Prostate Cancer in Gay Men

[Mavica]

Whether we be a top or a bottom, the prostate in gay men is hugely important to our sexual / social life.  14 years ago (when I was 59) I was diagnosed with prostate cancer ("PC").  Whenever we're told we have Cancer, we assume the worst; oftentimes, for good reason: the "end" is near!.  My PC was diagnosed as consuming 12% of my prostate.   Instead of "watchful waiting",  I  chose to have my prostate removed (it doesn't belong in me, get it out!). 

Anticipating the Urological Surgeon's caution that it was likely I'd lose some length and firmness/rigidity of my dick post-op (which turned out to be an accurate prediction), I postponed surgery for a month so that I could visit Rio de Janeiro ... and I could have fun in Rio de Janeiro (GP, and some women for hire).  For most of my life I was a "top".  Most importantly, I wanted to fuck as many stunningly handsome guys as I could before surrendering my erection to the surgeons.  

Post-OP, the removed prostate analysis revealed that it was 25% consumed by PC and had not, to the best of the knowledge of my Urologist, metastasized (thankfully).  Very lucky me!

So, it's not been easy post-op.  I'm unattached, no partner.  My focus on sexual satisfaction has changed.  I enjoyed a spectacular period of time during pre-op which I enjoyed/excelled being a "top".  Fantastic memories, thankfully.

Any others on this forum who have had PC, and surgery?  😁

 

[Moses]

I had PC 5 years ago.

Thanks to my habit to make yearly blood tests for cancer markers, it was recognized by PCA markers in blood when it was on 2d stage. Since it grows slowly, I had enough of time for MRT and other checks and tests including biopsy and unlimited sex within 1 year (I'm "top only"). 

My oncologist told what best is prostate removal because tumor was located within prostate capsule and offered robotic operation with saving of penis nerve paths. I spend only 5 days in hospital because robots does surgery via holes in stomach. Indeed length became 1"-1 and 1/4" shorter. Also about 2 weeks after catheter removal (on 10th day) I had small urine leaks when had coughs or during stand up from low chairs, so there were pads in my pants for 2 weeks and I used them 2 week more "just in case". Such pads are invisible (only 2-3 mm thick) for to use, because leaking is just few drops "per case". 

After surgery I had to make PSA tests every 3 months for to be sure what there are no metastases at fist 3 years, now every 6 month till year 7th, and also yearly KT scanning with contrast.

Thanks to nerve saving robotic surgery, I got hardon back in full in 1 year, but had to use Cialis during that first year (first sex was in 3 weeks after surgery). Since prostate is removed, I have no sperm anymore, but have normal orgasms.

[Mavica]

Thank you for your comments, Moses, and for sharing your experiences.  

Similar to you, I had regularly scheduled PSA tests; on a yearly basis.  When my PSA number rose unexpectedly, my primary care physician scheduled a visit with a Urologist whose finger examination did not result in any concerns.  However, as a precaution a biopsy was recommended.  The day following the biopsy and before the results were available, I slid into septic shock and was in intensive care for several days.  While still in the hospital the biopsy results came in and it was estimated that my prostate likely contained 12% cancer.  Watchful waiting, radiation, removal (via Da Vinci surgery) ... were options presented to me by my Urologist.  Right then and there I told the Urologist/Surgeon I wanted the prostate removed via Da Vinci robotic.  For me, I made the right decision:  the level of cancer was 25%, but had not migrated outside of the prostate.

As with other surgeries, one patient's experience can be different than someone else.  I experienced severe incontinence once the catheter was removed - which was 2 weeks post-op.  I leaked like water shooting out of a garden hose.  Lesser degrees of incontinence continue to this day, which is annoying.  My primary care physician at the time believed the surgery was not completely successful and I might want a corrective procedure (something I have not acted on).  My frequency and strength of erections has not returned to pre-op levels, which has had a negative impact on my sex life.  Pre-op, I'd have described my sexual activity as 90% top.  Post-op, it's 100% bottom.  Such a change can be, and is, difficult to deal with - psychologically - for gay men.  Thankfully, pre-op ... I'd had 30+ years of a very active sex life.  Thanks for the memories!

When I think about my health history and prostate cancer, I have no regrets deciding to have my prostate removed.  I'm alive.  For this I am grateful.

[scott456]

Yea, it's important to be alive, healthy and happy.

[xpaulo]

Thanks for these posts guys. My doctor isn't the best straight up communicator, but I think she's been saying for the past couple of years I almost certainly have prostrate cancer, but it hasn't reached the point of needing treatment. She's also given me the option of going to a big city to see a specialist and she's been sending my test results to a specialist in Vancouver who talked to me on the phone last winter. He agreed with her I didn't need any treatment or more advanced testing at that time. I had a blood test in July and my doctor didn't call so I assume it hadn't changed, but I'm talking to her this week and I'll ask her. It was to good to read these posts to see what the future might hold for me and also reassuring that it can be dealt with.

[Olddaddy]

Get your prostate checked !!!! 

I do it yearly by blood and by the lovely finger glove up my bum 🤣

[Mavica]

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Potentially the biggest quality of life difference between heterosexual and gay men with prostate cancer is the overall impact of impaired sexual function. Sexual side effects are very common during and after prostate cancer treatment, with erectile dysfunction and decreased sex drive frequently occurring. While the occurrence of sex-related side effects affects homosexual and heterosexual men equally, some research has suggested that these impacts may take a larger toll on quality of life in gay or bisexual men.

Here are links to some informative articles/publications regarding Prostate Cancer in Gay men:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4770844/

https://www.smsna.org/patients/news/heteronormativity-and-prostate-cancer-in-gay-and-bisexual-men

https://www.nbcnews.com/feature/nbc-out/when-it-comes-prostate-cancer-gay-men-are-erased-patients-n929686

https://prostatecancer.net/living-coping/gay-men

 

[Riobard]

I am under surveillance due to long-standing elevated PSA that seems to be in a holding pattern, in fact currently down from previous peak reads some years ago. Had expensive 4K score analysis with Sloan-Kettering, but correlation is not predictive; obviously everybody with CA has/had elevated Kallikrein reads. I have intermittent hyperplasia with tolerable pain voiding. Annual MRIs that are clear to date. Avoiding biopsy so far. However, I would definitely explore focused laser ablation with Sperling Prostate Centre (formerly NYC, now Florida) if it came down to more intervention. I would diligently read up on it beyond what I’ve uncovered so far, as well as the literature on pros and cons of biopsy; or integrate biopsy and immediate treatment in one Sperling visit. I would pony up much cash for the chance of a good outcome that was based on less risk to pelvic nerve plexus damage. No insurance transferable from Canada but a likely tax break based on medical expenses. I could have my prostate removed in Canada for nothing obviously, but the elective surgery infrastructure has pretty much collapsed. 

[Mavica]

11 hours ago, Riobard said:

I am under surveillance due to long-standing elevated PSA that seems to be in a holding pattern, in fact currently down from previous peak reads some years ago.

When my PSA test result showed an unusual increase, not substantial, though, my primary care physician said there was a 53% chance I had Prostate Cancer ("PC").  I was fortunate that my physician was pro-active and on numerous occasions his advice protected me from various severe consequences.  Unfortunately, I now live in Florida where, IMO, care for seniors is substandard ... which can result in life-threatening events.

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Had expensive 4K score analysis with Sloan-Kettering,

Sloan-Kettering, MD Anderson ... exemplary cancer diagnosis / treatment centers.  My PC care was at Northwestern Memorial in Chicago ... an excellent teaching hospital.

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Avoiding biopsy so far.

Some, maybe many biopsy's result in infections and, as in my case ... sepsis.  I was fortunate to have slipped into shock while in my Urologist's office at the hospital where I was rushed into Intensive Care.  

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However, I would definitely explore focused laser ablation with Sperling Prostate Centre (formerly NYC, now Florida) if it came down to more intervention.

 

I've read about SPC and the technology / methods it applies ... which is more advanced from that which I had available when diagnosed with PC.

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I would pony up much cash for the chance of a good outcome that was based on less risk to pelvic nerve plexus damage.

Surgical outcome is only as good as the surgeon and his/her procedures.  

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No insurance transferable from Canada but a likely tax break based on medical expenses.

I'm fortunate to have excellent employer-sponsored health care insurance when my prostate was removed.  The "tab" for the procedure, etc., was US$66,000, but my insurance company negotiated that down to US$33,000.  Out of pocket for me?  Less than US$1,000.

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I could have my prostate removed in Canada for nothing obviously, but the elective surgery infrastructure has pretty much collapsed. 

I've lived / worked in Canada.  The wait for "elective" surgery can be long.  For some, uncomfortably long.  I don't know how cases of PC are classified.  Long term, or short term wait for a procedure.

Thank you for sharing your experiences.

 

 

[Olddaddy]

Free health care in Canada ?

Same as Australia but unless your dying you will go on a waiting list for hospital treatment so I pay private health insurance at $233 a month 

[xpaulo]

1 hour ago, Olddaddy said:

I pay private health insurance at $233 a month

I'm not sure if that's possible in Canada. Despite politicians promises to not privatize health care, there are various private clinics operating across the country for MRIs and other testing. I suppose it would be possible to pay for private health insurance to have a surgery in the United States, but I'm guessing you can't just sign up for it, go to the States for the surgery, and then cancel the insurance. The current problems in Canada are being used to push for more private health care for those who can afford it.

[Olddaddy]

4 hours ago, xpaulo said:

I'm not sure if that's possible in Canada. Despite politicians promises to not privatize health care, there are various private clinics operating across the country for MRIs and other testing. I suppose it would be possible to pay for private health insurance to have a surgery in the United States, but I'm guessing you can't just sign up for it, go to the States for the surgery, and then cancel the insurance. The current problems in Canada are being used to push for more private health care for those who can afford it.

Do you have both Government & private hospitals there ?

I pay the $233 a month because I would rather get into surgery within weeks than wait on a government hospital waiting list .

I could just save my $233 a month and go to government hospitals 

[Riobard]

$233 is nothing. I would happily pay it, and more. There is no such insurance rate in Canada that stratifies public versus private care meaningfully. I pay for MRIs electively. As an experiment, my latest MRI plan was a referral to the public system by my GP. After a series of re-refers I am still waiting after 3 months to be scheduled for an appointment let alone how distant that appointment would be. The Quebec health system is rubbish and about the highest tax rate of provinces. STI screening infrastructure is superb, though. And I like my GP but what can he do? Most senior issues call for specialist care. I went to Florida for inguinal hernia repair non-mesh Desarda Method, completed 5 days after calling them, $8,000 all in, worth it. Shouldice Hospital in Ontario, private, had a 4-month wait that would have put me just past the timing at which they shut down early in COVID. 

[unicorn]

Just to bring in some science into the discussion, most of the prostate cancers detected by screening (as opposed to those which appear due to symptoms) will never affect the life of the person who has that cancer. Screening asymptomatic men for prostate cancer has NO effect on overall mortality. There is a minimal improvement in prostate cancer mortality, but this is balanced by increased deaths caused by unnecessary treatment. This is probably true because once diagnosed, few men choose the wisest course, which, in many cases, is watchful waiting. The immediate response usually comes as "Aaack! Get it out!", often spurned by financial interests of the urologist or radiation oncologist. 

https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/prostate-cancer-screening#bootstrap-panel--5

"Adequate evidence from randomized clinical trials (RCTs) shows that PSA-based screening programs in men aged 55 to 69 years may prevent approximately 1.3 deaths from prostate cancer over approximately 13 years per 1000 men screened.3, 4 Screening programs may also prevent approximately 3 cases of metastatic prostate cancer per 1000 men screened.3 Current results from screening trials show no reductions in all-cause mortality from screening. There is inadequate evidence to assess whether the benefits for African American men and men with a family history of prostate cancer aged 55 to 69 years are different than the benefits for the average-risk population."

[Riobard]

2 hours ago, unicorn said:

Just to bring in some science into the discussion, most of the prostate cancers detected by screening (as opposed to those which appear due to symptoms) will never affect the life of the person who has that cancer. Screening asymptomatic men for prostate cancer has NO effect on overall mortality. There is a minimal improvement in prostate cancer mortality, but this is balanced by increased deaths caused by unnecessary treatment. This is probably true because once diagnosed, few men choose the wisest course, which, in many cases, is watchful waiting. The immediate response usually comes as "Aaack! Get it out!", often spurned by financial interests of the urologist or radiation oncologist. 

https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/prostate-cancer-screening#bootstrap-panel--5

"Adequate evidence from randomized clinical trials (RCTs) shows that PSA-based screening programs in men aged 55 to 69 years may prevent approximately 1.3 deaths from prostate cancer over approximately 13 years per 1000 men screened.3, 4 Screening programs may also prevent approximately 3 cases of metastatic prostate cancer per 1000 men screened.3 Current results from screening trials show no reductions in all-cause mortality from screening. There is inadequate evidence to assess whether the benefits for African American men and men with a family history of prostate cancer aged 55 to 69 years are different than the benefits for the average-risk population."

Important data. Over a lot of heads though. My urologist continually pokes (tee-hee) for my attitude on ‘next steps’, to see if what he says is sufficiently sobering to shift me from ‘watch/wait’ to biopsy. My expensive 4K readout was 35% probability malignancy …. deceased men had those quantifications … many men without cancer had them (downplayed).  I don’t have prostate cancer; that is unequivocal. A few weeks a year of BPH discomfort. That metric alone (35%) would have most fellows signing up for prostatectomy; which of 3 cups is the walnut under, half a Russian roulette so to speak. However, I’ve done my homework and my background is partly medsci research so I cover all the angles. He also indicates a mere 10% false negative error cohort estimate on (my) clear MRIs and claims his practice has not contained one single -ve prostate/bladder MRI in which cancer subsequently manifested. I don’t envision biopsy on my event horizon. My father, a lifetime smoker, died of metastasized prostate cancer at 87, fairly healthy and well-functioning until his last few months. My older brother, lifetime smoker, has not had one single DRE or PSA. It’s a racket of sorts, but there will always be an element of truth to the legitimacy of surveillance and intervention. We all have to manage the fine line between absolutism and ambiguity. I may eat my words one day; for now I have robust response eating dick, knock on ‘woodies’. 

[Guest]

from the US based Mayo Clinic re: active surveillance for prostate cancer - lots of great expert information 

https://www.mayoclinic.org/tests-procedures/active-surveillance-for-prostate-cancer/about/pac-20384946

[unicorn]

1 hour ago, Slvkguy said:

from the US based Mayo Clinic re: active surveillance for prostate cancer - lots of great expert information 

https://www.mayoclinic.org/tests-procedures/active-surveillance-for-prostate-cancer/about/pac-20384946

It's interesting to read that article (which doesn't have references). Although it's not apparent to those who are unsophisticated in these matters, it quietly discourages active surveillance. For example, it states "Active surveillance may be best suited if you have a low Gleason score (usually 6 or lower), which indicates a less aggressive, slower growing form of cancer."

That statement implies that a Gleason score of under 6 is possible, which it is not. Urologists may dishonestly imply that the Gleason score is a range of 1 to 10. However, the lowest possible score is, in fact, 6, and a score of 7 is actually fairly favorable:

https://www.pcf.org/about-prostate-cancer/diagnosis-staging-prostate-cancer/gleason-score-isup-grade/

"...Theoretically, Gleason scores range from 2-10.  However, since Dr. Gleason’s original classification, pathologists almost never assign scores 2-5, and Gleason scores assigned will range from 6 to 10, with 6 being the lowest grade cancer...". While it is true that a score of 6 means the cancer is highly unlikely to metastasize, the Mayo Clinic article implies that a score of 7 is dangerous and not suitable for active surveillance. That's simply not true. 

[Guest]

2 hours ago, unicorn said:

Mayo Clinic article implies that a score of 7 is dangerous and not suitable for active surveillance. That's simply not true. 

implies means that’s what you’ve taken from it, not what it actually says.

I know people like to dispute sources here, so just google “best hospitals in United States” & see what consistently comes up.  You’ll find its almost always Mayo Clinic from all sources in almost every specialty.  Usually followed by Cedars Sinai/LA, NYU Langone & Cleveland Clinic among the other top 5.  And Mayo frequently is #1 in US for urology. 

I have some personal experience w prostate issues - a scare a few years ago & now i get a PSA test annually as a precaution by my choice…not a big deal as it’s done with routine bloodwork.   It’s a controversial topic all around and I know a couple guys w botched surgeries that were life changing & wish they’d never gone down that road.  

There is no right or wrong - it’s a personal decision. 

[unicorn]

4 hours ago, Slvkguy said:

implies means that’s what you’ve taken from it, not what it actually says.

I know people like to dispute sources here, so just google “best hospitals in United States” & see what consistently comes up.  You’ll find its almost always Mayo Clinic from all sources in almost every specialty.  Usually followed by Cedars Sinai/LA, NYU Langone & Cleveland Clinic among the other top 5.  And Mayo frequently is #1 in US for urology. 

I have some personal experience w prostate issues - a scare a few years ago & now i get a PSA test annually as a precaution by my choice…not a big deal as it’s done with routine bloodwork.   It’s a controversial topic all around and I know a couple guys w botched surgeries that were life changing & wish they’d never gone down that road.  

There is no right or wrong - it’s a personal decision. 

I can tell you 100%, that the strong implication of the article (which, again, has no scientific references) that active surveillance is almost never a good idea is absolute NOT what I got out of it, but that's because I have more information. However, any lay person reading that article would probably conclude (incorrectly) that active surveillance is usually a lousy alternative. For example, it states "If you have other health problems that limit your life expectancy, active surveillance for prostate cancer may also be a reasonable approach....". Well, any national guideline will tell you that if a man has health problems that limit his life expectancy, PSA screening is entirely inappropriate in the first place. The USPSTF gives it a "D" recommendation which means "Don't do it because there is strong evidence that it's harmful." 

Another obvious way that article is misleading (very obvious, in fact) is that it list "Risks" of active surveillance, but not the "Benefits"! Any competent physician should be able to explain the risks and benefits of alternative treatment options, and not just sway the patient with one-sided information. In fact, it's the law (at least in the US)--that's why it's called INFORMED consent, not just "consent." Mind-blowing to me, it actually lists as one of the "risks" of active surveillance as "Frequent medical appointments. If you choose active surveillance, you must be willing to meet with your health care provider every few months." As if other treatment options don't involve lots of other medical appointments?? WTF?? Warning patients about having to meet with his health care provider 3 times a year (and get a blood draw), but not mention the many risks of surgery or radiation?

Yes, obviously these decisions are personal. However, decisions with such major potential consequences should be made with all of the facts well laid-out, in a manner most patients can understand. In making such important decisions, patients deserve information given in a factual and unbiased manner, not in a clearly one-sided and leading article. The fact that the Mayo clinic is well-rated doesn't mean they can't put out articles which fail to accurately describe risks and benefits (clearly the case for this article). These articles don't factor into the ratings of hospitals/medical centers.  

[Riobard]

On 10/7/2022 at 2:41 AM, unicorn said:

Yes, obviously these decisions are personal. However, decisions with such major potential consequences should be made with all of the facts well laid-out, in a manner most patients can understand. In making such important decisions, patients deserve information given in a factual and unbiased manner

This detailed CE module from Creighton U down the road from Rochester MN is now sitting in my bucket read stack. These pieces are often consumable by the lay public. I find my Urologist to be very cryptic and rote, though I can understand that it would be a challenge for him to be assortative wrt the baseline knowledge of all within his patient constituency. How would he translate the breadth of info within 10-minute consults. He is now focused on the lucrative vaginal rejuvenation market. I consider it up to me to be informed. This default might be very unfair to the average patient. It is my playbook. In my case, it is easier to examine and attempt to interpret the science to date in personal decision-making than look under rocks for a better provider match. For example, I see there is now data on laser ablation. He does not do it and there is no public payer fee that he can draw on other than for traditional conventional procedures. He is actually top rated online and seems nice enough, but the slant seems to be intervention-focused. I just need someone to sign off on surveillance tasks. At 70, though with zero underlying morbidity, my primary goal is preservation of my prostate’s location as well as setting the bar high in terms of the threshold at which I would capitulate to biopsy. He has a vast rapt audience to go in that alternate direction based on simplistic binary-leaning considerations. 

https://www.ncbi.nlm.nih.gov/books/NBK470550/#article-27833.s1

[PeterRS]

Thank you all for this discussion. At BNH in Bangkok yesterday for another reason, I asked for a PSA test since I have not had one for 2 years. I'm still awaiting the result.

I notice that the hospital had a seminar last month "How to Manage an elevated PSA Level" which I missed. But it does have a a package available until December 31 that includes a complete Urological  Check-up for 6,990 baht reduced from 10,125 baht. It includes tests for kidneys, ureters, bladder and uretha, testosterone - men's essential hormones, PSA test as well as consultation with a urologist. The price is inclusive of the fees for the doctor and hospital services.

[xpaulo]

On 10/6/2022 at 12:36 PM, unicorn said:

few men choose the wisest course, which, in many cases, is watchful waiting

I have chosen the watchful waiting. My doctor and a specialist she consulted both agree that's the best course for now. I don't think I've been officially diagnosed, but the finger, urination problems and blood tests all suggest cancer. I heard an interview long before this became an issue for me with an expert who explained most men with the signs won't need cancer treatment and as you said, some die as a result of the treatment. Plus our system is under a lot of pressure and I have no wish to contribute to it. And I don't want to die, but I'm reconciled to it. The best part of my life is over, all of my immediate family have passed and I'm not a relationship person. So short of hopefully sucking more Brazilian dicks, which is not nothing, there's not much left to look forward to. I wish I could choose the time though.

[Mavica]

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I heard an interview long before this became an issue for me with an expert who explained most men with the signs won't need cancer treatment

Obviously, the decision(s) to wait, undergo radical prostatectomy or opt for another form of treatment is a personal one.  Few of us face the same circumstances / situations when making these decisions.  Age, health history, family medical history ... all play a factor.

I don't second guess that the decision I made to undergo a radical prostatectomy via the Da Vinci robotic procedure and that it was right for me.  

Quote

... and as you said, some die as a result of the treatment.

True.  And men who choose to wait die, too.  

Quote

Overall survival after radical prostatectomy is excellent. Men who undergo radical prostatectomy usually die of a nonprostate cancer cause. Almost half of patients who survive prostate cancer die of a secondary malignancy, likely due to the selection of surgical candidates at low cardiopulmonary risk.

Source:  

https://pubmed.ncbi.nlm.nih.gov/22819416/#:~:text=At a median followup of,% and 69.2%%2C respectively.

 

My older Brother /had/has prostate cancer.  His choice of treatment was watchful waiting, followed by radiation.  Not long ago, his physician advised him that his PC has spread outside of the prostate.  Because of other serious health issues he's dealing with, no further treatment has been prescribed.

[unicorn]

On 10/12/2022 at 7:30 PM, PeterRS said:

Thank you all for this discussion. At BNH in Bangkok yesterday for another reason, I asked for a PSA test since I have not had one for 2 years. I'm still awaiting the result.

I notice that the hospital had a seminar last month "How to Manage an elevated PSA Level" which I missed. But it does have a a package available until December 31 that includes a complete Urological  Check-up for 6,990 baht reduced from 10,125 baht. It includes tests for kidneys, ureters, bladder and uretha, testosterone - men's essential hormones, PSA test as well as consultation with a urologist. The price is inclusive of the fees for the doctor and hospital services.

I would strongly caution you, for your own sake, to be wary of any seminar or "check-up" offered by someone with a financial incentive to find trouble. Of the tests you mentioned, none is generally recommended by unbiased professional recommendation groups, especially the USPSTF, other than that there's a "C" recommendation for PSA screening in men from 55 to 69 ONLY. The "C" recommendation means there's little evidence for benefit, or benefits and risks are pretty balanced, but might be reasonable per patient preference after a thorough discussion of risks and benefits. Although it seems counter-intuitive that more information can lead to worse outcomes, this fact often appears to be the case in medicine.