keep doing what you want and need to do, you can keep going for a lot longer than the doctors think. Keep looking forward to tomorrow.

SonomaGuy profile image
SonomaGuy

I totally understand, and I thought that way myself sometimes however don't give up yet. I was diagnosed October 2020 and I've been on active surveillance because of the exact same reasons as a gay man, that became single shortly before diagnosis, it's a difficult killed a swallow that you may never be able to have sex, or will be incontenant . what are your scores regardless of your PSA? mine hit 5 when I got my biopsy. Which subsequently caused sepsis, nearly killing me, and shooting my PSA up to 8 where it's been kind of hovering. However, it's been three years and in all of my MRI since that there has been no change in the small lesion. So I'm sitting tight, not not doing anything, but rather active surveillance is treatment. I'd be interested to know what your biopsy scores were. Mine was initially three cores with Gleason six. However, I sent my tissue samples to Johns Hopkins for another opinion and they came back with one core Gleason six, and after economic testing revealed that it's low risk of metastasizing. So I do watch it with annual MRIs and I'm going to have sex as long as I can. I'm a vers top and 58. If and when I I have to do more advanced treatment, I will cross that bridge when I come to it and. bottom.

ejefowe profile image
ejefowe

I'm a closeted bisexual married guy with adult kids and a wife whose libido is almost none. I have been keeping my sanity by having sex with guys since my 40's. Prostate cancer runs in my family so my urologist had been watching me closely. My PSA was around 5 and the following biopsy had 2 samples of Gleason 7. I seriously considered NOT having the RP after hearing the 40% chance of never being able to get back my erections. Sex has always been a VERY important part of my life and spirit and I was really unwilling to give it up. But with children and possible grandchildren in my future, I wanted to stick around for them. Now here I am , 65 years old, 17 months post surgery. I have been continent since 3 months after but no glimmer of an erection no matter what I try. The injections work ok and I finally bought a pump that actually works, but neither are good enough for an erection to use for penetration. I have a patient lover who is along with me for the ride as I figure out what works and what doesn't. Unfortunately that lover is not my wife. Thankfully, these forums are an oasis of shared information , emotion and support.

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