Introduction to Me

[Ali-P]

Hi I am a 55 yr old gay guy, I was diagnosed with Prostrate cancer in 2018. I was told it would be very slow growing and should just forget about it. However in August 2021 I knew things were not right as I had Pain. I pushed for biopsies and was told I was Gleason 7, cancer in both lobs, right lob at the apex. It was suggested the best option for me was a radical prostatectomy. I had positive margins.

[Tall_Allen]

Did the doctor know you were gay?

[Ali-P in reply to Tall_Allen]

Hi Allen, from I was diagnosed, I was never asked where my sexual preferences lay. It was all matter of fact in the medical procedures needed, side affect post opp, full stop. They just assume you are straight.

[Tall_Allen in reply to Ali-P]

That's why I always tell patients to tell their doctors. I think it makes a difference.

[Ali-P in reply to Tall_Allen]

To be honest I was to embarrassed.

[JoelCairo in reply to Tall_Allen]

Tall Allen, can you elaborate on why you think it makes a difference why your urologist should know your sexual preferences if one is gay?

[MNDodgerFan in reply to JoelCairo]

Oh, Lord…where does one being… the simple fact is that gay men value sex greater than and very differently than straight men, even at older ages when prostate cancer appears. A prostatectomy for a gay man is more like an amputation of their sex life, where as most straight men, particularly the married ones, find it more of a convenience. When straight men are finally able to have sex with their wives post prostatectomy (they are able to have erections post surgery), they no longer have to worry about the “mess” that comes out of their penises when they cum, which their wives love not having anymore. Cum for a gay man is treasured like winning a prize…when a gay man cums, or his partner cums, it’s the reward for doing something right. It’s the signal to both men that something wonderful has happened, and they get joy from that. Not being able to cum (ejaculate) definitely changes how other gay men look at you, particularly any considering having sex with you. And then there’s penis size, something all gay men value…a prostatectomy shortens a man’s flaccid penis. In my case, mine is about 1.5” shorter, and I notice it very much. It’s the difference between having a flaccid penis that hangs nicely with my balls vs having a nub when it’s flaccid. Sure, my penis is full size when it’s erect, but I attend sex parties where everyone is naked, and yes, even flaccid penis size is part of the attraction factor. Having a smaller flaccid penis (or just a nub) definitely makes a difference in such an environment or other gay sexual environments. And then there’s the ED that lasts for up to a year if you're lucky, or more for many. Not being able to get hard for many gay men is like a sex death sentence. For many married straight men, it doesn’t define their lives or self value nearly as much. As for the incontinence, can you imagine being a bottom and having piss literally being pushed out of your penis with each thrust during sex from your top partner…or having your partner give your penis oral attention and you worrying about if piss is going to come out and go into his mouth? The point is, your doctor needs to know the patient is gay so that he can help the gay patient realize how a prostatectomy, or radiation treatment, or ADT, is going to affect their sex lives on all levels, and so that the urologist can maybe recommend a different preferred treatment for a gay man than he would recommend for a straight man. Most urologists are straight and simply don’t have a clue how gay men value sex, or how prostate cancer can drastically affect a gay man’s sex life and sexual identity. Gay men’s sexual concerns are vastly different than for straight men.

[JoelCairo in reply to MNDodgerFan]

I really appreciate your candor, MNDodgerFan. This is exactly what I needed to hear, though I'm not sure I even realized it until I read your reply to my original question. What you describe about gay men's attitudes toward sex and their penis is very much aligned with how I feel about these subjects. I'm dissatified with the size of my penis post-surgery, and I really miss ejaculating during sex. I also worry about urine incontinence during sex. There's a possibility my cancer has returned, and I am scheduled to meet with a radiation oncologist in a couple of weeks, probably to talk about radiation and ADT treatments. You suggest there are alternative treatments that might be preferable for gay men. Can you tell me what they are? I haven't seen anything else in my research.

[MNDodgerFan in reply to JoelCairo]

JoelCairo - Your views about gay sex are aligned pretty much with every gay man about gay sex!

There’s a gay urologist in Canada that recognizes how the urology medical community has no recognition that gay men have differing values and needs than straight men and he’s trying to establish standards that he hopes someday will be used by all urologists, starting with urologists actually asking about a patient’s sexuality. But it will prob take years for any such recognition and changes to occur in the medical community. Many straight urologists are still not comfortable dealing with gay patients…they may treat them, but they are not going to deal with the gay specific care needed.

With regards to the alternative treatments, perhaps I misspoke. I was referring to alternative treatments to the prostatectomy, such as the radiation treatment or ADT. I didn’t mean there were alternatives to radiation of ADT. I think if I had truly understood how much a prostatectomy was going to affect me as a gay man that I would have leaned more towards getting radiation treatment first.

You mention the possibility of radiation or ADT in your future. After speaking with several men that have had one or both of those treatments post surgery, I believe that if I were given the choice I’d take the radiation. While ADT may be easier to do than radiation, the way it affects men is so drastic that I don’t think I would want that. It’s basically a chemical castration, which affects your body and psyche in pretty strong ways. And, most guys report that after stopping the therapy that their bodies never fully recover, that their sex drives don’t come back to full strength. They report the longer they are on ADT the longer it takes to recover from it. I’m lucky: my PSA post surgery came back undetectable, so there’s no treatment in my foreseeable future, but when that day does come, I’m going to lean toward radiation therapy if I can. I really don’t want my body, psyche, or sex drive to change that drastically under ADT.

[JoelCairo in reply to MNDodgerFan]

Very helpful advice. Thanks!

[thethinman in reply to MNDodgerFan]

If the time comes when you need radiation, be prepared for your doctor to push ADT as part of your overall treatment. It's almost standard procedure these days, as the belief is that reducing testosterone weakens the cancer and makes it more susceptible to the radiation. Most guys I know have had at least a 4 to 6 month regimen of ADT. Best case scenario it's usually started a month or two before radiation begins, and continues for a similar period after radiation is completed.

[Ali-P in reply to thethinman]

Given that I was was at stage pT2c with positive margins, do you think I may need treatment in the future?

[thethinman in reply to Ali-P]

Other than to say it would be better if you didn't have positive margins, I wouldn't want to speculate about what the future holds. What did your doctor tell you following surgery?

[Ali-P in reply to thethinman]

He just said we will worry about the future in the future, has put me on PSA monitoring. The problem I have is that my PSA pre my operation was none reflective of my cancer state. They were always going on my PSA @ 4.8 Gleason 6 for the duration. I knew my condition had worsened over time, so I had to force them to do biopsies. Resulting as mentioned, Gleason 7. I have to say my contact with my medical providers has been very mixed and have been pushed round five doctors. You may know the condition within the UK NHS its is in crisis. I have lost faith with my medical providers.

Many Thanks.

[Ali-P in reply to Ali-P]

I also should mention, I am left post opp with bladder pain when it fills and also penis pain. Not sure if this is normal?

[thethinman in reply to Ali-P]

I know trying to compare things in the UK and US is tricky. Regarding the issues with your bladder and penis, how long has it been since your surgery? It's not something I've heard others mention as being a problem post-op so I would try to follow-up with someone. Do you have pain or burning while urinating? That could possibly be a urinary tract infection.

[Ali-P in reply to thethinman]

My surgery was on the 5th of October 2022, it has been like this from they removed the catheter.

[thethinman in reply to Ali-P]

Have you had a chance to discuss this with a doctor? It doesn't sound like something you should be experiencing for two months following surgery.

[Ali-P in reply to thethinman]

Happy New Year. Yes I have, he just shrugged his shoulders and said he didnt know what it could be. He said, I am sure you dont want be to be sticking a tube up there and left it at that.

[thethinman in reply to Ali-P]

Happy New Year to you as well. I'm thinking he was probably referring to a cystoscopy where they insert a tube in the penis and go thru the urethra to examine the bladder. I'm sorry you don't have more sensitive doctors. Hopefully this wlll resolve itself over time. I hope it's ok to do this here but I'd invite you to join the gay men's PC support group on Facebook. I know there are guys there who have had this test. Here's a link

facebook.com/groups/prostat...

[Ali-P in reply to thethinman]

I have joined the FB group.

[thethinman in reply to Ali-P]

I'm glad to hear that. Once you're comfortable I would recommend you describe what you're dealing with. I'm almost positive there will be guys who are familiar with your situation. Hopefully they can provide you with some useful suggestions.

[Ali-P in reply to thethinman]

Xx

[cpl901 in reply to MNDodgerFan]

Hello Dodger,

How did you help yourself after surgery ? Do you have a partner ? A difference if you are alone and living only with isolating masturbation or in company.

[Ali-P in reply to cpl901]

Hi, I got my badder incontinence under control about five weeks post opp, that was important to me. I have a husband who is great and has been through this whole process. I use my pump daily to ensure blood is pulled into the penis. Unfortunately I am three months post opp and have not had an erection in that time. 😰🤔

[cpl901 in reply to Ali-P]

You where diagnosed in 2018 and went under surgery in 2022 ?

Waht was your Gleason score ?

Good or bad to have someone to stay next to you. The reeducation can go until 1 year or 2. But 3 month is still ok. Did the surgeon tell you something about our operation ? What happend during the operation, how he could operate you ?

[Ali-P in reply to cpl901]

I think that depends on your age, due to my age 55 as I was Gleason 7 pre opp. My surgeon suggested the surgery rather that radiation, as he felt I needed the ability to have further treatment in the future that after radiation therapy could not be offered to me. My surgeon did say that radiation treatment will through time have the same negative outcomes as radical prostatectomy will leave you with.

Alway happy to try and answer any questions you have now or in the future. If you need the treatment just go with what feels right for you.

[EdinBmore]

And, don't mean to be argumentative but, methinks, gay is who one is; it's not a preference. And, YES, tell your docs that you're gay.

That being said, TA has several articles about surgery vs radiation for gay men. Worth a read no matter where you are in treatment status.

You'll read about varying experiences with ADT. Mine was awful. Hopefully, you'll be luckier than I was. Anyhoo, I suggest you read "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones." An easy read and provides a guide (what may happen on ADT and its side effects) and suggestions for how to deal with ADT.

EdinBaltimore

[JoelCairo in reply to EdinBmore]

Great. Thank you!

[Ali-P in reply to EdinBmore]

I have to say I really do not want to have ADT if it comes to it. I have heard bad stories from guys that have had it. Sex drive is a very important part of life, who wants to be with out it. Unfortunately I did nit have much choice other than to have the operation.

[NYC_talker]

Yes, very important they know you are gay but also that a gay doctor is in the mix here. Because even if the the docs know you're gay but don't understand priorities -- because they're heterosexual -- they may resist seeing the differences, and try to treat you "equal" to a straight man, thinking they are doing the right thing. Wrong.

[Ali-P in reply to NYC_talker]

Thank you for you reply, unfortunately my doctors in the UK within my treatment are straight. I am unsure what way my treatment needs to be different. Maybe you can help with this, as I will need to explain this to them?

Many thanks.

[NYC_talker in reply to Ali-P]

I think you received a lot of great feedback on this thread. Your priorities as a gay man need to be understood even if it wouldn't necessarily change treatment. But in some cases it might change treatment approach. For example, Tall_Allen wrote a great piece on gay men and radical prostatectomy that is a must-read. Good luck!

prostatecancer.news/2021/12...

[Ali-P in reply to NYC_talker]

Perfect, thanks for that I will have a read of that.

[cpl901 in reply to Ali-P]

Hello Ali

Your story is very interesting i m facing also to a diagnosis and no urologist will understand what s a gay life !!!

[Ali-P in reply to cpl901]

Hi Cpl, yes I can understand your concerns. In my experience the doctors are only interested in the cancer and not our sexual preference's or sex life post opp. Nothing post opp is spontaneous anymore which can be hard to deal with under normal circumstance’s let alone having to deal with as a gay guy. There is no literature at all currently in the UK for LGBTQ+ to help us through this process at a medical level. I am not sure what is like in Switzerland?

[cpl901 in reply to Ali-P]

Even if i m living in a "openminded" city (the biggest city in the country) there is nothing to help me. After diagnosis i shortly spoke to the urologist, but there was no reaction about. Thru friends i could speek to 2 gay guys having the same , but older. I m not sure but i often observed in my discovery of gay life that the older guy havent that much interest in sex, but that is not true, because i m getting older and i still have interest. And i have really aprehension how it will come after treatment (any). I m versatile, depends on the partner i have, but how will it be after ??? no sperma ??? less erection ?? should i finally say good bye to sex life ??

[Ali-P in reply to cpl901]

I appreciate you concerned. I can give you my experience’s. Post opp, you will experience urinary inconstancy that in my case lasted approx five weeks. In the Majority of cases most men will recover from this. Due to the nerve damage during the operation and if there has been nerve spearing. You will suffer from ED post opp, that may last for a period of up to eighteen months. After a radical prostatectomy you will have dry ejaculation but will still be able to orgasm and in my case still have the same feelings. I had ED before my prostatectomy and that has continued into my fourth month after the opp. Of course you can take treatment for this. Hope this help’s answer your questions?

[cpl901 in reply to Ali-P]

You say you had ED before, but didnt you had hardons at night that would wake you up ? I m not an expert in sex and practice moderatly masturbation 3 times a week including some encounter (regular , or hookups), but i experience at night hardons too. Do you think they will disapear after surgery ? What about shrinking of penis after surgery ? A doctor suggest some physio exercises for continence before opp, did you have it ?

I read in a french forum that a guy recovered erection after 2 years because the nerve couldnt be spared but they would grow very slowly and turn back to the function. So one morning he experienced a morning lad. I dont have every morning a hard, but sometimes when i have one at the right time i just "use" it to get an orgasm and destress myself.

[Darryl Partner]

gay men and prostate cancer videos Gay Pride and Prostate Cancer

youtube.com/playlist?list=P...

[Ali-P in reply to Darryl]

Thank you Darryl, appreciate the link.

[cpl901]

Sorry it s me again i saw you where under active surveillance with Gleason 6 in 2018 and then Gleason 7 that pushes you to treatment. I think you did the right thing. I guess you will be patient with your husband byside and everthings will get better