Gay men should NEVER have a prostatec... - Prostate Cancer A...

Prostate Cancer And Gay Men

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Gay men should NEVER have a prostatectomy

Tall_Allen profile image

Here's why:

prostatecancer.news/2021/12...

Disclaimer: although I borrowed heavily from Darryl's RESTORE study, this is a conclusion that I personally have reached. Neither Darryl nor Malecare helped me write this and do not necessarily support my conclusions.

That said, I think all gay men considering prostate cancer treatment should read these studies:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

35 Replies

I definitely disagree with this article. As a cancer survivor, and a gay man, who was 54 yrs old, was presented with the facts, the research and saw that a prostatectomy was the best choice for my long term health. The technology is such today that many doctors can an will try to save the nerves that control your erection, and bladder control. But leaving the prostate and continued radiation for younger patients can put you at risk when you are older for other cancers as a result of the radiation. Make sure you know your options. It’s not all about the sex, it is your life.

Tall_Allen profile image
Tall_Allen in reply to Mikeydc65

I'm sorry you were so misinformed. I'm guessing you didn't actually read the article where most of our concerns were addressed:

"a prostatectomy was the best choice for my long term health. " There is no risk level where long-term outcomes are better for RP than RT. This was proved definitively by the ProtecT trial (link in article) for favorable risk patients. RT has consistently been proven better for unfavorable risk patients, as discussed in the article.

"many doctors can an will try to save the nerves that control your erection, and bladder control." Nerve sparing RP leaves previously potent men without erections 65% of the time. They are left with lasting incontinence 20% of the time.

"continued radiation for younger patients can put you at risk when you are older for other cancers as a result of the radiation" I didn't address this point. A recent study found that the probability of a second malignancy was similar between SBRT and radical prostatectomy:

thegreenjournal.com/article...

Second primary malignancies are difficult to attribute to specific treatments. For example, it is well known that men who have had bladder cancer (w/o radiation) are more prone to prostate cancer. Still, the rate of second primary malignancies is estimated to be low (less than 1%) after any kind of prostate RT. Rare RP adverse events like Peyronies or fistulas carry a higher risk.

BTW - Thanks for your question! I added a paragraph addressing that to the article.

cesces profile image
cesces in reply to Tall_Allen

"A recent study found that the probability of a second malignancy was similar between SBRT and radical prostatectomy"

Is there any data that you are aware of comparing IMRT and radical prostatectomy?

cesces profile image
cesces in reply to cesces

I just read the conclusion of the article: "Conventionally fractionated intensity-modulated radiotherapy, moderately hypofractionated intensity-modulated radiotherapy, and brachytherapy but not stereotactic body radiotherapy were associated with increased probability of a second malignancy compared to radical prostatectomy. Patients treated with SBRT may be at lower risk of second malignancy due to improved conformality, radiobiological differences or patient selection."

So it would seem a reasonable conclusion, is that between all these options, SBRT is probably the best course of treatment of all these competing courses of treatment... generally, regardless of sexual orientation.

Are there any good reasons why currently, if choosing among these particular treatments, almost all patients would be best off with SBRT, and almost all would be least well served by a prostatectomy?

Tall_Allen profile image
Tall_Allen in reply to cesces

If you are not gay you do not belong on this site.

I appreciate that you you are a patient advocate but this is one study.Pleas let folks have honest conversations with their doctors and go from there. The Mayo clinic and Northwestern in the Midwest here in the US has some good research and options. One size does not fit all.

Tall_Allen profile image
Tall_Allen in reply to Mikeydc65

Obviously, you commented without reading. There are about a dozen studies quoted there if you bothered to look. I am searching for reasons that I have not covered why a gay man might be better off with an RP. After reading, I would be interested in your thoughts.

Mikeydc65 profile image
Mikeydc65 in reply to Tall_Allen

No, each study were for a different issue. You are trying to prove a point of gay sexuality- we are not all about sex. Some of us do have a balanced life.

Tall_Allen profile image
Tall_Allen in reply to Mikeydc65

Sex is an important part of life, gay or straight. But you are right that some men choose monastic life (it isn't "balanced" if sex isn't part of it, right?) But I can see why RP would be of equal merit for you if you have chosen to do away with sex in your life. Thanks for responding.

Nerka profile image
Nerka in reply to Mikeydc65

In defense of Allen, it is not all about sex. RP is associated strongly with incontinence issues. RT has virtually none.

That is my point, one size does not fit all. I had a full prostatectomy and have a very good sex life with my husband, since the surgery, no ED issues, and my Urologist was very upfront as to what the pros/cons were before my surgery. He suggested physical therapy, which helped to strengthen the pelvic floor and heal those nerves and muscles. To advocate based on cherry picked studies, in my opinion, is not professional. You can hurl your insults about sexuality if you like, I am ok with who I am. Are you, as a patient advocate, if you have to insult people?

Tall_Allen profile image
Tall_Allen in reply to Mikeydc65

I did not cherry pick any studies. This is the state of the art. What studies am I missing? What was insulting to you?

Mikeydc65 profile image
Mikeydc65 in reply to Tall_Allen

You assumed I had not read your article, and studies, I had. Secondly, you assumed, I am not having or could not have sex, wrong. The gay community is so fixated on sexuality that if their sexuality is threatened then all hell breaks loose. I like sex, but it is not my reason for living. My point, is that, living is more important. Have a conversation with your Urologist. Get a second opinion. I was lucky, I have a great support system, husband, family, and everyone encouraged us to do our research and not rely articles likes yours or the NYT. If I had, I would be in worse shape, and possibly dead. This list serve has been recommended to the Chicago physician community but will now be recommended with caution

Tall_Allen profile image
Tall_Allen in reply to Mikeydc65

I indeed misinterpreted your comment about how sex wasn't as important to you to mean you weren't having sex, and I apologize for that. I also wish that for most gay men of boomer age now, the ones that gets PCa, that sexuality weren't wrapped up in identity and community. It is like telling a black man that his only difference is skin color, or that the only meaning of being a Jew is the bible he worships from. I look forward to a future when "Gay Pride" parades are canceled for lack of interest. But that is how our culture is, whether it should be that way or not.

Your predictions of how you "would be" if you took another course is unknowable. Let's face it- you were very lucky. With only 35% of RP patients retaining potency after nerve-sparing surgery, you dodged a bullet. I also was very lucky, but with about 70% retaining full potency after SBRT my odds were twice as good as yours. I also still have erections firm enough for anal intercourse. Treated 11 years ago, I am fully cured.

I had the prostate taken out 2010. It has been disastrous ever since. I had not had sex in over 9 1/2 years. Dating was atrocious. Every time it was found out that I couldn't get an erection, I was dropped like a hot potato. Socially it caused extreme isolation. I could go out and do things socially, but what is the point. As soon as they find out I cannot get an erection , the phone calls stop coming. I never had that problem prior to the operation

That dating for you is atrocious and that you are in extreme isolation has not so much to do with the effects of your prostatectomy. It appears more to be related to your personality!

Before you past judgement, you should know all the details of someone situation. In addition, I am a relationship oriented man , and do not do the gratuitous sex routine that is so common in the gay community. I know what I am looking for. I had two long term relationships totally 26 years, Monogamous. I would rather wait for the man of the qualities I seek. I met him over a year ago. He is a doctor, with values that equate mine. We will celebrate our year anniversary soon. I want quality, not quantity. I do wish you happiness in where ever you find it.

Is the unstated assumption that, compared to the alternative treatments, that a radical prostatectomy is more likely to cause nerve damage and/or incontinence?

And that it is these two side effects that are causing the psychological damage?

Tall_Allen profile image
Tall_Allen in reply to cesces

No.

This recently published NYT article would seem to support TA's advice to gay men about prostatectomy. However, as a single gay man who chose not to have a prostatectomy, I can also attest to the disastrous effects of ADT and radiation on my sexual functioning, overall self-confidence and ability to navigate intimacy with other gay men.

In Chicago, a New Approach to Gay and Bisexual Men With Prostate Cancer.

A new clinic focuses on patients left grappling with the aftermath of treatment in ways that are rarely appreciated by doctors.

nytimes.com/2021/12/07/heal...

Allen, thanks for taking a brave stand based on following the data, even though you had to know speaking out would cause some discomfort.

I've believed similarly for a long time just from cursory knowledge (and experiences of people I know) before I had PCa. But after being diagnosed and reading everything I could, and speaking to/connecting online with many men, gay and straight, I could not agree more with your conclusion.

Honestly, I don't see the benefit for any man of any sexual orientation to choose RP while weighing QOL, but the argument for gay men for sure is quite compelling. A lot of people won't like hearing it. Whatever one chooses as a treatment will have downsides, but for QOL there are more issues with PT than RT while oncological outcomes are equal.

Thanks as well for offering advice to gay men in making decisions. It will help a lot of people.

This is mild compared to the pushback that article is getting from urologists. Their objections, so far, fall into 3 categories:

1. I am fully capable of informing my patients of the risks

2. I would never deprive my patients of a superior treatment

3. It is only sexual satisfaction, not his life

I don't think any gay man (of boomer age) sitting across from a man in a white coat who is talking at them (and telling them that only he can save his life), can understand what it would feel like in terms of disruption of identity and disqualification from one's community. Urologists believe that telling patients is enough - it isn't.

I have also yet to hear any reasons, aside from the three I mentioned, why any gay man would not be better off with RT or AS.

I'm 60, diagnosed and treated with radiation and surgery a little over a year ago, and single for about 3 years. I believe I was not given objective information about the risks of my surgery; things were spun to make them sound better than I believe they are--and certainly better than the impotence and incontinence stats cited above. I'm feeling pretty hopeless about my future, sexually and, therefore, socially.

Pedronw6 profile image
Pedronw6 in reply to NYCUWS

I emphasise as I feel the same although I had hornone and radiotherapy only

TucsonCowboy profile image
TucsonCowboy in reply to NYCUWS

To quote you: "....things were spun to make them sound better than I believe they are...". Exactly!

NYCUWS profile image
NYCUWS in reply to TucsonCowboy

I work in marketing, so I'm very aware of "spin" that folks can give to make info look better. I feel like I was on the receiving end of that. No time for regrets now, but all my decision-making was so rushed that I realize how bad the system is. I said once on a Zoom with several doctors "pitching" their specialties, "So is this the moment when the person in the room who knows the least about this is going to decide what we're going to do?"

I read the articles very carefully. As I have written on this very site many times, I have had issues with the side effects of the surgery (June 2013). That being said, I have stated the conditions of my prostate cancer and everyone has seemed to say that surgery was the way to go. I am cancer free and I glad I can enjoy life. Guess I am alittle confused. I did what was suggested by many to be cancer free but the side effects are not what I expected.

I wrote that in the hope that it would influence other gay men to go into this with their eyes open and mostly in the hope of influencing urologists to consider what they may be putting gay men through. Too often, a urologist is the only therapist that men with PCa see before making a treatment decision. Too often gay men do not discuss with their doctors, psychotherapists, or support groups what the treatment could mean for their identity and social standing. It is too often a rushed decision. It takes time to get past the initial "cancer panic," to get to the point where it can be rationally considered. Even more importantly, we have to try to imagine what it would feel like. The only way I know of to do that is vicariously in a support group.

In my support group in eleven years, there has never been one gay man who got an RP who had explored other alternatives. There has also never been one pre-treatment man who, hearing the distress of the men who had RP (granted, some came out of it OK), who didn't decide to have SBRT instead.

I am so in agreement with your comments in your reply. This is exactly what occurred with one. I did get second (and third) opinions as to if treatment was necessary, which all said was needed. At no point was anything presented as to as you say "distress of men who had RP". I did ask questions as to side affects of RP and in my opinion it was extremely downplayed. I was simply told kegels and/or exercise will solve any urinary issues. If there are any problems concerning ED, there are medicines to take. The first "warning" I really got was after surgery when I read Dr. Richard Albin's book (which many question). If I had any support group, I would have clearly used it. I selected RP since I felt it was the simplest easy quick solution. For example, radiation was to be atleast 36 to mid 40's in treatment. Surgery seemed to be the best in that it was a one time event. This only person who said I should not have treatment was a friend of a friend who is a retired urologist. He approached it from the point of view of "watchful surveillance"(one does not die of prostate cancer but with it). I honestly felt treatment was valid and I had gotten alot of information. Sadly, I did not have an input from others (including Gay men) as to the other side of this issue.

Nerka profile image
Nerka in reply to Tall_Allen

From my experience, I tend to think Tall Alleen is right. I do not have Allen's experience with PCa. But I have had Crohn's Disease since I was 4 years old, and I read medical article regularly. Because of an article I read which pointed out a four fold increase in the PCa for people with Crohn's Disease, I had my GP run a PSA test which found the cancer. Reading can save your life. I think that most studies do point out the advantages of RT over surgery, but I am not a Urologist, I just play one on the internet. :) Keep in mind, Urologist have a conflict of interest. They recommend surgery, and then get money when they do the surgery. Not that this is the case, but there it is.

Personally, I could not have RP because I had previous surgery in my abdomen for the Crohn's Disease. The only way they would have been able to do surgery would have been to do it "manually" since the scare tissue would have been a problem with the DaVinci Machine. Few doctors do open surgery right now, so the urologist pointed me to RT. I was lucky in that I found a Gay radiation oncologist who was awesome. Perhaps more importantly, they used SBRT and a newly purchased "MRL" or Miridian machine (which uses MRI continously to desperse radiation.) This decreases it to the OAR (organs at risk), while increasing it to the actual prostate. Of course there is also Proton therapy, which doesn't have a track record yet, but has great promise. The point is that technology in radiation is changing for the better in leaps and bounds, and studies only look at the previous 5-20 years typically. I also had SpaceOAR which for me with Crohn's was important. It basically reduced the radiation to the rectum to what the RO thought was insignificant. There is has been no change in my erections and I even have some ejaculate left. My urinary problems are the same as before.

Thought Point: Look at how both surgery and radiation affect the nerves and tissues around the prostate. With RT there can be radiation damage. This can effect the penile bulb, but it is nerve sparing. In surgery, they have to peel off the nerve from the prostate, which can do damage. If they find a tumor that is near the nerves, they will have to cut the nerve out as well. This means you will NOT have full erections in the future. If they have to remove BOTH nerves, well, you can guess. Under these circumstances I imagine, , radiation could make more sense. Another point I made in a comment up above was that RP has effects incontinence adversly in 20% of the cases (Allen can correct me if I am quoting this wrong). I beleive the changes with RT are insignificant.

Any time you have ADT, you cannot attribute any issues to either RT or RP. ADT is brutal in and of itself. With that all being said, dealing with radiation is not necessarily rational. There are some people who simply do not want to have radiation of that caliber in their bodies. No problem. IMHO Just accept reasponsibilty for your decision and chose your Urologist carefully.

Tall_Allen profile image
Tall_Allen in reply to Nerka

Good post! I know that some men with IBD/Crohns are afraid of radiation, but clinical trials show it should not be an exclusion for radiation.

I fully understand your points about prostatectomy and being a gay man. I chose having a prostatectomy the moment I was told that my PSA count had risen and that I truly had cancer. In hindsight, I partially wish I had stepped back and researched all the consequences of have the prostate removed for cancer treatment, especially any information that I possibly could have found on the affect on gay men. Yet, my father discovered he had prostate cancer when he was 56, which his diagnosis was Stage 4 at that time. He was one of the first men to have radioactive seeds inserted into the prostate in ordered to "kill" the cancer, which unbeknownst to me he was told the cancer could return in ten years. nearly ten years to the day of his surgery, the cancer returned and he died of Prostate cancer at the age of 71. Also, it was thought that my father's father who died at 71 in 1952, probably had Prostate Cancer, as well. In addition, my father had a brother die of the same caner at the age of 65 just before he himself was diagnosed with cancer. His other two brothers had bladder and kidney cancer respectively in their 80"s. Thus, after having both prostate exams and PSA test for years, the moment I was told I had cancer, I chose removal immediately, because I didn't want a "ticking time bomb" within my body.

I had heard many years earlier that my father chose not to have a prostatectomy in order to avoid ED, but that after the seed implants he had ED anyway. I had my prostatectomy and felt that things would be different in my case through time, yet I am still experiencing major issues nearly two years after my surgery. I had not experienced an full erection since the night before my surgery. My Penis doesn't even seem to have semi-erections that I used to have daily. at time my Penis even appears smaller, which is a very emotional tug on a gay man.

As a gay man, I will be honest and say that I am a bottom and most always have only bottomed during anal sex. I have been in a relationship for 29 years with the same partner and we have been married for 4 1/2 years. Unfortunately, my husband developed diabetes nearly 13 years ago, and his ED has gotten worse over the years. I have had to use toys or masturbation to satisfy myself most of the time, yet he did love to give me oral sex through the years, as well. I have tried to get him to see a urologist, but even if he went now, it may be too late.

As for me personally, I truly miss being a bottom. Yet, I also feel a loss of libido that hurts me emotionally. I still get excited when viewing any form of porn, but the lack of a full erection only depresses me more. I feel the loss of my manhood due to not having the Penis that I once had and would take anything that would help both my libido and erections return. As for anal sex or anal play, I have technically avoided trying for fear of no true pleasure due to the removal of my prostate. I am considering purchasing a new "toy" that vibrates an thrusts to see if that can work for me. Yet, I still want my old Penis to return, as well.

I have tried "Penal Therapy" through my urologist, which has involved using Cialis daily and an injectable medicine to produce an erection. Yet, I stopped both due to the fact I was not getting the results that I desire. I die not do very many injections over the past year, and I noticed that I really wasn't getting a hard erection all the time, which even the erection wouldn't last long. I also stopped the injections, because I may have a slight case of Peyronie's disease. I have seemed to get a partial erection on my own, but it never gets fully rigid or never seems to last long. I have woken up to harder erections, so the entire issue may be in my mind and the lack of libido, as well.

I have an appointment with my urologist next week and will discuss all of my problems with him at that time. I informed him that I was a gay man last year, but did not go into detail, because I didn't expect him to have a full understanding of any issues that may occur with a gay man. Yet, if I overcome my fear of opening up again as I did when I told him that I was gay, I will discuss my issues more during this visit.

I intend to reach out to gay men that I first chatted with after my surgery to see how they are doing now, in order to get suggestions on what to try. I also, intend to try to convince my husband to seek medical advice if it's not too late, to do so.

Sorry for the long reply, but I just wanted to share my story.

Joe kuhlke

This disregards the effects of ADT which is almost always recommended for Prostate Cancer treatment in conjunction with RTX. ADT, as commented on frequently, usually totally knocks out libido and is usually recommended to continue at least 2 years! ADT can also lead to muscle mass loss, fatigue, hot flashes, etc. This will certainly interfere with sexual relationships significantly! And then, there are the chances of lasting radiation proctitis and bladder irritability. The former can lead to chronic diarrhea and would certainly interfere with receptive anal sex.

Tall_Allen profile image
Tall_Allen in reply to Thomkin

ADT is seldom given with RT - only given with unfavorable risk PC. When it is given, it is limited term and the side effects soon vanish. Serious late-term RT side effects are low, and are much better than RP (see links to ProtecT trial in article).

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