After over 10 years with gay prostate cancer support groups, I have come to believe that radical prostatectomies (RP) cause special and needless suffering in gay men and should never be used in them. Two great resources for gay men faced with this decision are these:
The Effects of Radical Prostatectomy on Gay and Bisexual Men's Mental Health, Sexual Identity and Relationships: Qualitative Results from the Restore StudyThreat of Sexual Disqualification: The Consequences of Erectile Dysfunction and Other Sexual Changes for Gay and Bisexual Men With Prostate Cancer
Gay men suffer more from prostate cancer
"Just cut it out"
"Cancer panic" is a type of anxiety familiar to everyone who has had a cancer diagnosis. It is often followed by generalized depression and grieving over one's mortality. Anxiety and depression are the enemies of understanding. There is very little input that can occur. From the doctor's point of view, a great deal of information is imparted. But from the patient's point of view, all he may hear is "cancer blah blah blah."
For most of us, cancer seems to be an unvaryingly lethal disease. We all have loved ones who have died, sometimes painfully, from various types of cancer. The fact that prostate cancer is uniquely slow growing and we have biomarkers and diagnostic tests that often allow it to be cured is lost on many of us, if not intellectually, at least emotionally.
"Just cut it out" is a very natural first reaction. Often, well-meaning family and friends reinforce that initial reaction.
Results the same or better with radiation or active surveillance
The ProtecT clinical trial randomized men with localized prostate cancer to either active monitoring, radical prostatectomy (RP), or external beam radiation (EBRT). After 10 years there was no difference in oncological outcomes. While ProtecT didn't break down results by risk level (almost everyone was favorable risk), we now know that 55% of low-risk men are able to go without treatment for 20 years so far without grade progression (Klotz). Favorable intermediate-risk men have similar 10-year results with RP or SBRT. Unfavorable intermediate-risk men seem to have superior results with radiation (see this link), and high-risk men have much better results with brachy boost therapy than surgery (Kishan et al. 2018).
There were marked differences, however, in quality-of-life in ProtecT. There was higher risk of lasting incontinence and erectile dysfunction after prostatectomy.
Among men who were previously potent, only 35% maintained potency 2 years after nerve-sparing prostatectomy (Sanda et al, 2008). It was similar to EBRT in men who were 10 years older. Using better radiation techniques (like SBRT) has resulted in 2-year potency preservation of 79% (Chen et al.). Of course, active surveillance results in no incremental potency loss.
Younger men do better with any therapy - RP or RT. When we are younger, our tissues are more resilient. Some have used that as an excuse for younger men to avoid active surveillance. In fact, there is no age at which active surveillance is not preferable in terms of long-term side effects (see this link and Lee et al.).
It has been argued that the risk of a second primary malignancy due to radiation is a major risk factor in younger patients. This recent study found that the "Probability of Second Malignancy was similar between SBRT and radical prostatectomy." It is tremendously difficult to attribute second malignancies to radiation. Hensley et al. has shown that men who have had bladder cancer (removed by cystectomy) are more prone to prostate cancer. The best estimates of risk are less than 1% (see this link and this one). Arguably, younger men have more intact DNA repair mechanisms.
Young, unpartnered and gay men are particularly impacted by "marginalisation, isolation and stigma—relating to men's sense of being “out of sync”; the burden of emotional and embodied vulnerabilities and the assault on identity." (Matheson et al.) A recent Pew study reported that gays are much more likely to be single than straights, especially gays over 45 (AARP). Gay men of all ages do not have the social support system of their straight counterparts.
Aging without expected erectile function is especially a problem for gay men (Ussher et al.)
Even among men who are able to regain erections sufficient for vaginal penetration, they are seldom able to regain erections sufficient for anal penetration. At Memorial Sloan Kettering, arguably one of the best institutions at providing quality RP, "only 4% of men who were ≥ 60 years old with functional erections pre-surgery achieved back-to-baseline erectile function." (Nelson et al.) I would guess that drops to near zero for anal penetration.
As mentioned, erectile dysfunction is the single largest emotional and social problem for gay men, who are mostly single at the age when they are treated for prostate cancer. Gay men more than straight men face an identity crisis because their identities have been sexualized. With only 35% maintaining potency after RP, and even fewer left with erections sufficient for anal intercourse, they are effectively excluded from the dating market and face a lifetime of social isolation. Ussher et al. (2017) calls it "sexual disqualification"- exclusion from gay life.
The sudden loss of potency destroys many pre-existing relationships. Partners look for sexual satisfaction elsewhere, and often leave relationships as a result. Depression is a common result. There have been no studies of suicide following RP among gay men, an unmet need.
While orgasm is still achievable without an erection, many men do not find it worth the bother.
Loss of Ejaculate
While women can fake orgasms, men can't. We either ejaculate at orgasm, or we don't have an orgasm. Ejaculation is how men communicate that "it was good for me." Men are disappointed when their partners do not "cum." RP removes all ejaculate except for Cowper's gland secretions. RT reduces ejaculation, but in a recent trial of SBRT patients at Georgetown (pre-publication), only 15% were without ejaculate after 2 years. Anejaculation excludes men from relationships with other gay men. It is more bothersome to gay men (Wassersug et al.)
Ejaculation is how we've signaled orgasm to ourselves since puberty. Getting used to orgasms without ejaculation takes some psychological readjustment, whether gay or straight.
Perceived size loss
Another rarely discussed adverse effect of RP is size loss. Men are very conscious of size and compare themselves to others. Size is seen as a surrogate for masculinity, and many think that sufficient size is necessary for mutual pleasure. Size loss is difficult to measure objectively, but the perception of size loss can be patient-reported (but usually isn't). In a patient-reported study of 1411 men, 55% of men report size loss after RP (Carlsson et al.)That loss had a negative effect on their quality of life. Some patients complain that even sitting down to pee they are unable to point their micropenis into the toilet. Gay men with such size loss universally do not undress in front of others.
Shooting urine at orgasm (climacturia) is another non-regularly reported side effect of RP. Incidence was as high as 44% at 3 months post RP and 36% at 24 months post RP (Mitchell et al.). For many men, gay or straight, it is embarrassing and bothersome. Many give up sex because of it.
Because of damage to the pudendal nerve during RP, some men report penile pain (usually temporary) or loss of sensitivity (maybe permanent). Perhaps related is reported pain during orgasm(this seldom occurs). This is often not reported.
I've heard mixed reports about whether receptive anal sex (bottoming) is as pleasurable post-prostatectomy. Some feel that pushing against the prostate and pushing out cum is an important source of pleasure. Others feel that filling the rectum is all that's necessary. Ussher reports that many men who are in relationships who previously enjoyed "topping" switched to bottoming when they could no longer perform. Many were unhappy about switching roles. This has only been qualitatively researched.
There are two myths that are prevalent about radiation, and they affect decision-making among gays and straights equally. The first myth is that salvage after radiation is nearly impossible. While it is true that surgery after radiation is fraught with peril and should never be done, it is untrue that no salvage is possible. In fact, salvage after RT often has better results both oncologically and in terms of side effects compared to salvage RT after surgery (see this link). More to the point, with 10-year biochemical recurrence-free survival after RT over 95% for favorable risk, and over 80% for the highest risk patients, and with better PSMA PET patient selection, salvage should not be an overriding concern. It is a mistake to think that one can always have salvage. Side effects are always worse than if RT had been given originally.
The other myth is that with radiation, side effects crop up with time. One need only look at the patient-reported outcomes in the 6 years of the ProtecT trial to see it isn't true (see this link). With radiation, acute side effects are highest in the first 6 months and decrease afterward. That is not to say there are no late-term effects, but it is extremely rare for an entirely new side effect to occur later that has never occurred before. Erectile dysfunction naturally increases over time as men age. In a very elegant study, Keyes et al. showed that half of the long-term decline in erectile function among men getting brachytherapy was due to normal aging. ED does occur with radiation, but there is significantly less.
It is worth mentioning that those with advanced prostate cancer who must use ADT, often complain of their loss of masculinity. When RT is used for high-risk localized prostate cancer, adjuvant ADT is temporary. However, if proper preventive measures aren't taken (e.g., penis pump), there could be permanent size loss.
Lack of Research
The major instruments/questionnaires for evaluating quality-of-life after treatment, EPIC and SHIM, do not ask about most of the above adverse effects of treatments. Indeed, they do not ask men if they have sex with other men. What does not get measured, does not get acted upon. If there are any solutions to the above adverse effects of RP, they are not being studied intensively, if at all.
Most urologists have no idea if their patients are gay or straight. Sometimes they bring their male partner if they have one. But most often they are not out to their doctor because they are fearful that their doctor may have anti-gay attitudes and will somehow provide lesser treatment.
Slow it down!: For men diagnosed with localized prostate cancer, there is ample time to make a decision. Treatment delays have been studied (see this link), and treatment delays of 3 months, even in high-risk men, do not make a difference in outcomes. Your initial cancer panic will subside with time, and you will be able to make a more reasonable decision. Doctors should never accept a treatment decision within one month of diagnosis, and probably not even within 3 months, especially with the approval of PSMA PET scans for unfavorable risk patients. If your diagnosis is low-risk, join an active surveillance program. Even some favorable intermediate-risk men with small amounts of pattern 4 can buy time on active surveillance.
Tell your doctor that you're gay. Very few are bigots in major cities. If you live in Buttfuck, KY you should not have a prostatectomy there anyway. Remember that your doctor is of limited use in helping you grapple with the emotions necessary or even provide much of the information necessary to make this decision, and won't be there to pick up the pieces afterwards. A recent NY Times article described a novel program at Nothwestern University in Chicago to help gay men after prostate cancer treatment.
Join a support group. One can read all about this stuff, but things like loss of ejaculate and size loss won't be real to you unless you experience them. The next best thing is talking to a live person who has experienced them. (This is called the "availability heuristic," by the way.) It is one thing to understand intellectually, but quite another to feel it. Seeing a grown man cry about his micropenis has more impact than reading that penile shortening occurs.
Go into psychotherapy/ learn mindfulness: We all have baggage about cancer. Learn what kind of baggage you are carrying and whether you are hampered by it. If you can, take a class in mindfulness. With practice, it will help you stay in the present moment instead of ruminating endlessly about low probability future outcomes.
Talk to a Radiation Oncologist: We all started with a urologist. Sometimes, he did your biopsy. Many are trained as surgeons. Some surgeons are "hot dogs" who believe they can cure the common cold. They usually recommend surgery, because it's what they do. (If they don't believe in surgery, they wouldn't be a surgeon.) Get out and find a radiation oncologist before you make a treatment decision.
Don't ask the doctor what he would do if you were his father! This is probably the question patients most often ask, but shouldn't. You are asking one specialist to also be a specialist in another therapy. A doctor well-trained in shared decision-making will deflect your question: "what more can I tell you, so that you feel able to make this decision for yourself?" Even if the doctor is gay, he is not you - he has his own set of concerns and biases.
*OK, there are exceptions, but very few.
(1) There are very few men who are super-sensitive to radiation cannot have it.
(2) Some men have BPH to such a degree that radiation will inflame the prostate and cause the urethra to close up. Most such men can have a TURP procedure before radiation. TURPs usually cause reverse ejaculation (semen goes up into the bladder). But it is also necessary to wait several months before radiation begins; otherwise, there is risk of incontinence.
(3) Men with a history of intractable relapsing prostatitis.
There may be other reasons - I encourage patients to tell me about any.
For suggested questions to ask on interviews, see the following links:
- Questions to ask (and not ask) on a first urologist visit after a biopsy
- Questions to ask on a first visit for primary radiation therapy (IGRT/IMRT)
- Questions to ask an SBRT specialist
- Questions to ask a low dose rate (seeds) brachytherapist
- Questions to ask a high dose rate (temporary implant) brachytherapist
- Questions for an adjuvant or salvage radiation doctor
- Questions to ask yourself
- I didn't add focal ablation because we now have definitive proof that it doesn't work (see this link)