Older vs Younger

[luvbunda41]

i get people in their 70’s telling me at 49 that i did the right thing in having my prostate removed. My quality of life is zero. I found out my Urologist lied to me. Doing the prostatectomy is about the worst mistake of my life. If the surgery is not necessary, do not do it

[EDgreen]

Well, I'm also past 70, a year or so after prostate removal, but I'm not going to tell you that, since you haven't shared the whole story. Was the surgery for an enlarged prostate or for cancer? If the latter, how did you "find out" your urologist lied to you? Did you get a second opinion only after the surgery? What was the lie - that surgery was necessary or that it would not cause ED and possibly incontinence?

Deciding what to do when prostate cancer is detected early on is a weighty decision to make because the urologist can only rely on statistics, while any given patient may end up in any part of the spectrum. They may therefore tend to lean toward surgery out of cautiousness rather than a wait and see attitude because the patient may be among the less fortunate whose cancer will develop much faster than others. After the cancer is "out of the barn" - spread outside the prostate (depending how far) - the illness is likely to be incurable.

Of course, every patient should be given all the relevant information in order to make an informed decision, which entails weighing up possible lost quality of life against extended healthy life, especially for someone of your age.

[luvbunda41 in reply to EDgreen]

Hi EDgreen, sorry I did not go into detail. I was in my late 40's when I was diagnosed with prostate cancer. I asked my Urologist how much time I had left and he said I had a maximum of 5 years. As a result of this information I agreed to a so called nerve sparing surgery. I was told I would heal quickly and though ED might be a problem, nobody specifically told me there was a possibility it could be permanent. Two years after my surgery, I go abroad (to the UK) and see another Dr with all my medical paperwork. He told me that my gleason score of 3 +4 in no way put me in any danger of death. He said my Dr was talking rubbish. He said my cancer was slow spreading and could have continued in the same state for another 20 years. He said all they needed to do was test me 3 times a year and that if there was no PSA change I would have been fine. I feel like my Urologist rushed me into surgery by telling me I had 5 years to live. I would have liked to have the whole picture before making a decision. I think this was the worst mistake of my life.

[EDgreen in reply to luvbunda41]

Thanks. That indeed adds the context. If in fact the cancer at time of discovery was still completely within the prostate as far as the tests showed - after an MRI and a focused biopsy (or did you only have a blind biopsy done? - Gleason 3+4 (perhaps also depending upon the % of the 4 in the biopsy results) is precisely the tricky point, the borderline case that is decided on a personal and individual level. In such circumstances, sometimes a genetic test is done for more clarification, but there's no magic wand to foretell with 100%. Some men develop high grade cancer while the PSA remains low. There are youtube videos of men at your age who had their prostates removed and in fact recovered quickly and had no ED problems. One of them is a well-known actor whose name I forget. Younger men do have a greater prognosis of healing quickly and completely from the surgery with nerve sparing if the surgeon is skilled. Again, that's the statistics. Have you faced that original urologist and asked for an explanation? It's very likely that he took your family history into consideration in leading you to go for surgery.

I was past 70 when I was first diagnosed with 3+4 and the urologist suggested surgery (or hormone therapy + radiation (which in the longer term has the same ED side effects as surgery) because I still had "life expectancy," being that I was in good health and my parents and grandparents lived into their 80s and 90s. My mother just turned 93. So your cancer "could have" continued growing slowly for 20 years, but it also "could have" suddenly become more aggressive. It is impossible to predict for a single individual. A holistic picture of an individual's circumstances needs to be taken into consideration to reach the best decision for their specific life situation. Now, over a year since surgery, I am completely impotent. Injections are too painful and the one that is not is not very useful, besides the hassle of it all plus the cost. Cialis is useless for me as is a vacuum pump. The specialist for penile implants told me there is still a 30% chance of some healing, and that implants do not provide a real erection, and that the lower one's expectations, the more one's satisfaction. Not too encouraging, so meanwhile I'm not taking that route. So you learn to live with the new situation and enjoy what you are still able to enjoy. Explore all your alternatives (Cialis, injections, vacuum pump, Elator), but in the end, unless your urologist can be held legally accountable for malpractice and you have the money and time to do so, it would be better to accept a situation you cannot change and live the best life that you can. What's your alternative? Hope this helps and I wish you inner peace and a life filled with love and supportive people around you.

[luvbunda41 in reply to EDgreen]

@EDgreen, thanks for your response. I believe I had a blind biopsy with no MRI. I am also the first person in my extended family to be diagnosed with prostate cancer. My original urologist moved hospitals within a month of my surgery and told me he could not discuss my case with me. The second urologist I got told me my sexual life was over. I did not like him and changed Urologists. The 3rd Urologist was the first physician to offer trimix which sometimes works but is quite painful. He said the second Dr should not have told me that. Knowing everything I now know, I would have taken my chances. No surgery for me again, ever!

[EDgreen in reply to luvbunda41]

Sorry to hear that. I don't know how long ago all that took place, but nowadays in many places it's standard practice to do an MRI and then a focused biopsy if anything turns up in an initial blind biopsy.

Trimix contains Alprostadil, which is what causes the pain. I stopped using it because of that. Bimix contains two other less effective but painless agents that might work, maybe at a higher dose. I personally did not get good enough results from Bimix to justify all the hassle of ordering it, waiting a few days for a laboratory to prepare it, going a second time to pick it up, and of course paying for it. Maybe you have better insurance coverage.

Many urologists are not trained at all in post-operation treatment, and unfortunately it seems that was true for the one who did not offer you injections. I am now looking into a product you can find at Elator.com. Then there are implants, which have their pros and cons.

Taking your chances with a ticking time bomb relentlessly growing inside of you, however slowly, is not such a such a good bet. And never say never, as sometimes the side-effects of surgery are less life-changing while being more life-saving.

If you find a truly loving partner, an erection will be less important than the love between you. May you find one.

[luvbunda41 in reply to EDgreen]

Thank you for the encouraging words. My Dr’s were absolutely horrible in post treatment matters. I was operated on and abandoned. I remember an MRI after the surgery to see if I was healing right but none before. The fact that my wife left after my diagnosis scarred me in ways I cannot explain. I fear approaching women as i know a time will come when they want to be intimate. It is really hard but one must soldier on

[luvbunda41 in reply to luvbunda41]

my current Dr is the best. He is quite young and encourages me

[EDgreen in reply to luvbunda41]

Maybe you should look more deeply into what exactly from your past your wife's leaving you triggered inside. Seek professional help if you need it. As for the present, if you are open upfront about your condition - which of course requires fully accepting it yourself - you will then have nothing to fear, as any woman would know in advance what not to expect. It can be deeply releasing and healing if you could find such a woman who would deeply accept you as you are. Intimacy does not require penetration. Maybe accepting yourself is the hard part? But that requires opening your heart, rather than being a soldier. Do you come from a military background to have used that word?

[luvbunda41 in reply to EDgreen]

@EDgreen, maybe it is finding out after 14 years of marriage and thinking you are in an amazing relationship only to be dropped like a hot potato because of an illness. I lost my Dad when I was 9 years old. I was raised by my mother. If it was not for the loving relationship and support I got from my mother as a child, I would probably dislike women. I found out that 20% of spouses leave their cancer diagnosed spouse within a year of their diagnosis. This is something I should have known at the age of 20. I was a very sexual person pre surgery, accepting myself like this and telling another person is a huge step for me. Even my family do not know. No, I am not ex military but I have family members that are and frequently use that word.

[man0 in reply to EDgreen]

EDgreen One follow-up on something you mentioned: I agree that accepting oneself can be one of the most difficult parts. Unfortunately, IMHO, the deck is stacked against you (us). The topic has a stigma attached, and is mostly taboo in polite discourse. Media and entertainment industry portrays the having of this function as "being a real man", implying its absence means such a man can no longer ever be considered "sexy" by women (just watch a Cialis TV commercial) - that hurts, and hurts a lot. Men like us are guilted, embarrassed, scorned into feeling inferior, that we've lost are manhood. Even the terminology continues to be shaming: unlike in other areas, where pejorative terms have been replaced over the years with neutral ones to reduce emotional stress (e.g., like decades ago when the term "crippled" was replaced with "handicapped"), the entire community at large continues to use the term "impotent", stinging these men's minds yet again. Can't they find a more neutral term, like "nonfunctional" or something?

[luvbunda41 in reply to man0]

Mano, you hit the nail on the head. Three years since my surgery. I have only met one woman who was open and understanding. She did not think it was a big deal but i can tell you she is 1 in a million

[EDgreen in reply to man0]

Don't pay attention to all that media. There was just yesterday a news article about the currently oldest woman alive at 115 yo who said that her "secret" was avoiding toxic people. All that you are speaking about is indeed toxic speech, so just ignore it. You cannot change the reality. If you are in a loving relationship with a spouse who accepts you as you are, you certainly have nothing to care about how the media speaks about this. And if you are not in a relationship and are seeking one, you can only be truthful, not necessarily at the first date, but the truth will ultimately come out, so you can't hide it forever. You anyway would not want a spouse who is not understanding and accepting of you. You cannot change the world. You can only change how you relate to it, react to it or ignore it. You have no other alternative besides just complaining.

[man0 in reply to EDgreen]

EDgreen I like a lot of what you're saying; it's very prescriptively helpful. Two things though:

* You said "you cannot change the world". I'd like to think it still may be worth trying to educate people more about just how awful the experience of post-RP ED is for a man, mentally. I suspect many people have no idea yet go along with those views, but they wouldn't (i.e., they'd be more sympathetic) if they were aware of the extent of emotional distress. I still believe most people want to be kind and not hurtful; maybe I'm a dreamer.

* For me, I am lucky to have a loving relationship with a spouse who accepts me. But it still matters how women in general view someone like me for this reason: it makes a difference if I can feel my wife's peers envy her, or pity her. If it's the former, then I can feel prouder that I'm presenting myself to her as someone she can feel is desired by other women, but I'm all hers. If it's the latter, then I feel like an anchor weighing her down. So the real question remains and is, I think, germane: do women in general actually feel this way, or is that just an invented portrayal of today's culture, and is not true?

[EDgreen in reply to man0]

It doesn't seem helpful to you in any way to try to peer into what women in general think and feel about a man's losing his potency due to an illness. They don't even know about your situation, so you're really going down the rabbit hole with that train of thought. Focus your thoughts and feelings completely on your wife, showing her all the love and appreciation that you can for her accepting you as you are, and give her all the pleasure that you can during intimacy as best as you can. You have ten fingers. Use them! You have a mouth. Use it! Stop feeling sorry for yourself for a situation you cannot change. Enjoy life as best as you can. That said, look into penile implants. I have no experience with them to recommend them, but for someone with zero erections, they are better than nothing.

[man0 in reply to EDgreen]

Giving my wife pleasure during intimacy doesn't seem to be the problem, if I believe what she's telling me. I *have* learned how to use my fingers and mouth - also my tongue, forearm, palms, occasionally even knuckles. She tells me I've gotten good at it, and it brings me great joy to know I can do that for her, because of how I love her. I even say that, if my function were still to return one day (since I'm "only" 11 months), I'd like to still do it like this sometimes if she wants to - we'll call it "ladies night". 🙂

I guess if there's any "feeling sorry" in that department (i.e., our practice of intimacy), it's not being able to have a way to experience my own climax *with* her, in a simultaneous act together. There doesn't seem to be any way that she can help me achieve that - a way that fits within her physical, mental, and emotional capabilities & boundaries. That saddens me, and certainly makes it more difficult to "enjoy life as best as I can".

Anyway, thanks, I'll stop belaboring this. Appreciated your advice, I really did.

[EDgreen in reply to man0]

Happy if I was able to help you. Many men are able to reach an orgasm even without an erection, some a dry orgasm and others ejaculate urine, which is nothing to be ashamed about and an experience in itself. It may take more time and effort to stimulate a man to orgasm after prostate removal, but copious lubrication should help. Just relax into the moment and don't think about it or try anything on your part to make it happen. Just let it happen by itself at your wife's loving hand - even if it's not simultaneous with hers. You can share the grace together afterward.

[thefeelingscoach in reply to luvbunda41]

I'm 74 and have had ED that began two years after brachytherapy that I had five years ago. I read about the Elator (theelator.com) in this forum, bought one for myself, and am glad did. Sex is not as good as it was before brachytherapy, but the results are a lot better than Viagra or trimix injections for me and my girlfriend.

[luvbunda41 in reply to thefeelingscoach]

Really, I will buy one and try it. The sight of a syringe kills me. The sight of a syringe going into my privates is horrific

[EDgreen in reply to thefeelingscoach]

Hi there,

Can you please share with us how much of an erection you were able to get without the Elator? I'm not much younger than you and since prostate surgery in late 2021, I've had zero erections, except for with the injections, which I stopped because the erections were too painful. I can't envision how stretching a completely flaccid penis with the Elator can make a real difference. Please share whatever details about the experience of using it that you feel comfortable with. It may help a lot of men.

[luvbunda41 in reply to EDgreen]

i am right there with you. Same symptoms

[man0 in reply to EDgreen]

Could you point me to one or more of these youtube videos of post-RP patients who recovered quickly with no ED problems? After surgery they've kept telling me I can yet recover, and keep citing an approximate time range of 6 months to 2 years. or so, so "just be patient". So I'm searching for some existence proofs.

I'm about 11 months past, and starting to get suspicious. Yes, there has been some very small progress, but at this rate I highly doubt at 2 years I'd have anything usable in that department. And I'm beginning to be extremely doubtful of that "lower bound" of 6 months, thinking there's no way someone could have recovered that quickly - that they give out that time range to allow for a man's libido to "scale itself down" to match his capabilities after his mind has been frustrated for so long.

[luvbunda41 in reply to man0]

The Urologist i saw abroad told me only 12 percent of men get erections after a prostate removal. It is a disgrace that Drs do not tell you that before you choose to have surgery

[EDgreen in reply to man0]

Here are the two videos I was referring to of personal recovery stories after surgery, got whatever they are worth:

1. youtube.com/watch?v=hceijw3...(Not working as expected?) (If I remember correctly, someone left a comment to this video that the presenter was misleading people by giving the impression that recovery is the norm, which it is far from being. To his credit, though, the presenter does stress that each man will have a different journey and experience. The timeframe usually given is indeed, "Don't expect anything before 6 months, and don't expect anything after 2 years beyond whatever recovery, if any, has happened until then.")

2. youtube.com/watch?v=CPH8JuG...(Not working as expected?)

[Wolfnbear]

While I don't know your situation I'll just say Generally surgery is not a good thing but there are times it is necessary and life saving. It may change your quality of life significantly but often it's much better than the alternative suffering inaction can cause.

[Surv]

I’m 51 and had robotic prostatectomy at 49. My cancer was aggressive and I have a family history, involving prostate cancer leading to death. Personally, I wanted to wait and see, but the details were stacked against me. So far my penile rehab has been slow. Pills are not working, but I’m pumping daily and using trimix injections. The combination of the the therapy and a supportive wife have kept me from becoming overly depressed, but I can easily see where one’s quality of life could diminish. As a ‘younger’ man, my approach has been to act like I’m training for my first marathon. Yes, I’ll be completely out of shape at the start, but small improvements do show progress. I’m trying to stay as positive as possible and continue to make minor changes to my therapy routines to improve the outcomes. I’m not typically a patient person, but in order to complete the marathon, I have to have the upmost patience.

Hang in there. My fist 12 months were disappointing, but I’ve seen good progress in my therapy in the last six. Patience is key.

[luvbunda41]

Surv, thanks for your response. Also appreciate your wife, she is a fantastic woman. My wife left our 13 year marriage after my diagnosis. I asked my Dr point blank when i was diagnosed about how much time I had left he told me 5years, that was my reason for my surgery. After my surgery, another Dr told me i had a 3 plus 4 gleason score which meant my cancer was not aggressive and I shouldn’t have had surgery. This happened 3 years ago. I thank God for my psychologist and I now hate Drs. If it was not my psychologist, I wouldn’t be here

[trimix52 in reply to luvbunda41]

I also am 70, but had RRP at 66 and had hoped to regain some function (bladder and sexual) which I did not. I know a friend who had a brother who had the surgery young and then decidedly opted for radiation instead. All in all, I probably would have done it again as 12 of 13 biopsy cores were positive and initially, I was a Gleason 8 which was downgraded by the pathologist at Hopkins to a 4+3 Gleason 7 after surgery.

This disease is difficult and there are definitely patient decisions to be made at whatever stage you are at. The problem is that when you are diagnosed you face a certain shock effect, and you can be man handled by Drs., especially those intent on doing as many procedures as possible. My medical oncologist (I am experiencing bio-chemical recurrence at this point PSA at .432) says there are a lot of surgeons living in mansions that were paid for through unnecessary surgeries. That is why I stopped taking my PSA for 20 years as I didn't want to be caught in the surgery mill. Eventually that decision will prove to be my downfall as we caught things late in Stage 3. My medical oncologist also says that anyone who says a surgeon or radiologist saved their life is naive. There may have been nothing that needed to be done. The problem is the disease, for all the research, is still just using a prediction based on statistics, PSA numbers, Gleason Scores (which at least have a certain tangible nature despite some subjectivity on the part of pathologists), doubling times, etc. that are used to make therapy decisions. Surgeons like to operate; radiation oncologists like to shoot you full of Xrays; Medical Oncologists want you on hormone therapy or worse; all of which have severe effects on a man's quality of life and his perceived self-worth as a male. I still struggle with that and at least my wife has stuck with me so far.

Every person who is diagnosed with cancer needs to take a step back, weigh the options and self-advocate. Otherwise, Doctors will make the decision for you and the side effects of radiation as well as surgery are irreversible. My radiation oncologist tells me that my best chance of being cured right now is to have radiation to the prostate bed and surrounding lymph nodes. Some people who have had that treatment say, "Don't do it, they'll burn you up." Again, I respect the R.O. because he is giving me the best advice, he can on curing the disease based on statistical models. But the side effects could be debilitating and being alive is not the same as living life! I have eventually gotten him to agree to irradiate the lymph node(s) where there is a high likelihood of cancer as shown on the PET scan. Again...there was back and forth there...not just "OK Doc whatever you say."

I regret your situation and can identify with it. This disease is not easy, and removal of the prostate won't necessarily cure you but will likely have some huge side effects. Some are luckier than others, but there is no way to tell beforehand who those people are ( Age helps, but is not foolproof either as you are finding out). That's the issue...uncertainty, and I don't think that is going to change any time soon. Hopefully, more people will find forums like this one BEFORE making their therapy decisions, but Urologists don't seem to point you in that direction. They send you on to another doctor instead. It's like a closed circuit. I actually asked my Urologist before I would trust him if he could get me up to Johns Hopkins for surgery if I needed it as opposed to keeping me in the local health care "syndicate" and when he said "yes", I let him do the biopsy. Good Luck.

[luvbunda41]

@Trimix52. Thanks for your response. I went to the Urologist totally prepared to take my chances. He told me I had 5 years to live. I told him I was not afraid and would take my chances, he responded, it is not that you will die, IT IS HOW YOU DIE. He also told me that the suffering would make me become a liability to my family. That was my greatest fear and he stoked it. I began to suspect him when on my first follow up after the surgery, he suggested that I might have a small amount of cancer near my bladder and that I should proceed to get radiation treatment. I told him a firm NO! I realized he was trying to turn me into a guinea pig cash cow. You see I was not afraid to die. My greatest fear was to become an invalid. The Dr in the UK after reviewing my medical records said I should have been a candidate for watchful surveillance, he said there was no need to rush me into surgery with a 3+4 Gleason score, he also said I should have been informed that only 12 percent of surgery patients can get an unaided erection. I love your quote, "being alive is not the same as living life". Which man wants to be alive and not be a man. I would rather be dead!I had a friend that was diagnosed with pancreatic cancer and given a year to live. He rejected all medical treatment, made some lifestyle changes and lived well for another 18 years. He died recently and lived to be almost 70. Everyday is a struggle but I thank God for my psychologists. If I could do it over, I would skip the surgery.

[Tom-slick]

It depends on the type of cancer, how aggressive the cancer is, and the position of the tumors. All kinds of things bear on the decision on how you should treat your cancer. The absolute best way to protect yourself from dying of prostate cancer is often to have a complete prostatectomy. It is never a bad idea to get a second opinion, but if you have a fast growing cancer, any delay can potentially be life threatening. Their are a number of ways doctors treat. It depends on the cancer, your age, and you can weigh the options. I was not a candidate for nuclear seeds, and only one doctor in hundreds of miles did freezing. The Urologist I dealt with was a very competent specialist with Robotic Surgery, so I felt very comfortable going that route as surgery has the best mortality rates.

If it is ever a choice between living, or some of the problems that can be connected to prostate removal, I choose life. Most of the problems can be addressed.

I had problems, my doc. failed to emphasize, including incontinence for a few weeks, and still some minor leaks.

ED is a fact of life, but I’ve learned how to still have an active, and enjoyable sex life.

Sorry, you are having problems. If you think the doctor defrauded you, or is guilty of malpractice, then see an attorney.

Regarding sex. Post surgery sex, and connection to my wife is better. It opened better communication, and awareness of how to enjoy our romantic liaisons.

Anyway, sorry you are experiencing problems, and good luck!

[JRPnSD]

How did your Urologist lie to you? Read my post about my experience with radical Prostatectomy. I am glad it was an option for me. My QoL is excellent...and I negotiate the ED matrix. No silver bullets in the cancer fight.

[luvbunda41]

My psa was extremely low (3.5) and he told me I had 5 years to live. I found out later that was not true. He also told me I might suffer from ED for a couple of years but I would be okay after 2 years, well it has been 3 years and it is dead down there. My life was thrown into turmoil and I almost lost it. Thank God for family and friends I was pulled from the brink. I feel like my Dr did not give me enough information to make a good decision. You should thank God your QOL is excellent. Mine is not. I regret the surgery and would have gladly taken my chances. What do you mean by negotiating the ED matrix. I do not understand.