Prostate cancer

[likaleather]

This seems to be one place to get firsthand information.  Not looking for medical advice just experiences from others.  I have a referral to see a urologist due to results from a blood test.  PSA level was 5.7 (but dropped a month later to 4.7) and the free PSA was 14%.  Those results put in at a 24% chance of having prostate cancer.  I've been doing research and it looks like this diagnosis has more of an impact on gay men than straight.  I'm hopefully jumping the gun and have nothing to worry about.  I'm hearing lots of doctors (and people in general) want to jump and remove the cancer (aka prostate in this case) and there could be other options.  Anyone have any experience or thoughts?

[phillygwm]

I was diagnosed when I was 45; my doc had been monitoring me because of a family history of early onset prostate cancer.  Thankfully, mine was caught very early.

I opted for radiation rather than a radical prostatectomy because I was (or wanted to be, at least!) sexually active.  So against the advice of friends, I got brachytherapy.  This was 15+ years ago and that's no longer the standard of care but I'd definitely recommend radiation:  Easier procedure (same day surgery), I was jerking off a few days after, back to work in 5 days, etc.  Downside was that it hurt like hell to piss for a while after.  And years later, I had urethral strictures.  But minor compared to what might have been and I'm just as cured as someone without a prostate.

Feel free to hit me up privately, if you prefer.

[phillygwm]

Sorry, I should have added this to my prior email but it's been a while and some things didn't occur to me immediately.  I know this is long, especially considering the last post, but you'll want all the info you can consume if you wind up having PC.  Hopefully, that won't be the case!

I was on an online group for gay men with PC.  They were very helpful.  Google "Gay men prostate cancer".  I should have stayed to pay it forward a bit but I wanted to get my mind off things.  But the more people you speak with, both docs and patients, the better informed you'll be, medically and emotionally.  I chose the 4th doc I spoke with.  But you're correct: gay men have different issues than straight.  For instance, you're probably familiar with the questionnaire you fill out at the docs every time.  One of the questions is whether you can confidently get hard enough to penetrate.  Well, that standard is different between an ass and a vagina and, in any case, someone may be a total bottom!

I'd also recommend an NCI designated cancer center.  Even if your case is routine, stuff happens.  If it does, they've seen everything.  That might not be the case in a community hospital.  I was lucky to have 3 such hospitals in my area.  I chose the smallest one.  I didn't have a guy who specialized in gay men but if you find that, all the better.

I mentioned radiation, which was an unusual decision that I'd absolutely do again.  Not so much the permanent seeds, since that's no longer the standard of care.  But maybe cyberknife, proton therapy, etc.  I haven't stayed up on all the options but they're better than they were in 2011. 

Your doc will 100% recommend surgery because he can do that.  You'd need a radiation oncologist for other options.  Of course, the vast majority of folks opt for surgery because it's assumed that if you have it out and the biopsy shows clean borders, you're cured.  I was speaking with a guy who was also 45 at the time of dx, with a young family.  He was talked into surgery for this reason:  He wanted certainty more than quality of life.  I think there have been advances on the surgery side as well but I don't keep up on it.  But ultimately, some people will require radiation anyway and he did (as did my father, which influenced my decision) so what did surgery buy him?

My father was dead (not PC related) by the time I was dx'd so I couldn't ask him questions and he never went into a lot of detail at the time.  In fact, I only learned from my aunt that my grandfather died of PC when I was an infant.  He was 57 so he probably had it in his 40s as well.

Edited Tuesday at 11:38 AM by phillygwm

[likaleather]

Thank you for a thoughtful and well worded response.  I'm going to look up that support group.   I'm hoping I want have any deciision to make past having a biopsy.  I'm going to look up NCI.  I lost my mother to cancer so I have that knee jerk reaction but I watched her suffer through treatments that did little good for her.  I'm still waiting to get an appointment.  The referral was about 2 1/2 weeks ago.   I've called to check up and they schedule men depending on the severity of their numbers.

How many sessions of radiation did you have?  My plan is to ask question and not jump into any decision.

[phillygwm]

On 2/26/2026 at 5:13 AM, likaleather said:

Thank you for a thoughtful and well worded response.  I'm going to look up that support group.   I'm hoping I want have any deciision to make past having a biopsy.  I'm going to look up NCI.  I lost my mother to cancer so I have that knee jerk reaction but I watched her suffer through treatments that did little good for her.  I'm still waiting to get an appointment.  The referral was about 2 1/2 weeks ago.   I've called to check up and they schedule men depending on the severity of their numbers.

How many sessions of radiation did you have?  My plan is to ask question and not jump into any decision.

There are 3 NCI-designated cancer centers in NC:  Duke, UNC, and Wake Forest.  

Obviously, I hope you come back with a negative biopsy.  I had one as well, but my PSA kept going up and I came up positive a few years later.  As an aside, not to scare the crap out of you, but the prostate biopsy was rather unpleasant.  Imagine someone sticking a dildo in your ass.  I'm a top so that itself was uncomfortable.  Now imagine it shoots about 20 needles into you.  Some were OK.  Occasionally they (literally) hit a nerve.  I was so hesitant the second time, the doc promised a "saturation biopsy" where they take twice as many samples...but you're under for it.

I only had one treatment.  It was a surgery where they implanted ~80 iodine 125 seeds in my prostate, called LDR brachytherapy (the seeds are still there but no longer radioactive.)  As I mentioned above, that is no longer the standard of care.  I chose that option for a couple reasons, sexual was the primary one but recovery time was another.  I left my office at noon on a Tuesday and did colon prep.  Same day surgery on Wednesday.  I slept a lot Thursday and Friday but was checking my Blackberry (dating myself!)  Went to a basketball game on Saturday (I'm so butch!)  Back to work on Monday (albeit a desk job.)  It felt like I was pissing shards of glass for a while but, given the same treatment choices today, I'd make the same decision.  But ask about proton therapy and cyberknife.  I've heard good things about both but haven't stayed informed on all the current options.  

I can still cum.  If it's a quickie I won't shoot but I'll have the sensation.  If I'm edging I actually shoot a bit.  They had me on Flomax for a while and that causes retrograde ejaculation which is a really strange feeling.  I was happy to discontinue that.

IF you come up positive, you'll have a Gleason score, which ranges from 1-10. 1-5 is non-cancerous.  6 is early stage, if you're a 10 you might want to update your will.  DO NOT make any hasty decisions.  Get an opinion from a radiation oncologist.  Different ROs have different treatment specialties so you may want to see a couple.  After all that you may still opt for removal.  That's fine, as long as it's an informed decision.  You need to advocate for yourself because nobody else will.

Good luck and keep us posted!

Edited 13 hours ago by phillygwm

[URS2USE]

I was just diagnosed with prostate cancer.  The Gleason scores on my 12 biopsies were 1 3-3, 1 4-3 and the rest were 3-4, which put me in the treatment category.  I am someone that does research above the normal.

I've already talked to a Radiologist and Urologist about both radiation treatments and prostate removal.  I used to race bicycles for what is now called the "LiveStrong Foundation" and contacted their prostate cancer Doctor on call as well.  They all said that the radiation seeding, the freezing and the heating techniques were already outdated and weren't recommended for treatment much any more. 

I had heard about this procedure called IRE...the brand name is called "Nanoknife"... where they insert needles into the prostate and send electrical currents through the actual cancer cells destroying the membrane of the cancer cell itself.  It is still in the trial stage with only 121 participants so far, so my Blue Cross Blue Shield will not cover the estimated $35,000 cost.  Money not being a real obstacle for me, i actually spoke to one of only a handful of Doctors that perform IRE here in the United States...Dr. Brent Sharpe at Georgia Urology...and he was very frank about the procedure.  It is only 25-85% effective at this time and may require a 2nd treatment.

All three of my doctors recommended both a decipher score from my 4-3 biopsy sample and a PETscan before i make any decisions on which of the three procedures to have done...PETscan is to show if there is any other cancer located in my body and is scheduled for next week. The decipher score will let me know if I'm in the "Upper Abnormal" or the "Lower Abnormal" score.  There is a clinical trial still going on, so if I'm in the "Lower Abnormal" half, my radiation treatments will be paid for by the trials.  But I will have to take a testosterone-reducing drug to qualify, which I'm hesitant about doing.

A couple notes about the three...if you do radiation treatments, none of my Doctors recommended having my prostate removed if the cancer comes back...BUT...the reverse can be done.

Both radiation AND prostate removal will cause me to have permanent "dry orgasms"...no more fluids...but the IRE treatment will still allow me to cum fluids.

The percentages for both ED and incontinence were very close...around 85-90% success rate, especially with the new nerve-saving robotic surgery technology now used.

I love to sound, but sounding is NOT recommended after any of the three procedures, especially prostate removal.

That's about it so far.  If you have any questions, feel free to message me.  I have been researching prostate cancer for about 2 months now and have learned a LOT!

 

[Hungryforbbc]

So sorry to hear this. I don’t have anything to contribute here but I’m sending up love and light for your healthy recovery 

[PozBearWI]

@URS2USE man thanks for being willing to participate in emerging treatments.  And part of the payoff is whether we can get treated and still cum.  

You already know that outcomes are variable; and it seems some of the ability to predict is still being studied; so those estimates are based upon limited information.  My prostate cancer remains in the "monitor" and see how it goes.  

I hope you share more of how this evolves for you; and if you proceed with IRE how that unfolds for you.

 

Hugs brother, I wish you well. 

[URS2USE]

7 minutes ago, PozBearWI said:

@URS2USE man thanks for being willing to participate in emerging treatments.  And part of the payoff is whether we can get treated and still cum.  

You already know that outcomes are variable; and it seems some of the ability to predict is still being studied; so those estimates are based upon limited information.  My prostate cancer remains in the "monitor" and see how it goes.  

I hope you share more of how this evolves for you; and if you proceed with IRE how that unfolds for you.

 

Hugs brother, I wish you well. 

Thanks PosBearWI...if guys here want me to, i will give updates on my progress.  May yours stay in the "monitor" stage!!!  The thoughts of being a very active 66 year old and then not being able to get an erection and/or having to wear a diaper or even the best scenario, not being able to actually cum fluids during an orgasm are really fucking with my mind.  Thanks again for the hugs!!

Edited 3 hours ago by URS2USE
Added thoughts.