Dealing with erectile dysfunction

Hi,

Did you have surgery or radiation?  Being sexually active is a question for your doctor to give you an answer on, might have to heal up for a few weeks.   I had surgery and it took me about a year and a half to get back to "close to normal".  Using Vasco's clock example I can get it to the 2 oclock position no problem.  It's gonna take a while so I would not expect much in the first month or two.  In my case I still had healing/improvement into my second year. 

Dave 3+4

Hi,

If you look around at reputable sources you can get ED from surgery or radiation.  Surgery is imediate and usually gets better over time and with radiation usually not much at first but ED can occur over time.  Everyone is different and heals at different rates so it's subjective.  Radiation can damage the nerves just as easy as a surgeon knife so there is a risk with both depending on how the radiation beam or knife hit the nerve bundles on the prostate.

Dave 3+4

Grinder said:

a while

Urologist told me on average one to two years. But like they just said, you have to get oxygenated blood into the corpus cavernosa and spongiosum. It doesn't take a Latin scholar to figure where they got those three words.

It took a year for me to get  a solid erection and my doc didn't put me on Cialis for 5months after surgery. But once I got the Cialis it really helped and at the one year mark I felt normal as possible erection wise. Now something no one is talking about here is for someone like myself that leaks sex has changed. I have a loving wife but oral sex ended 11 years ago after surgery. Understandbly I am leaking regularly so no need for further explanation. However, on the postive side sex in alternate postions had been great and you learn to adapt.

Of course, it's challenging because foreplay is also non-existence---but I still have great sex and since sex is so mental, it requires much more concentration

Does everyone get my drift?

I am considering surgery over radiation, I am 64 years old and a 4+3. I have been doing intense research and meeting several PCa experts but I don't understand a couple of things regarding impotence. Also, I do know, regardless what the radiation evangelists say here, that impotence will slowly occur a few years after radiation.

So when the term impotence is used in the side effects of surgery, assuming you have given it enough time after surgery (6 mos-1 year), with a pharma aid such as Viagra or even the shot, are you all saying that after a length of time even with pharma you're not hard enough to penetrate? It is not "stiff" enough or is it the problem of the angle of the flagpole? Which is it? Can you at least masturbate to a dry orgasm? Porn surf? Or is it just dead, dead, dead? It seems the clinical definition is not hard enough to penetrate, but can you still at least pleasure yourself? I need some clarification as to how you all are using the term here.

Does it mean you also lose your libido? What happens when you watch a very attractive woman walk down the street?

What bothers me the most is losing length in Mr. Happy, but I have read that only happens in 20-30%. 

Thanks,

Nick

Lucky64 said:

Basic question re: Impotence

I am considering surgery over radiation, I am 64 years old and a 4+3. I have been doing intense research and meeting several PCa experts but I don't understand a couple of things regarding impotence. Also, I do know, regardless what the radiation evangelists say here, that impotence will slowly occur a few years after radiation.

So when the term impotence is used in the side effects of surgery, assuming you have given it enough time after surgery (6 mos-1 year), with a pharma aid such as Viagra or even the shot, are you all saying that after a length of time even with pharma you're not hard enough to penetrate? It is not "stiff" enough or is it the problem of the angle of the flagpole? Which is it? Can you at least masturbate to a dry orgasm? Porn surf? Or is it just dead, dead, dead? It seems the clinical definition is not hard enough to penetrate, but can you still at least pleasure yourself? I need some clarification as to how you all are using the term here.

Does it mean you also lose your libido? What happens when you watch a very attractive woman walk down the street?

What bothers me the most is losing length in Mr. Happy, but I have read that only happens in 20-30%. 

Thanks,

Nick

Lucky64,

You answered your own question: DEAD, DEAD, DEAD, with no feeling at all. Mastu....ing your big toe or your penis, no difference. And yes, you can stimulate your soft penis to orgasm which is about non existent.

i meant dead without pharmaceutical aids like Cialis, Viagra or TRIMIX.

Trimix is only giving me erection. Nothing else works for me.

BTW, I am 52 and never had problem with achieving and maintaining erections before surgery and could stay hard as long as my wife wanted it. On weekends second and third round was a norm.

BUT NOT AFTER RP. NO SIGN OF LIFE THERE.

With surgery, it is clear cut. You loosing your sex life on day of your surgery.

With radiation, onset of ED is gradual over 4-7 years and good thing is you can have usable erections with Cialis or Viagra.

AND, LOOSING LENGTH IS TOTALY FREE. NO CHARGE FOR EXTRA WORK.

i forgot: EVEN WATCHING PORN, STIMULUS FROM YOUR BRAIN DOES NOT GET TRANSMITED TO YOUR PENIS. 

TOTAL DISCONNECTION.

MK

Dave, 

for sharing real experience with the intent to help others not to make same mistake I did, you called me not typical I am telling my real experience very troutfully, I am not making dark humor, not scaring newbies for what you may think. I want newbies to know how bad surgery is and how badly RP is damaging man's body functions. Surgery should be last resort not first one. SE are the hardest after surgery compared to any other treatment modality, and longest time needed just to recover minimally. 

RP downgrades QOL for every treated guy.

I did not see single good recovery after RP neither here nor at any other prostate Ca forum.

i hate term "usable" when it means total opposite.

MK

MK1965,

Sorry you have had such a bad experience with your surgery and probably if you had it to do over again you would have picked another treatment.  I picked surgery after I reviewed all the treament modes and I feel I made the right decision.  RP did not downgrade the QOL for me, I feel very lucky the cancer is out of my body with the minimal side effects that I have(3 yrs with no detectable PSA).  Surgery is an option just like any other treatment plan, just so sorry yours did not turn out well.  I had great doctors, a great hospital and a very typical recovery.  You said that you did not see a single good recovery after RP, I think mine was a good recovery so you are looking at the first one.  

Maxformer said "I had pretty bad BPH before my surgery, and have better control now that BEFORE the operation, although I still wear a liner if drinking beer. Otherwise, drier than before DaVinci."  sound like anther good outcome of RP.  So there is the second one.

Grinder said " RP is the way to go. I have recovered about 95% continence, and am not far behind on the ED"  So there is the third one.

I am sure there are just as many radiation success stories out there also along with some that did not turn out so well. Yes we do have to live with the outcomes good or bad, if there was a non side effect treatment all of us survivors would have picked it I am sure.

Just saying not everyone has had a "bad" experience wth RP but then again some do.  Surgery is not for everyone and the various radiation treatments are also sound choices.  As I have said before it's up to the individual to review the various treaments plans, study,study,study and then choose and learn to live with the results good or bad.

Dave 3+4

Lucky64 said:

Basic question re: Impotence

I am considering surgery over radiation, I am 64 years old and a 4+3. I have been doing intense research and meeting several PCa experts but I don't understand a couple of things regarding impotence. Also, I do know, regardless what the radiation evangelists say here, that impotence will slowly occur a few years after radiation.

So when the term impotence is used in the side effects of surgery, assuming you have given it enough time after surgery (6 mos-1 year), with a pharma aid such as Viagra or even the shot, are you all saying that after a length of time even with pharma you're not hard enough to penetrate? It is not "stiff" enough or is it the problem of the angle of the flagpole? Which is it? Can you at least masturbate to a dry orgasm? Porn surf? Or is it just dead, dead, dead? It seems the clinical definition is not hard enough to penetrate, but can you still at least pleasure yourself? I need some clarification as to how you all are using the term here.

Does it mean you also lose your libido? What happens when you watch a very attractive woman walk down the street?

What bothers me the most is losing length in Mr. Happy, but I have read that only happens in 20-30%. 

Thanks,

Nick

I doubt that the statement that impotence slowly occurs a few years after radiotherapy is generally accepted in medicine. Please provide evidence for that statement from reputable sources. Do note that, as we grow older, some of that youthful 'procreative' energy will go down. That's just 'natural'.

Little doubt that, due to the surgery, the penis is drawn into the body and will appear shorter. Not sure about those percentages (20-30%)? 

Libido is not affected by a prostatectomy. Hormone therapy (ADT) will do that due to the lowering of the testosterone.

With respect to surgery, one has to be specific. In some cases, nerves can be spared, but that may not be possible. And even when nerves are successfully spared, it will take time for them to return to normal.  How long also depends on age.

Hi,

The choice of surgery or radiation I feel is a personal decision made by you and your family and medical doctors after you have reviewed all of the treatment options. If you have done a good review learn to live with the results because once the surgery or radiation had ended, the man is left with the consequences good or bad.  Again I feel sorry that MK"s sugery did not turn out well.  Even sometimes if you pick the top docs and facilities the results are still not what you wanted.  You never know even with the simple treatments what the outcome will be so metally be prepared for the best & worse of it.  I smashed my finger a few years ago, went though therapy and it still took me about two years to make a fist, my finger was starting to stiffen up.  I kept working it & working it for two years and now I can make a fist.  But maybe it's because  I"m a old stubborn German who refuses to give up.

Dave 3+4

Old Salt & Swingshift,

Hi. For 4 weeks straight I have been diving deep into the depressing rabbit hole of a PC diagnosis of 4+3 at age 64. Fortunately, I have time to do this research. From this point on I will notate for you where I found the stats and probabilities of the side effects of radiation get worse over time. But I can assure you there have been many reliable (the only kind I respect) sources that have stated that the effects of radiation get worse over time. I personally know this from being irradiated in the neck in 1953 with 1500 other newborns, it was thought to fight SIDS, and for our entire lives we have had to be annually tested for thyroid cancer, many got it. So I know radiation takes its sweet time. If I have surgery I'd have to worry that they didn't get it all. If I have radiation I'd have to worry that the nasty side effects will slowly show up. The take away from my research is that side effects with surgery are worse at the beginning and get better over time, the side effects from radiation get worse over time. From all that I have read, the 5-7 year range after radiation is where incontinence, impotence and bowel (ugh) problems start to show up. Didn't happen to you? That's great. But you can't extraoplate that to others, right?

As for Cyberknife and Proton, they haven't been around long enough to even study the long term effects, so when you back out the marketing literature, there's nothing substantial in the research as to how they fare, although their patients may be fine "for now." I discount, no, let me rephrase that, I totally ignore any posts describing one  person's outcome for treatment, etc. because they are anecdotal, and that's what is on an internet forum, 100%. I do read them to gather information on the down side of what could possibly happen to me IF I went down that treatment path. What does it feel like when you get that specific bad side effect? That's what I want to know. But otherwise, I have to say, "Too bad for that guy." That does NOT mean it will happen to me. But a forum like this (and I am on 4 PC forums now), you don't collect information as to which treatment to go with.  Only a fool would do that, right? There's no way to extrapolate one man's outcome to how that may affect my outcome, because it's all a matter of percentages, skill of the surgeon, level of the hospital, etc. No way to know. And I find a lot of evangelists on these forums, all based on how their particular situation turned out alright, so therefore every other treatment option is less. Correct? I've been reading these posts on 4 forums for 4 weeks. That's what I gather. 

First, of the many books I have taken out on this depressing subject, I first look at the copyright year and discount any studies and stats because of their age, rather, I absorb the other meaningful material and ignore the old studies. Since I just retired from 40 years in PR, marketing, advertising, corp comm I ignore 100% anything created by a company, industry association, planted PR atricles, etc., and that is what I have come across in the newer treatments such as CK, Proton and even Brachy. These three often are the baliwick of independent urologists setting up their own clinics, incredible profit centers. Most independent urologists are dealing with patients of the age to be covered by Medicare, so they have perfected a way to milk that government cow, hence the tremendous growth in independent PC clinics that specialize in radiation. Especially when they include the imaging equipment charges. Just Google: urologist prostate medicare fraud. That is why I am now only interfacing with Chicago teaching hospitals. I don't want to trust the opinion of a businessman who has a profit motive, even if he is in a white coat...Even if he has no nefarious profit motive, the fact that he owns the place or is a profit partner will subliminally color his judgement, human nature being what it is.

Even the venerable Northwestern Hospital here has a gleaming new proton center, but when you look at the glossy brochure, in the fine print at the bottom of the page you see they outsourced it:

*The Northwestern Medicine® Chicago Proton Center (Center) is a joint venture between various Northwestern Memorial HealthCare subsidiaries and physicians of Radiation Oncology Consultants, Ltd., dedicated to providing proton therapy in Illinois.

It's like slapping the United or American Airlines logo on the side of a plane owned by a regional podunk airline. Don't get me wrong, if I had evidence that CK or Proton really, really, really worked, had a long track record, I would definitely do that over surgery. But there is none I can find yet. Zero that I can find that didn't originate from the marketing department, meaning the study was funded by an independent, academic source. I have seen a couple at 5 years, but with radiation that is not long enough. Is it right that someone on a deadly disease forum, who had a positive experience (thus far) with their treatment, scares the sh!t out of all the newly diagnosed guys who HAVE to consider surgery? That's my point. Just because it worked for you doesn't mean it is great for everyone. In fact, that's one of the big problems with PC compared to my other conditions of cardiac and diabetes, in PC every guy's condition is unique. 

What I noticed about radiation treatment evangelists, you are really bumming out those of us who may have to consider surgery, me being among them. No one wants surgery, but what if one's condition neccestiates it? Just say radiation worked for you, and don't hammer the surgery patients, OK? Google Ben Stiller prostate surgery. He's very satisfied. I am still gathering expert opinions. I abhor the idea of surgery with all the attendant side effects, such as losing length in Mr. Happy, but I do want to live longer, even if I dribble, etc. Just because you do not feel any of the down side of radiation side effects yet, that doesn't mean they won't slowly creep up on you. That's the nature of radiation: Slow...

Sorry for the length of this post, but here's two books that are a must read:

The Prostate Monolgues by Jack MaCullum. Funny and witty, this SI sports writer explains why he chose the path of surgery but does a critical deep dive into the new Prostate Industrial Complex, explores the marketing push of indie uros with their clinics for CK and Brachy. By the way, his surgery came out AOK and he still has good sex into his 70's. But if you are a fan of the Freakonomics podcasts you'll know everyone lies about how much sex they are having. Everyone.

The Great Prostate Hoax by Dr. Richard Ablin. Although the title is sensationalized (perhaps the publisher chose it?) the author is the man WHO INVENTED THE PSA TEST, and now feels horribly guilty that so many men have been butchered by needless surgery, especially those who were under a Gleason 7, by the greed of the uro business. After all, just a few years ago the urologists were mainly known for treating the clap, and now they are at the top of the pay scale with anesthesiologists, cardiologists and neurosurgeons. How'd that happen? Since they can now operate independently with their own freestanding clinics, including imaging machines, they are making a ton of dough.

So in sum, I did not intend to denigrate the knowledge of the evangelists, I notice by their post quantities they are committed, passionate experts. But when you push your treatment over others, and scare the sh!t out of newbies over a Gleason 7 who MUST consider surgery, that ain't right. I am on the wrong side of a Gleason 7, so I must consider surgery. At 64, 4+3, married for 41 years, I'm not in the singles scene or newly married. I want to live. I am in a different boat. In fact, we are all in our own boats. That's the scary thing, we can come together and bond in support groups and online forums, but unfortunately, we are each all alone. Unique. Different. Your treatment outcome will NOT be my treatment outcome. Nuf said.

All the best,

Nick

P.S. Why the Hell doesn't this forum have a spell checker?