I am 59 and have what is now (according to my doctor and PSA results) stage 2 prostate cancer, which my doctor insists can still be cured with surgery and is begging me to have, but since he told me I would forever lose any ability to have an erection, I have refused any and all treatment. I have been diagnosed for 4 years, and according to the biopsies and MRI, it is still contained, but the doc said the window is closing. My whole thing is my steadfast refusal to lose all sexual pleasure, which would be especially difficult as a gay man. Is anyone else in this situation? I want to enjoy as many orgasms as I can before the upcoming decline, and am at peace with my decision for palliative and hospice care.
What's so wrong with refusing all tre... - Prostate Cancer A...
What's so wrong with refusing all treatment?
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crazysexyfun
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I suspect that we're all more than a little focused on what will happen to our sexual being if we have treatment for PCa. A couple of thoughts: please consider radiation - at least get a second opinion from a radiation oncologist and a medical oncologist; it may change your thinking about treatment vs no treatment. Second, I think that your doc is correct - the window is closing. You did not say if you're in an active surveillance program. Are you? Third, treatment for PCa is NOT a death sentence for sexual functioning - particularly if you have radiation; it may take time to regain/restore your functioning (and you may not be affected at all sexually - each of us is different). On a personal note, I participated in a study that provided info, meds, toys (e.g., penis pump, cock rings, butt plugs) which helped me with sexual functioning. Let me be clear: I am certainly not the same as pre-treatment (e.g., "dry" orgasms) but then, again, I am older and age takes its toll on all. And, finally, having had close friends who died from PCa, you do NOT want to end your life this way. It can be a truly horrible death (not that any death is "good.") So, I hope that you will learn as much as you can before making a decision that may cost you dearly and consider other treatment options. You are relatively young. Think ahead to how you might view your life in retrospective. Ask yourself if you really want to die for dick.
Good luck with whatever you decided.
EdinBaltimore
Hi. Thanks for your reply. Yes, I am in an active surveillance program. The doc told me specifically that due to what he would have to do to remove it, since although it is still contained, something about cutting all the nerves robotically, or that is an area that is irregular (I honestly don't know, but remember him saying that. I have bad ADHD, so I wasn't really paying attention.....lol), that I would never be able to have an erection ever again. Is a horrible death certain even WITH palliative and hospice care? If it gets too bad, I've already decided I would most likely end it myself like how Robin Williams killed himself. I've battled severe mental issues for all my adult life too, so death really doesn't scare me at all. Hopefully I won't have to do it myself, as I plan on getting so pumped full of drugs (painkillers, etc.) that I am unconscious. My family is fully aware of my preference for being unconscious as much as possible, so hopefully I can receive plenty of pharmacological assistance early.
Hi crazysexyfun -I can completely identify with your situation. I was diagnosed with PC about 3 years ago at age 70. I was devastated with this news and went into further depression then I already had. I met with a urologist who immediately wanted to do surgery. I thought no way and saw a radiation oncologist who I was not impressed with. Then I saw another radiation oncologist who I liked but did not want to undergo radiation either. I then went on Act Surveillance for about a year. Then my PSA increased by two points (went to 9.5) in months. I was told I needed to do something soon as my cancer had now spread to the seminal vesical (Stage 3). I was told that by doing nothing I would die a very unpleasant death. At that time, I thought I wanted to kill myself. I would imagine how could I do that without involving others. Jump in front of a train or off a cliff, buy a gun and shoot myself among other means. I held off as I didn't want to really hurt the people around me. I then went back to the second radiation oncologist. He proposed 25 radiation treatment session (5 days a week for 5 weeks) along with ADT. I expressed my concerns as a highly sexual gay man and how losing my libido was a huge deal for me. He agreed for me to start the ADT on a monthly basis then I could decide to continue with ADT (Lupron). After 2 months, I wanted to stop the Lupron as the loss of my libido went from an obsession of masturbating 2-3 times a day to absolutely no desire at all (amazed that almost immediately after the first shot of Lupron I went to zero desire). I could feel the change happening in my body including a slight pain in my testicles (with shrinkage), as well as extreme fatigue, weight and muscle loss, skin irritations and hot flashes. I was mad and my self image was at an all-time low. The oncologist basically said I didn't have much choice since my testosterone was feeding the cancer and I had to continue with the Lupron (he is proposing 24 months). I tried to tell him how detrimental this is as a gay man. He admitted he had no real experience with this and said that he was learning from me. Still doesn't resolve the situation but at least he was honest.
Again, the thoughts of suicide came back. My PCP diagnosed me with anxiety/depression and started me on medications. Also, I started to see a therapist. These things have led me to put aside the suicide thoughts for the most part.
I've had ED for a while and Sildenafil has allowed me to get an erection so that is not an issue, but the lack of libido still remains. I have been able to have dry orgasms maybe once a week compared to 2-3 times a day. This is still the big issue for me and maybe I have to accept it. Really? My moods change and for me right now I am riding it out.
Segway (Rich)
This sounds so similar to me. However, I think doctors overplay the risk of dying from PC and underplay the sexual side effects. Every doctor who treats a PC patient should be REQUIRED by law to have the patient sign an informed consent that they are willingly giving up their sexuality. They'd never do this because no one would choose treatment unless, perhaps, they were 80+ and not having sex anyway.
I still try to pretend to be OK around friends and family. My thought process is "I pretended to be straight for 18 years, I can pretend to be happy for 10 or however long I have left" but it totally sucks. When I was on Lupron and got several bad tachycardia episodes I did nothing about them praying I would just keel over from a heart attack, which would still upset my family but not as much as if I committed suicide.
Good thoughts from EdinBaltimore.
It was 30 years ago and treatment options were different then, I watched my Dad deal with serial bouts with prostate cancer for roughly 30 years. It is what killed him at age 89. For much of his last year he was in hospice care. They were great, even trained my mother so to maintain her involvement in his care. But despite all that, I saw him go through hell. Hospice was an easier ride, but not a perfect solution. Then, having observed that I decided to take advantage of every possible cure, and only allow Hospice in when all else has been exhausted.
I think I understand about orgasms, I had radiation and erections and orgasms persisted for nearly 20 years, no ejaculate of course. I'm in my 85th year, my partner in his 93rd and has Alzheimers, the sex we have could pass the censors on a family nudist beach, but we can still enjoy our time together. We just chose to adapt, and live.
Thanks for your reply. I plan on as many drugs as I can get, as early as I can get, and to be unconscious as much as possible. Barring that, there are ways to hang yourself that are painless, that will ensure you are unconscious early on, before you die. But I am confident that with aggressive palliative and hospice care, I can be comfortable.
What's been helping me is sleep. I still have good dreams that are so much better than my actual life. Some weekends I will take an edible and an Ambien immediately after waking up so I can go back to sleep for 3-4 more hours and then will repeat this process so I can spend a minimal amount of time awake. I'm able to sleep for 14-15 hours doing this. Unfortunately, I work during the week so can't do this. My husband thinks it's just me being tired from radiation/ADT.
Fortunately, many of us now live in states that offer Medical Assistance in Dying (MAID) so we won't have to go through what your dad went through, which is a blessing. It also changes the mental calculation of whether or not staying on ADT and having a greatly diminished quality of life is worth it or not. For me, I'm thinking about whether being sad, angry and asexual is "living" vs. just doing MAID and all the negative thoughts will be gone forever.
I felt the same way when I was diagnosed at 57. You have a much better choice than crippling/painful bone metastases or permanent loss of sexual/urinary function. Please read this:
prostatecancer.news/2021/12...
Thanks for your reply. As a whole, modern medicine has a LONG way to go to properly address our special concerns and needs as gay men. The entire system related to prostate cancer care is geared toward straight men, and in my opinion, they are as different from us as cats are to dogs.
Unfortunately, you can't depend on your well-meaning urologist for the facts. You are forced to do all the work at a time when you are least able to psychologically.
I agree with you that this sounds miserable, BUT, depending on your stage, the nomograms show that most people (in my case the nomogram showed only 11% died in 10 years) survive 10 years or more without any treatment at all. Doctors grab us when we're vulnerable and scare us into accepting treatments that leave us as husks of our former selves. Also, there is hospice and medical assistance in dying so the pain can be avoided if it comes to that.
If one's goal is to live out a normal lifetime with no impact from the disease, one would do what I did. But if your goal is to commit suicide, there are better ways than what you suggest. I've seen men die of PCa, and it isn't pretty. Yes, opiates can relieve most of the pain, but living in a hospice on opiates and getting around in a wheelchair because your spine is cracked isn't my idea of a good death. A bullet to the head is a lot less prolonged.
I was thinking more of Medical Assistance in Dying (MAID) rather than hospice. Every day of ADT makes me more of a bitter, angry, sad excuse of a human being. I'm technically alive but am not "living" in any way, shape or form. At least with MAID I can die a man and the pain will be gone.
ADT is temporary - dying is forever.
The more I read the more it seems ADT is NOT temporary. I was watching a video where the physician said doctors were surprised to learn that six months of ADT can take 18 months after the last dose to recover from, and guys on it for more than that take at least five years to recover and 50% don't recover at all. So it sounds like it's a life sentence even when my official sentence ends.
What makes me so angry and bitter is that NONE of this was explained to me at the start. I specifically asked what side effects I might have and was told "you'll might get hot flashes and some guys suffer fatigue." No mention of any kind of sexual side effects at all. Even newer drugs like Orgovyx list sexual dysfunction as a <5% side effect. How they got that figure is beyond me--seems like it's 95% from those I've talked to
I feel, but can't prove, that doctors deliberately do this because they know if they were truthful up front more of us would refuse treatment with this poison. It's also probably why they jab us with 3 and 6 month shots rather than prescribing something like Orgovyx because once we find out the truth there's nothing we can do about it.
1) You are reading and viewing things you don't understand and don't apply to your situation. You get angry and fall down the rabbit hole of misinformation and conspiracy theories because of a natural inclination we all have called "confirmation bias" and a tendency you are exhibiting to catastrophize. I suggest you seek out a specialist in cognitive behavior therapy before you do permanent damage to yourself.
2) It is not true that testosterone suppression is permanent when used as an adjuvant therapy with radiation. In such cases as yours, ADT is always temporary, ranging from 6 months for unfavorable intermediate risk, to 1 year for high-risk with brachy boost therapy, to 2 years for high-risk with external beam therapy.
3) It is also not true that the recovery of testosterone is prolonged. The duration of testosterone recovery is highly dependent on how long you've been taking ADT and which kind of ADT you've been taking. For example, in the following study in which patients took 9 months of Lupron, the percent who recovered normal T levels was 66% in 6 months, 86% in 9 months, and 93% in 12 months.
ncbi.nlm.nih.gov/pmc/articl...
4) T recovery is faster with Orgovyx. Its half-life is only 24 hours.
5) Your T recovery rate is highly dependent on your baseline T level and your age.
6) Testosterone replacement therapy is available for men who have low,sustained PSA levels after therapy.
7) Potency and libido are two different things. Lack of testosterone affects libido (desire for sex) but usually doesn't affect potency (ability to get an erection). Every man requires different T levels to maintain libido. Radiation rarely affects potency (again, highly dependent on baseline potency and age).
Thanks for your logic and patience. You're right, I tend to panic and think "OMG I'm ruined" when the reality is, at least at the medical team level, they're trying to do what's best and save my life. I'm also panicking because several people said that, with radiation, you get about 1 1/2-2 years of "honeymoon" where everything works normally before ED sets in but they don't say whether the ED that comes later is treatable or not treatable. I did buy "Saving Your Sex Life: Guide for Men with Prostate Cancer" so am reading it now and will hopefully find out some legit info.
The people you talked to haven't got a clue about radiation. Mulhall's book is great for men gettging surgery, but he doesn't deal with radiation much because for men like you, it usually has no effect on ED.
Ed here again. At a minimum, I encourage you to seek second opinions from another uro and a radiation oncologist. Nothing to lose and potentially a lot to gain. And, remember, urologists are surgeons; they cut. I hear you re ending your own life; that's always an option. But, hopefully, you've got a lot of living to do with good sexual functioning.
For whatever it's worth, I've always found TA's advice worth listening to.
suggest you consider a radiological approach. I had CyberKnife treatment at NYU. Depending on the extent and location of your PC you’re quite like to retain your potency. The level of semen may lessen but you can still enjoy full erection and orgasm. I have yet to lose the ability to get an erection
My partner’s ex was diagnosed with PC several years ago and took no action. He is now in stage 4 has had radiation, hormone treatment and is impotent.
Most critical is for you to know that there are viable options to surgery that may be able to address you concerns.
Wishing you good luck in whatever course of action or inaction you choose to take!
I had SBRT, which is the equivalent of CyberKnife and lost all ability to have an orgasm. I have great erections but sex always ends in frustration. Even scarier is the info that ED from radiation comes on after two years, so rather than things improving for me they're only going to get worse. OP MAY enjoy full erection and orgasm, but may not.
Hi. I’m sorry to learn of your situation. Perhaps it relates to the treatment location and how much of the area was treated?
To those who read my earlier comment, these matters are best reviewed with your urologist and your proposed treatment team as each of us is different and what works well for others might not work for you
Going to go see a sexual health specialist in a couple weeks so hopefully can figure things out
Thanks you guys: This is an important topic. I'm 63, and I'm okay not having penile sexual function. A lot of the guys that I dated had ED, but we made it work. Also for me, the injections are too painful, and I can't use a pump because of a previous injury. When I am intimate with a man, I don't mind switching to the bottom position.
I'm not okay, however, about going back in the hospital for treatments for a 3rd cancer (lymphoma, then prostate, now Barrett's esophagus). I wonder if it's as simple as "going into hospice."
Healthcare workers in my hospital system, Northwestern in Chicago area, have indicated that they would abandon me altogether if I refused treatment, that I would have to pay for hospice on my own. I'm not sure that this is true. It's a difficult topic to bring up with healthcare providers, and they don't seem to know much about it. The professional patient advocate I spoke to was also quite vague about it.
I would suggest you look for a referral to a palliative care doctor. At my medical center they are the one who refers people to hospice and they know all about who pays for what and when. Palliative care is that time between treatment stopping and hospice (well, for me, when I move to NJ or VT and do death with dignity).
Thanks for your reply and advice. Part of me would really like to move to a place with sensitive, sensible, humane treatment for end-of-life, but I don't want to be separated from family at that time. I'm a type of person who is more than enough determined, aggressive, and demanding to get what I need and want, so I have a feeling that I will get no pushback from any medical team that's in charge of my comfort care in the end, but if things get too bad, I'm confident in my ability to end it on my own with a minimum of pain and trauma.
I understand. I had one of those brutal childhoods so I've been emotionally isolated all my life and although friends with my sisters, we're not all that close so when the time comes I'll be by myself, as usual.
I also am pretty much in my doctors' faces and, unfortunately, my current oncologist and his NP have a habit of scheduling appointments and labs in secret and then running me around for unnecessary (if plausible) treatments. Keeps their billing up, I guess, so the medical center likes them.
Now if I weren't on Medicaid and had lots of money they would treat me differently -- I know because several men in my prostate cancer support group at Guilda's Club (now Cancer Support Community) go to the same team and the retired CEO has a completely different experience than I or another guy and one, who is so far gone with brain fog that he can hardly find his ass with both hands, recently remarked that it seemed to him that they just run him around for tests and appointments just to run up the bill (I don't know if he's on Medicaid but he is certainly not middle class). I wish I could win the lottery and afford to go to NYC for care.
Best of luck with your journey -- I'm 10 years living with stage 4 (Gleason 9) so am on "borrowed time" as they used to say.
Thanks for your reply. I can't imagine any health care providers giving someone that ultimatum. If that happened to me I would immediately fire and report them (and probably cause a scene, but that's just the drama queen in me...lol).
Since the pandemic, healthcare in this country has totally gone down the toilet due a lot to the burnout of the workers and the greed of the insurance companies and hospitals.
As far as who pays for hospice, I believe it is totally covered by Medicare, and I think palliative care is covered by most insurances.
So far I have been lucky to avoid being strong-armed, dominated, or forced by my medical team to get treatment, but I'm sure it's because they know I wouldn't stand for it and would cause them much trauma if they did.
Ya I'm sure my industrial healthcare golf-specialist doctors would prefer to treat me 100% unconscious only/ in a coma (like a golf ball). I have a reputation now for asking questions and challenging medical decisions, and it has not really gotten me anything but grief, gaslighting, outright lying in doctors' notes, and prima-donna-doctor temper tantrums. I've tested the "patient advocate" system at two hospitals and at the Cancer Center I go to, and it's all a facade. If I wanted to go farther than that, healthcare corporations have more lawyers than I could ever afford to hire, and who wants to spend their last months and years fighting a legal battle? I reported a doctor and a PA to their state licensing agency 3 years ago for withholding care and inappropriate touching, and I have heard nothing back. I'd rather spend the end of life in hospice on palliative drugs with friends and family than with doctors who would prefer me to be an unresponsive vegetable (or dead). So much for being a "collaborative" patient who wants to be on a "team" with their doctors. The doctors have to want that also, else it does not happen.
I understand you fully. I was diagnosed at 56. My PSA was hovering around 6. And i was thinking i could save myself with healthy living (what i did for the last 40 years of my life...) but the risk of having the tumor cells outside the prostate was not very pleasant. I was looking around all possibilities to cure in a healthy way my body from this tumor. Radiation, HIFU (not possible in my case). Looked around for more than 6 month to finally go (back) to one of the best surgeon and his crew. So i choose surgery non toxic way. Side effect ??? of course, like every treatement. But once you have it, its up to you and your body. I m not overweight just a normal guy. Gay ?! When you fill a form at sex you have to fill M or F i would fill YES. Sex goes on even after surgery. Some orgasm are even more intense, and you dont feel so "tired" after orgasm, like i was after ejaculation. Boner ?! slower to come, but i m not 20 any more and how would it be now without surgery ? slightly better than what a recuperate until now ? Plus : i will never have prostate problems until the rest of my life. I hade a crew from surgeon for my RALP and they did a good job. A participated and i m still participating a lot for the rehab, and it is fine. PSA 0.03, hope it stays. Non problem with the first urination in the morning, like i had with prostate, especially after sex. May be i miss my semen, may be... but i can do myself on the couch and i dont do a mess. I can date if i want, but life is also something else than date and sex. I m single, gay, and if i want i date, if i prefer watch tv i watch tv, if i wanna go swimming or biking i just go for. Life is too short and it is not only having sex. Dont put sex against PC because they dont care from each other. I understand you fully, plus you are "young" (gays are always young) i m young too but without prostate and hopefully without PC until the rest of my days.
Okay, I thought I was the only one who had a successful RALP. ED and incontinence are a distant memory for me. No problem with getting aroused. The things that aroused me in the past are still turn ons now. My orgasms are intense, but they've always been. Undetectable PSA after four years. Had a wonderful medical team. They've pretty much have cut the cord and set me free to live out my days the way I wish. Do I spurt geysers of ejaculate? No, but did I ever? I'm not a porn star. I do ejaculate precum, though, and no, it's not climacturia (remember: I don't have incontinence), but the clear viscous fluid produced by the Cowper's glands. In other words, other than the recovery from surgery which took place during COVID lockdown anyway, I'm back to living the life I had before surgery.
Thanks guys for all of your comments. I really appreciate the advice and time you took to comment, as I realize how precious time is now in our very busy days.
I think a big problem with this topic is how totally clueless the majority of doctors are to our specific needs, since they are straight. Sometimes when I bring up certain concerns with my doctor he looks at me like I'm speaking Russian or something. The whole system is geared towards straight men and their needs and concerns.
I'm relieved to have made the decision to avoid the "conveyor belt" as I feel they treat you just like a product in a factory, and since so much humanity is now missing from healthcare. As bad as it is here, I can't imagine what it must be like in less developed countries, and with what we all spend on health care, we certainly don't get our money's worth.
Maybe it has been my many years of intensive psychiatric treatment and involvement with doctors, but I learned long ago that most doctors are either so incompetent (as is the case in psychiatry), or burnt out, or just only in it for the money (I actually had a doctor tell me once he only became a doctor for the money) that the actual treatment you get is woefully inadequate.
Thankfully I have always believed in massive amounts of drugs (from all my years of being a party-boy using street drugs to seriously disturbed mental patient on more mood stabilizers than Karen Walker), so I'm going to be demanding as many feel-good painkillers etc. as I can get. Everyone around me knows I'm happiest when unconscious anyway.
Thanks again guys, and best wishes with your personal journeys.
You're 100% right. I told my doctor this week that I will NOT continue on ADT. He, frankly, became unprofessional and told me I was "throwing my life away" but I feel the exact opposite--going on ADT threw away six months of my life, and probably more as it won't wear off right away. I'm just not myself on this drug and I want to be myself again.
I had radiation and am on six months of ADT. My sex life is basically over. I sometimes have suicidal thoughts and spend a lot of time extremely depressed. I've had ONE orgasm since my treatment. It was amazing--lasted much longer than the "before times" but that's it. I wish I'd had the courage to refuse treatment and just have a few good years. Post treatment, I now realize I'm likely to have MANY very unhappy years ahead of me.
If you see my post history, I was going to divorce my husband because our sex life had become very dull--tons of foreplay but never a main event. I really wanted to get fucked--and the universe fucked me. My husband has really been trying and I get good erections but no matter how good they are I can't cum.
I wish I had seen the MSK nomogram showing that I would only have had a 10% chance of dying in 10 years had I refused treatment. That would have been a risk I was willing to take. But instead I ruined my body.
I completely understand your dilemma. I was diagnosed with prostate cancer in my mid 40s, and I was/am a very active sexual being. None of my doctors pushed surgery or radiation, and one did say that given my age, I should seriously consider active surveillance, which I did. However, my dad, a stepbrother, and two cousins had/have prostate cancer (my dad and one cousin have died since my diagnosis but neither from prostate cancer), so I went with radiation. For a few months afterwards, my libido declined. However, eventually, it came back and even though I'm not over the moon about dry orgasms, my sexual activity is still strong (even better when I pop a Cialis). I'm now in my early 50s and am still very sexual active; however, if I had it do all over again, I would have chosen active surveillance. I think at the end of the day, you really must do what is right for you and prioritize what gives you life. Hope this helps in some way.
I was 68 (6 years ago) when diagnosed with PC. I had seen my brother die from another type of cancer (caused by the HPV virus), so I wanted it removed asap with robotic surgery. Yes, I no longer have erections but with the help of sex toys(vibrators) I can have decent multiple orgasms. Prior to prostate cancer, I spent too much time and effort on the prowl. Now with the internet/vibrators, I get rid of the urge to prowl and go on to do other things. Sex isn't the big deal that it once was and I am fine with that.
Hey guy,
And, so, now where are you? What did you decide to do?
Re-reading the posts here shows how varied our experiences are. And, for a great many of us, the posts illustrate how devastating ADT can be and how unprepared PCa docs are to treat gay men. I've participated in several studies that address PCa in gay men. The goal of these efforts is to provide better care and to teach doctors that our experiences and expectations and fears and desires ARE different than those of straight men. I also want to say that this forum/chat room was/is a life saver for me. I, too, felt alone, suicidal, depressed, angry, etc. at what was happening to me and the docs were mildly sympathetic but not helpful. Good luck to all.
EdinBaltimore
I had radiation, low dose brachytherapy, lost no sexual function. Please read my posts. Surgery will result in temporary or long-term loss, a lot of work to bring it back, though it can be done. But also other issues with surgery. Please read as much as you can and get treatment, choose wisely, and no, you are not likely to lose sexual function with radiation (unless you also have to do ADT, but then it's temporary as others have attested).
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