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Dealing with erectile dysfunction

jay_cutl
Posts: 1
Joined: May 2017

How soon after prostate cancer treatment can I be sexually active again?

Now ED drugs don't help me.

This is killing me.

VascodaGama's picture
VascodaGama
Posts: 2969
Joined: Nov 2010

Jay,

Welcome to the board.

Unfortunately ED is one of main effects from PCa treatments and in some cases it lead to divorces. ED can be experienced during a short period but it can also last forever. It depends on the therapy, the extent of the disease and the way one treats it after intervention, for avoiding permanent complications.
Too much cutting of local nerves can cause a permanent effect. Some guys go through implants to get back into the affair. In any case the normalcy never returns to the level it used to be. One needs to adapt and try to perform accordingly.
I had radical surgery and was taught by a sexologist (one of my team doctors looking after my case) on what to do for avoiding total damage. He recommended me to be active constantly massaging the penis and testicles, masturbating and using Viagra and pumps for projecting blood into the penis cavernous area for oxygenation. The will was always there but the connection was never as before. In two months I managed to get it pointed (sometimes) to the four o'clock direction. It never returned to the three o'clock position. Our wives need to understand and help for the sake of the couple's well being.

Hope for improvements,

VG

Clevelandguy
Posts: 428
Joined: Jun 2015

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

Swingshiftworker
Posts: 1013
Joined: Mar 2010

OP: I assume you had surgery because ED post radiation is seldom an issue. 

Following surgery, I've heard some men say that they regained erectile function in just a few months but "normally" doctors tell their patients that it will generally take 6 months to a year to regain that ability and, in some cases, it never returns in which case a penile implant would be required to simulate the act.  It just depends.

Good luck!

Clevelandguy
Posts: 428
Joined: Jun 2015

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
Posts: 438
Joined: Mar 2017

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.

lion1
Posts: 241
Joined: May 2007

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?

 

MK1965
Posts: 165
Joined: Jun 2016

Lion,

if sex is so mental, then for sex would be enough one person. That is SOLO and I do not call it sex. 

Sex by definotion is engagement of two into penetration to bring each one of them to orgasmic release and physical satisfaction.

MK

BBI2011
Posts: 2
Joined: Jun 2017

Back in 2006, I was diagnosed with high stage 2 prostate cancer. My Doctor suggested only 2 alternatives, watchful waiting or surgery. With no hesitation I decided to go with surgery. After 2 1/2 days in hospital I was released and told to make bi-yearly check-ups for 5 years. So far cancer free to this day. I am happy to be alive and the ED is secondary to my daily life as a survivor. Theres no denying the fact I am missing out on the intimate pleasures with my girlfriend, that part i do have an issue with, but like is such, i accept life over some of its pleasures.

Lucky64
Posts: 29
Joined: Jun 2017

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

MK1965
Posts: 165
Joined: Jun 2016

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

 

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Luck64 said: "I do know, regardless what the radiation evangelists say here, that impotence will slowly occur a few years after radiation."

How do you know this, Lucky?

I'm one of those radiation "evangelists" but I'm also a realist and have not said anything about radiation or surgery that cannot be verified by the experience of men here and elsewhere who have had chosen both surgery and radiation for treatment.

I know that, IN THE PAST, there was a lot of talk about how the negative effects of radiation will emerge after 10 years or more -- including recurrence, impotence and/or incontinence -- BUT it's been well over 7 years since I was treated and I have not read any current studis PROVING a correlation between radiation treatment and the delayed onset of any such problems.

If you've got links to studies proving this, I'd like to see/read them.

Fact is, incontinence and ED increase with age w/o regard to radiation and, fact is, most men who have been treated for PCa are older to begin with.  I was 60 when treated and I'm going on 67 now.  

As for the recurrence of PCa or the emergence of other cancers, the reports of recurrence are still more prevelant for surgery than for radiation.  Can't count the # of men who report that they have to have radiation done following surgery but seldom here of anyone treated w/radiation who requires follow up treatment.  The is a man on the forum now who is reporting a failure of brachytherapy treatment but this doesn't surprise me because BT is the least accurate method of radiation treatment for PCa, which is why I rejected it as a form of treatment for myself.

As for additional cancers following radiation treatment, it is often alleged that radiation will CAUSE other cancers to occur later in life supposedly because of the damage it does to the body.  Again, I have no proof that this is so.  Multiple cancers tend to run in families (ie., they are genetic) and I have seen no studies PROVING that radiation alone is the CAUSE of collateral cancers.

Again, if you know of any such studies proving this, I'd like to see and read them.  

FWIW, I have never had a problem w/incontinence.  It was the opposite problem -- urinary frequency -- that caused me to consult my primary physician in the 1st place which then led to my PCa diagnosis.   Also, I am still able to get an erection and am still sexually active to this day.  There is also no indication of any recurrance of my PCa nor any evidence of other cancers, even though my mother had mutliple cancers and I should be at risk for such.

Lastly, I don't know how you can believe that the reduction in the visibile length of the penis following surgery is only limited to 20-30%.

Who said that? 

The reality is that, when the doctor removes the prostate, a 1-2" gap is created between the top of the interior end of the penis and the bottom of the bladder and that gap is closed when the two are attached and the visible portion of the penis MUST retract into the abdominal cavity as a result.

The only "solution" to this problem, which has not been proven to be entirely effective, is to use a pump or jelqing and/or cutting the suspensory ligaments in order to  try to reextend the visible length of the penis BUT, fact is, everyone who has surgery will experience some degree of retraction.  Anyone who says otherwise is either lying or is just a freak of nature.

 

Old Salt
Posts: 720
Joined: Aug 2014

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.

Clevelandguy
Posts: 428
Joined: Jun 2015

Hi,

As most people will tell you there are different recovery rates and they vary so much.  One man here on this board recently said is urinary leakage was almost gone after a few months after surgery.  Mine took about a year to get down to an occasional stress dribble.  MR1965 has no feeling in his penis, I never had any of that.  There is no set in croncrete predictable side effects from surgery or radiation.  If you go to the CK site they will tell you "Side effects can be severe, however, leading to pain, alterations in normal body functions (for example, urinary or salivary function), deterioration of quality of life, permanent injury and even death. Side effects can occur during or shortly after radiation treatment or in the months and years following radiation."  Some people have more side effects than others with the same treatment.  Basically it's a crap shoot, MR1965 had some severe side efects, a lot of other people have had much better outcome(me).  So don't believe the treatment haters, do you own research, make your own decisions based on YOUR research so in the end you will be satisified with your decsion of radiation or surgery..  To all of your questions Mr. Happy will not be any shorter when he is standing tall since they don't touch that.  Sex can still be lots of fun even with no errection if you have the right partner, at least I did not loose my sex life after surgery as other have indicated.  Be very wary of people that constantly talk this or that, they are not usually giving you the straight facts.  I feel sorry for MK1965 but he is not typical of most of the people on this board with his results.  I feel he is at the exstream worst end spectrum but there are also a lot of people on the opposite end that are doing fine.

Dave 3+4

MK1965
Posts: 165
Joined: Jun 2016

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

 

Clevelandguy
Posts: 428
Joined: Jun 2015

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

Grinder
Posts: 438
Joined: Mar 2017

MK... It would help everyone facing PC to figure out exactly WHY your RP results are so much different from ours. Was it robotic / DaVinci or was it open surgery? Was nerve sparing? What about the experience and competence of the surgeon. I appreciate your concern to stop anyone from dealing with what you are facing, but it would help them if you could figure out the pitfall that resulted in the ED to help them avoid it, and not just throw the baby out with the bathwater.

I still breathe a sigh of relief every time I urinate like a horse now, instead of having a freaking Foley catheter sticking out of my business. There is NO sex life solo or otherwise with that inserted. And I have incredible feeling in my business. My massive prostate was ruining my sexlife, by numbing orgasms and creating a pain in my business. I don't want to sound like Penthouse forum so I will spare the details, but I am soooo much better off now after DaVinci RP. Please don't scare anyone away from RP that may greatly benefit until we discover what happened and why.

If this is too difficult to talk about, we understand, but you will be doing the new guys a solid if you can pinpoint what happened.

Old Salt
Posts: 720
Joined: Aug 2014

I am not a fan of prostatectomies, but have learned that in some scenarios they make medical  and personal sense. Grinder makes that point. Moreover, I have read many other reports, mostly on another prostate cancer forum (Healing Well), of successful prostatectomy outcomes. But one may have to accept a new normal after such surgery. Things won't be exactly as before, but winning a battle against a potentially lethal cancer should be worth it. TO emphasize the point, many do die from prostate cancer and the final phase can be terrible.

MK1965
Posts: 165
Joined: Jun 2016

to guys with "good RP outcomes"

it sims to me, couple of guys on this forum are promoting surgery as best modality of treatment and can not accept me and others with bad surgical outcome. Honestly, I can not praise my RP outcome  as great, outstanding or whatever is the word you guys would like to hear. I am sorry for being totally honest. 

I wish everyone of us here had something to brag about , but, es tut mir aber so leid  " my was not one.

Some of you might remember that surgery was not my first choice but I decided to go with surgdry being influenced by my wife who happened to be an RN in urology clinic at teaching hospital and some of guys who reported "good outcomes " even on this forum.

I wish I did not pursue any treatment and stayed on AS even against medical advice.

For treatment is never to late when it becomes necessary ( while being followed regularly)

Now, no way back. 

I am out. I do not want to lower score on surgical outcome. Keep promoting.

MK

Clevelandguy
Posts: 428
Joined: Jun 2015

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

Lucky64
Posts: 29
Joined: Jun 2017

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?

 

Grinder
Posts: 438
Joined: Mar 2017

Well that was a cold glass of reality splashed in my face! Felt good too. Let's face it, health care in this country has escaped the free enterprise system, and now hospitals and doctors charge the maximum they can expect from the insurance companies, not what market forces of supply and demand should dictate.

Hence, just like Lucky says, we've got overproscribed medications, treatments, and surgical procedures, so that sometimes we don't know if a procedure is necessary to save our lives, or necessary for the new wing going up at the Urology clinic. The only reason we know about the urology prostate Medicare fraud is probably because the feds were involved in paying the bills instead of the insurance companies.

I mentioned I went I went through five urologists... I recounted and it has been six. I could tell you the stories, but its a waste of time. But I know when someone sees me as a cash cow and not as a patient. That is still one thing about Urology, that part is still operating in the free enterprise system, I can always go to the competition at another urologist or another clinic. In fact we are having this discussion because there are competing companies out there for our PC dollars. It's sad, but still an advantage for us. If this were a socialist system, the government would just tell us whether or not we get treatment, and what kind. 

Which leads to the story about heart scans. ICYDH... The heart scan that checks calcium levels in your arteries, which is indicative of damage that the body uses calcium to make repairs, turned out to be a good indication of present or future heart issues. When the technology was marketed, the stent makers and the hospitals et al that performed bypass, all fought it and tried to discredit it. Why? Because it cut into their profit margin and threatened the numbers of patients needing their services. If everybody got heart scans and got advance warning of their danger, they could use less invasive solutions before it got out of hand. 

It took NASA to realize, after two ground control employs dropped dead of heart attacks right in the middle of launches, that they would develop the technology and now you cannot enter their program without a ZERO heart scan score.

There are still professionals who poo poo the heart scan. In all this, we have to realistically wonder, what are the MOTIVES of any particular health care professional or establishment. The heart scan manufacturer wants to make money. So does the Urology clinic. 

But there is one element I trust, and yes everyone can disagree, but I trust Christian doctors who I can confidently say are living their faith. Yes, there are Christian doctors who are crazy profit motivated, but that is where I have to make a judgment call. That is how I finally settled on my urologist surgeon. And I knew another patient of his that high regard for him. Yes, there certainly are atheists likely who are competent surgeons, but I want someone who will consider even greater personal responsibility for my success than just a dollar sign bottom line.

The one other thing I thought should be mentioned after reading Lucky's astute analysis of our profit motivated health care system.... The guys on this forum have no MOTIVES for manipulating us. The surgeons, hospitals, clinics, device manufacturers all have profit MOTIVES for their prescriptions, which is all well and good until profit comes before advice that is best for the patient. But on this forum, I don't know you, you don't know me, so unless something is going on that I don't know about, there is NOTHING I can gain by telling you guys what happened to me, and nothing you can gain by telling me your opinion. That's why I didn't want MK to give the impression we are some sort of evangelists for robotic PC. I am only telling you what happened to me, so you can become better informed. So kudos to Lucky for leaving no stone unturned to make decisuons. I only know what happened to me, and can give some insight what may or may not happen. But I can't predict what will happen to anyone else, BUT rest assured, I don't have any hidden agenda or vested interest in any decision you make. And I regard the advice from the other guys the same way, which is why I value it so much. What do they have to again by lying to me? Nothing. They could be wrong, for sure, but they have no reason to steer me wrong... 

Unless they are pathetically lonely guys on their basement computers looking for some kind of affirmations for their opinions and self worth by pretending to be "experts"... But no, they have Facebook for that. I'm pretty sure prostate issues take a lot of wind out of our proverbial sails. And if PC doesn't humble us, losing 2 inches of our manhood sure as h*ll will. Ours is a club NO man wants to belong to. The shortened **** club. I nominate George Castanza to be club president.

 

MK1965
Posts: 165
Joined: Jun 2016

It looks like pro surgery guys have full control of this board.

i can not make post any more.

MK

MK1965
Posts: 165
Joined: Jun 2016

I am wondering what happened to my yesterdays post.

MK

Clevelandguy
Posts: 428
Joined: Jun 2015

Mk, I think you have it all wrong.  Post what you want, just post in a logical thought out manner.  All opinions should be welcomed.  Your kind of going off the deep end. 

Dave 3+4

Grinder
Posts: 438
Joined: Mar 2017

Mk...Au contraire, like CG says. I still say we are not "evangelists" for RP. If you disagree with RP then by all means say so. But I still wish we could get to the bottom of this as a favor to the guys who are still making a tough decision. WHY do you think it was unsuccessful? Besides, when you said "I'm out" I had the impression you were done with the forum. I am glad to hear you are not "out".

I probably should admit something I haven't mentioned. About a year before my RP a friend had just gone through it. He pushed it as a great help to him. Just before that a neighbor and friend had passed away from PC. My other friend warned me of potentially permanent sexual dysfunction, but after the death of the neighbor it seemed a small price to pay. I was determined to get it OUT. Besides that, I was dealing with a recurring prostate infection that was later determined to be Staph. If you know anything about Staph, you know it is very nearly impossible to eradicate. Antibios could only make it dormant only to recur in another bout of prostatitis. I was afraid of having sex with my wife for fear of infecting her. This had been recurring off and on for ten years. So I had nothing to lose but a Staph infected prostate, in exchange for the ability to urinate again.

That's why I keep saying, for some guys who have more prostate issued than just PC, RP is the way to go.

But for other guys, it may NOT be the way to go. And you need to tell them that. But they should also know why and what happened. If you refuse to comment any further, I will likely bring your case up anyway. 

Also, I am just glad I didnt have to go through what my neighbor went through. He insisted on warning all his family and friends to get tested and guard against it. Advice not lost on me. I am betting he would have given anything, including his sex life, to have had an RP  long before his PC was diagnosed and it was too late. He was older than me, but in great physical condition. He raised and ranched race horses. Now his widow sold all the horses, the ranch is overgrown with weeds and she is about to sell the house ranch and barn and move away. She also would have gladly given up their sex life to have him back. They didn't have any sex life once the PC took off anyway. So between my two friends and my recurring Staph infection, my decision was imperative. 

VascodaGama's picture
VascodaGama
Posts: 2969
Joined: Nov 2010

Is it true? Were your post flagged?

As far as I know only commercials or posts with links to advertisements are flagged and disposed. The conversation you have been exchanging is important to those looking for a decision. Many do read but do not participate so that one should write with that intent in explaining details to help others.

Can you repost what was banned?

 

MK1965
Posts: 165
Joined: Jun 2016

Grinder & Vasco,

Missing post had some low stats on ED recovery post RP, and I asume  that is why it went missing, not showing on this tread. I do not know how I can recover my post.

Grinder, I am not hiding anything Details are known. I had robot assisted RP (Da Vinchi) with bilateral nerve sparing according to my surgeon. My RP took 5+ hours to be completed and what surgeon told my wife after surgery is that my RP was complicated by Turp which he performed 5 months prior and he did extensive work on my bladder neck reconstruction before he  was able to connect it to distal urethra. I also had pelvic limph nodes disection total of 8.

I wish I could know if this additional work on bladder neck reconstruction caused big loss of penile length?

Because of change of job and insurance, I am not followed by same doc who did Turp and RP.

If you got to my tread "Surgery tomorrow " you will find more details on my recovery.

(In brief; incidentally diagnosed with Gleason 6 after TURP, had TRUS biopsy which showed Gleason 7(4+3) 1 of 12 pos  with 10% of core involved  which thankfuly post op was downgraded to 3+4 but multiple locations on both sides which was graded as pT2c. I wish I stayed on AS against medical advice with someone who is more relaxed with 4+3 in small quantities as per biopsy. I could enjoy some good number of years before treatment would be necessary. I totaly think this explains my frustration.

At time of diagnosis and surgery, I was healthy 51 year old non drinker, non smoker, not on any medication, in excellent shape, very active (involved in sport as sport officia officiating good number of games).

No fine print, nothing hidden.

 

MK

Lucky64
Posts: 29
Joined: Jun 2017

I too am 4+3. The 4 means it's too agressive to do AS, that's my understanding. You'd be gambling.

Nick

Weird Harold
Posts: 11
Joined: Jun 2017

I am 2.5 years post-op, retropubic prostatectomy, pT3b, and radiation. I need chemicals for the Ed, but I have a perscription for Sildenafil and order it from a compounding pharmacy. It is the cheapest way to go and it works for me.

Grinder
Posts: 438
Joined: Mar 2017

Just my opinion, which is wholly unqualified, but I am guessing the previous TURP procedure may have a lot to do with the complications of the RP. If true, this is a wake up call for guys with BPH who are thinking about TURP as a solution, if they get a positive biopsy later on for PC, the TURP could make RP  untenable. I was offered several procedures... TURP,  robotic RP, open RP, Seeds, radiation... TURP was suggested to handle the immediate massive prostate issue, then AS or treatment later to handle the PC. But my friend urged me to get it out and done with. And with the infection history, TURP was not a viable alternative. But the urologist wanted me to know everything possible to make the right decision.

If this is true and TURP complicated your eventual RP, guys need to know about it. At 51, it is way too early to predict PC potential. Some guys will get it, some will not, barring family history. So if young guys are getting TURP procedure done at 50, they may be limiting their options if they test positive for PC years later.

After all, the TURP procedure is the wild card in your history that makes it exceptional from other's RP experience as far as I can tell.

Am I chasing a red herring here, or does this sound plausible to anyone else?

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