penis size and prostecomies

[James]

In my review of various literature on RRP and LAPRP etc I have come across several notes about penile shrinkage resulting as a known side effect of the procedure.   Can anyone here comment on that.  It is bad enough to think about having to overcome impotence - now you may have to overcome shrinage on top of that....it makes the odds of a normal life after seem smaller and smaller (no pun meant).

 

Any info that any one has on this is valued.

 

 

[Arnon Krongrad, MD]

"The reason it's called a "radical prostatectomy", is because it's life-changing surgery." Not true.

Let us remember that surgeons are anatomists and technicians. The actions they develop are named for anatomy and technique. Some common naming suffixes are:

Oscopy: An action that leads to looking. For example: Colonoscopy is a look into the colon.

Otomy: An action that leads to opening something. For example: Craniotomy is an opening of the cranium.

Ectomy: An action that removes something. For example: Splenectomy is the removal of the spleen.

We note that prostatectomy is a removal of the prostate. There are many forms of prostatectomy. On the least side is an incisional biopsy. There are various forms of partial prostatectomy: Retropubic, Suprapubic, Transurethral, Perineal. We attach the modifier radical to denote that the whole prostate is removed along with the seminal vesicles. Likewise, radical orchiectomy is anatomically and technically different from a simple orchiectomy. "Radical" is an anatomical modifier that has been applied by surgeons with no particular implication as to the illness being treated and/or the desired clinical outcome.

As indicated above, how one wishes to then feel or interpret the procedure under discussion is obviously highly subjective and personal. The emotional reaction is obviously highly dependent upon such dispositional variables as personality and learned behavior such as coping style. For example, many would not regard a circumcision as an extreme operation. Yet one man of whom I became aware did regard it so extremely that, in his dissatisfaction with the cosmetic result, he killed himself. This illustrates that no surgery -- be it generally perceived as minor or major or radical or whatever -- can be taken lightly. Equally, we should take every effort to understand the connotions and denotations of our words. "Radical" in this context denotes that the prostate and seminal vesicles are removed.

[Arnon Krongrad, MD]

It is clear that not all patients do equally. For example, two patients on this site have complained of post op pain whereas others have not. So the question to the next patient is this: What are my chances of having post-op pain if I also have this treatment? Anecdotes do not anwer this question.

We've discussed this elsewhere but since online forums and support groups tend to accumulate the dissatisfied, they also tend to amplify complaints. Such amplification is no substitute for clinical trials because to answer such simple questions as "what are my chances?" one needs both the numerator (the ones feeling pain) and the denominator (all the ones who had treatment). So as we acknowlege that specific members had pain, we also acknowledge that their individual experience sheds no particular light on the projected experience of the next patient.

[Arnon Krongrad, MD]

Patients can demand anything they like. It's a free country. However, there is no point in making unrealistic demands.

Why? Because the provision of surgery is not like the provision of cheese. Why not? Because our knowledge of diseases -- contrasted with our knowledge of cheese -- is limited. At best in most cases we have clinical trial data that permit a somewhat precise quantification of outcomes. For example, we know that in some cases (Gleason 8, PSA 10, small nodule) the likelihood of lifetime free of cure is 50%. Does this tell us that a specific and very demanding man who has paid a lot of money will not ever have cancer recurrence? No, it does not. We know that a 65 year old workaholic with some obesity, hypertension, and smoking history has a 50% chance of regaining erections by one year after surgery. So if he really, really demands erections does this guarantee he'll have them? What if he pays extra? No. Of course not. So no matter how much we may demand a certain medical outcome, in most cases absolutely no guarantee is possible. There are no guarantees. Even in the so-called "less complex operations." See circumcision example above.

Let us not conflate payment for service, the surgeon's best skills and efforts, and the elimination of risk. They are absolutely separable concepts and their correlation is far from perfect. So sure, if you want to make demands , go ahead. It's that there appears to be no value in this, whereas there is conversely the potential for unrealistic expectations, frustration, and needless and misdirected anger. This kind of unrealistic expectation and its consequent anger can in fact so corrode the patient-physician relationship as to actually drive the patient needlessly away from the very physician whose support and guidance he needs.

Doctors have an obligation to share their knowledge and help patients make informed decisions and set realistic expectations. Patients have an obligation to listen with open minds and try to let facts seep into their thinking.

[Chris]

James:

If you put up a thread under such a provocative title as Penis Size and Prostatectomy, then don't complain when the discusson gets lively. Lively discussion never harmed anybody. Incompetent doctors have.

Arnon:

Your attempts to de-radicalise the prostatectomy, and make the procedure sound like minor surgery, with little or no effect on the patient's life, won't wash. I will expand a little on why I used the term life-changing. The reason it's called a radical, life-changing operation, is because it removes the very organ inside the man's body which controls so many of his functions--the most important being sexual. So when that organ is taken away from him, you also take away the very reason of his existence--which is his unique ability to breed, to procreate, to create life on earth. If that isn't radical, I don't know what is. It also controls his ability to urinate normally.

Reading your recent posts, I see you have reverted to type again by using the term, "dissatisfied patients". Doesn't the patient have a right to expect a successful outcome from surgery, with his manhood left in tact? You speak as if it's the patient's fault if something goes wrong. Stop de-legitisiling patients. Stop diminishing what they have to say. Your continuing sniping at patients does you a disservice--and smacks of desperation. I thought doctors were taught in medical school to listen to patients.

Question: If you woke up after a radical prostatectomy for pain--a surgery that you didn't need to have--and you suddenly looked down between the bedsheets and found 10% of your penis missing, wouldn't you have something to say?

And there's the crux of the problem. If c.p. sufferers were competently treated by caring urologists (haha)--then they would never find themselves in such a desperate situation as to contemplate such a radical procedure. Let's be honest here: this website only exists because urologists refuse to do their jobs. So the problem isn't "dissatisfied patients", as you like to call them; the problem is "uncaring and incompetent urologists."

Only last week, a young man from this website contacted me. He was in a desperate state, and wanted somebodty to talk to. He was one of this website's "silent readers", as you call them. He explained that he had already seen 6 urologists, and not a single one of them wanted to treat him. Not one. Shocked? Not me. I've heard the story a million times before. Each of the six urologists told the man to go away, but in their own different way. "It's all in your head" one of them said. "You look ok to me", another said. Or the old favourite, "The pain will eventually pass."

So by some cruel twist of fate, the man--a mere 22 years of age, in the prime of his life--finds himself on this website, desperately seeking a "final" solution to his suffering. I won't tell you what he is contemplating if all else fails. What I will tell you is that my disgust for urologists increases by the hour.

[James]

Chris,
Not trying to offend anyone here - just searching out facts, opinions and expereinces.
Yours is of great value to me as you had this done.

The reason for this thread - is to educate myself and others as to this risk - which I just stumbled upon by dumb luck.

My last post was just a request to keep the tone such that we can continue the conversation - as we all know - extremes at either end will end up just shutting the conversation down.

I do hope you continue to improve.

[Arnon Krongrad, MD]

An acknowledgment that dissatisfaction exists is not a condemnation of dissatisfaction. Does that post above seem like it was written by someone who is satisfied?

Dissatisfaction originates in a mismatch between expectation and its fulfillment. This can happen when:

1) The expectation is not realistic
2) its fulfillment was not suitably delivered.

Medical knowledge and ability are finite. For example, medicine does not have the ability to cure diabetes, a life-long condition that medicine can sometimes, but not always, effectively manage. An expectation that a doctor will cure diabetes would be totally unrealistic. Any patient who has this expectation will become quickly dissatisfied and will possibly needlessly damage the relationship with the doctor whose help he needs.

Medicine knows very little about severe chronic prostatitis. It does not know what causes it. Medicine’s therapeutic “quiver” has some but not enough effective “arrows.” In some cases, but not all cases, severe chronic prostatitis has been cured. But why is one patient cured when another is not when their treatments were identical? Nobody knows the answer. Demanding an answer when none is possible is pointless at best.

Among the risks of any treatment for severe chronic prostatitis is the risk of treatment failure. The expectation that treatment will not carry this risk is not realistic. Any patient who carries the expectation that a treatment for severe chronic prostatitis – be it antibiotics or alpha blockers or massage or surgery or whatever – will be free of the risk of failure will become dissatisfied if his treatment fails.

Of course doctors, like teachers and parents and friends, are obligated to listen. A clarification that “radical” is a surgical semantic modifier that denotes that a specific anatomical action is taken is not a refutation that for some men, but certainly not all men, the experience of prostatectomy is extreme. Why insist that “radical” has been applied to “prostatectomy” for its clinical implications when this is not the case? Don't patients also carry an obligation to listen?

For some men the experience of the surgical removal of the prostate and seminal vesicles is a whole lot easier than living with severe chronic prostatitis. Listening to patients reveals that patients are not alike. Understanding the distinctions between the surgical use of the word “radical” and the layman’s use of the word “radical” – and they are absolutely different uses – opens the door to a finer ability to help the man who needs it. This means not permitting a man to develop unrealistic fears when he hears a word, such as "radical," that is meant to denote an anatomical action but not, in its other use, something that is extreme. Communicating the realities of what the word means by exemplifying it in operational terms requires listening to one patient and relaying it to the next. It does require that we understand that for some men the surgical experience is easy. Examples:

1) This morning I removed a catheter from a 71-year old who had a radical prostatectomy 9 days ago. He had left the hospital after an easy overnight stay that saw him up and about within a few hours. He took no analgesia over the last week. He has gone to the shopping mall with his wife and run around Miami since surgery. He lost no blood. He had prostatitis for 25 years but now, after years of dashed hopes and failed treatments, it is gone. Did he have a radical clinical experience? It is my opinion that he did not and that to characterize it that way and not explain that "radical" denotes that I also removed his seminal vesicles would be a total disservice to the man trying to understand what we're talking about.

2) This morning I received an email from a 45-year old who had a radical prostatectomy 7 days ago. He left the hospital after an overnight stay that saw him up and about within a few hours. He took a few Tylenols. He lost no blood. He asked if it was possible that he could be having an erection with the catheter still in [it is]. Did he have a radical clinical experience? It is my opinion that he did not.

There are things patients should demand. For example, they should demand that when they go for prostatectomy they do not come out with a kidney missing; this is perfectly reasonable and it is very realistic. This demand should be satisfied. But there are demands for which there is no basis in reality. The demand that a treatment for severe chronic prostatitis not be associated with risk, including risk of pain in the recovery room and risk of failure, is not realistic.

If patients want better chances of treatment success, then they should accept that the only path is better knowledge than what modern medicine now has. They should demand clinical trials.

[Chris]

James:

You didn't offend me. Far from it. I have great sympathy for you, and the poor treatment options open to you--if any.
In my own small way, I have been trying to rememdy the situation. I have some media contacts, and I'm trying to get a documentary made, exposing the disgusting and unprofessional attititude of urologists towards chronic prostastitis sufferers, and why most urologists refuse to treat your illness. I know so much on this subject, the pyschological reasons behind the urologists' contempt towards men with this disease, that I look forward to exposing what's happening--not only in your country, but around the world. The project is in its infancy. It's working title is, Medicine's Dirty Secret.

To the good doctor:

Your posts seem to get longer and longer; yet you seem to say less and less. This is not a personal assault, it's an observation. When I ask you a direct question, like I did in my previous post, you conveniently side-step answering it. The question I ask is specific to what this thread is all about. Instead, you spin some of the things in my post, to make me sound unreasonable and demanding. You say, "I demand an answer to a cure for chronic prostatitis."

Where do I say that? What I do say, is that men should demand treatment for their illness. But as I and thousands of other men will testify, this doesn't happen. What's more, you know it doesn't happen. If it did happen, this website wouldn't exist. So are you exploiting a niche in the market? Hmmm....

Your post continues on its merry way, with more medical cliches to entertain the reader. "Medical knowledge is finite," you tell us. It's like saying the world is round. "Patients should demand that when they have a prostatectomy, they shouldn't come back with a kidney missing." Yes, well, I would hope so. But adult men of working age don't need pointless platitudes shoved down their throats, they want effective treatment plans formulated by an intellgent, highly-motivated urologist who cares about his patient's well-being, and wants to bring some relief to their suffering.

Is this asking too much? Is this too demanding?

[Chris]

PS: I think your campaign to de-radicalise radical prostatectomy surgery, is very clever.

[imnotcrazy]

chris i couldnt have said that any better. if you need help with your project let me know. i would love to expose a few creeps that are so called urologist . i have a nice scar from one. and 20 others that only cared about the money. could care less weather i was healed or not. bob has some stories as well .bob and myself have traveled together to get treated like crap. the famous urologists in ohio and chicago were the worst. and like you said they all twisted their words so we never got a straight answer. i think doctors should NOT GET PAID until a good result has been made. that would change some things for sure . keep me posted i can always pm you my phone #... good luck and GOD BLESS

[Arnon Krongrad, MD]

They want effective treatment plans formulated by an intellgent, highly-motivated urologist who cares about his patient's well-being, and wants to bring some relief to their suffering. Is this asking too much? Is this too demanding?

Of course patients should ask for effective treatment. But what do you do when medical knowledge does not identify such an option? One idea is to do research aimed at identifying effective treatments. The only way to identify effectiveness is through clinical trials. Given current limitations, it is not helpful for patients to demand what medicine cannot deliver: A treatment that is free of risk. I cannot deliver a treatment free of risk and I do not know anyone who can.

I think your campaign to de-radicalise radical prostatectomy surgery is very clever.

A driving imperative of medical care is to first do not harm. In other words, it has always been the doctor's ambition to reduce the pain and the suffering associated with the treatments he can offer.

At its inception over 100 years ago, the act of removing the prostate and seminal vesicles was associated with heavy bleeding, large incisions, prolonged and severe pain, and uniform incontinence and impotence. Research showed ways to refine the operation so as to markedly reduce the risk of these unwanted effects. In my hands, and this is not an assertion about anybody else's hands, LRP is almost always associated with one night in hospital, two Tylenols in the first 24 hours, and no transfusions; incontinence and impotence vary as a function of patient characteristics.

We want to "de-radicalise" all forms of surgery. It's not about being clever. It's about being good doctors.

[Arnon Krongrad, MD]

Chris,

Why do you think "most urologists refuse to treat your illness?"
What do you believe are "the pyschological reasons?"

Thanks.

[imnotcrazy]

wow that was a low blow. go figure.