A patient’s story: Why one man chose robotic-assisted laparoscopic prostatectomy

In the summer of 2005, Steve Henley was a successful 64-year-old financial services executive with a steady girlfriend. He was in great shape, often rowing for miles on the river. Receiving a diagnosis of prostate cancer came as a shock. [Editor’s note: To protect his privacy, the patient’s name has been changed. All medical details are as reported.]

But Henley took his time before making a treatment decision. Diagnosed in September, he did not reach a decision until nearly five months later — and that was after shuttling between two major cities and consulting with a total of seven doctors and multiple friends. Two surgeons recommended open prostatectomy (done with an abdominal incision), two radiation oncologists recommended implantation of radioactive seeds, two medical oncologists advocated watchful waiting, and one surgeon suggested robotic-assisted laparoscopy — the option Henley ultimately chose.

Could you describe the circumstances leading up to your diagnosis of prostate cancer?

In July, I went in for my annual physical. I’d been rowing on the river for 15 miles and was pretty dehydrated. It was shortly after I finished my row that I went for my checkup. My internist did a digital rectal exam (DRE), and then I had a PSA.

The previous year, my PSA had been 3.5. But this time it came back at 6.0. The percentage jump alarmed my internist. So he suggested that rather than wait a couple of months to do another PSA test, that we do a follow-up test in two weeks. The second test came back at 4.4.

My internist sent all the information to the urology department. They thought the jump was significant and suggested that I have a biopsy.

About a month prior to the biopsy, I met with a nurse to go over the procedure. She told me, first of all, that I shouldn’t have had a DRE before the PSA, and that second, all of that physical activity and dehydration would have affected my results. I also mentioned that I’d had sex in the two days before the PSA, and she said that before a PSA, you should abstain from sex for a couple of days, and that any one of those three things could have made the PSA jump the way it did. But regardless of that, they still felt I should have the biopsy.

So I had the biopsy in September. Of the 12 samples, 2 contained tissue that was 20% cancer.

At that point, I started seeing doctors for consultations. I had another PSA about a month later, during one of the consults, and that came back at 3.6. So the irony is, if I had somehow missed the earlier PSA tests, and just scheduled one in October, I never would have been diagnosed with cancer.

And no one felt anything during a physical examination?

No, and during all these follow-up visits, I certainly saw a lot of doctors. And they never felt any nodule or hardening during the DRE.

Do you remember what you were told about the Gleason score, or other characteristics of the cancer after the biopsy?

The Gleason was 3+3. Everyone that I talked with told me I had early-stage cancer and I had plenty of time to thoroughly investigate what I wanted to do.

Can you share with us some of your emotions and thoughts when you got the diagnosis?

They called me in and told me they’d discovered cancer. And I had a first meeting with one of the urologists, who explained all of the different ways to deal with the cancer. You know, I’m a Vietnam vet. I was a Marine helicopter pilot. And when I came back from Vietnam, I realized I’d developed an attitude where I don’t worry about things. And that pervaded my reaction to cancer. I knew that I had to do my homework and decide what I wanted to do for myself, but it isn’t something that put me into a tailspin.

Who did you talk to, as you made your decision?

I talked with a lot of people, in and out of the medical profession. I talked with surgeons who were leaders, as far as I could tell, in open surgery [prostatectomy], the leading seed-implant radiation oncologists, and then medical oncologists. But I also talked with men, like former fraternity brothers at college, who I knew had prostate cancer, and started picking their brains. I also went online. The state where I live maintains a Web site listing doctors and the number of operations they’ve performed, and so I was able to determine who had done the most surgeries.

And you know, if you look at that list, it can scare the hell out of you. It made me realize that there are people who’ve had prostate surgery performed by a surgeon who does maybe one, two, or three of those operations a year. And you wonder, how could anybody make that decision? I know I wouldn’t want someone who’s done only one operation in a year to do me!

What did the doctors advise?

I first met with two doctors who did open surgery. Because my cancer was early stage, I never had the concern that maybe it was going to spread.

A bigger concern, to me, was retaining my potency. And neither one of the surgeons was able to give me any reassurance that they could preserve one of the neurovascular bundles, which would allow me to remain potent [see “Neurovascular bundles,” below]. Both of them said, “Your cancer’s in the apex,” and they showed me how the nerve bundles came down right next to the apex.

So they weren’t going to know until they got in there if they were going to be able to save the nerves. They were fairly confident they could save the other side. So that would give me at least a 33% chance that I could retain my potency.

Neurovascular bundles

These two portions of the prostate gland contain the nerves and blood vessels necessary for the maintenance of erectile functioning and potency.

So the surgeons weren’t sure that they could save the neurovascular bundle, at least on one side.

Right, and if they couldn’t save the neurovascular bundle on the one side, there would be only a 33% chance that I’d be able to have an erection after the operation. So I decided to seek some other opinions and look at other treatment options.

I met with two different radiation oncologists and two medical oncologists. And both of the medical oncologists thought I should consider active surveillance. For a while, I gave that serious thought. And I guess the bottom line was, I just wanted to have it taken care of. I didn’t want something hanging over me as time went on.

Why were the oncologists recommending active surveillance? You’ve mentioned that the second oncologist you saw really made a strong argument for it.

That’s right. First of all, he was concerned about what my quality of life would be like after surgery. I had shared with him my concern about retaining my potency.

What kind of statistics did he provide?

He said that some of the statistics out there are really bogus, that some of the doctors are not asking the hard questions. He cited the example of one well-known doctor, who asks his patients after surgery whether they were pleased with the surgery. And of course, if you think you don’t have cancer anymore, you’re going to say, “Sure, I’m pleased with my surgery.” But this doctor wouldn’t ask specific questions, like “Are you pleased with your potency?” or “Do you have any incontinence?” and so on. The doctor I was seeing had some problems with that, because he’d gone back to the same patients, and asked those questions, and came up with pretty grim results. So my doctor thought the chances of recovery after open surgery were a lot less optimistic than some of the statistics might suggest. [Note: Studies that use questionnaires to ask patients about specific problems tend to find a higher incidence of particular side effects than other sampling methods. See, for example, “The Prostate Cancer Outcomes Study,” below.]

The Prostate Cancer Outcomes Study

This study involved 1,291 men ages 39–79 who filled out questionnaires asking about specific changes in urinary and sexual functioning following radical prostatectomy. When questioned 18 months or longer after treatment, 8.4% of men reported being incontinent, and 59.9% reported being impotent. These percentages indicate incontinence and impotence may be more common than other studies, which relied on patients volunteering specific information, have found.

Source: Stanford JL, Feng Z, Hamilton AS, et al. Urinary and Sexual Function after Radical Prostatectomy for Clinically Localized Prostate Cancer: The Prostate Cancer Outcomes Study. Journal of the American Medical Association 2000;283:354-60. PMID: 10647798.

And what did the radiation oncologists advise?

I was really impressed with both men. They talked about the implantation of radioactive seeds [brachytherapy]. I said to one of them, “You know, I’m getting all this information and I’m in overload here. So if you were in my position, what would you do?”

And he said, “Well, I’m 20 years younger than you. So if I had prostate cancer, I would have surgery. Because I’m most concerned about living a long life.”

And I said to myself, “Look, pal, I want to live a long life too!”

Did he provide evidence that surgery would make an individual patient live longer?

No, he didn’t. The issue is that they don’t have enough statistics on the seed implants to know whether they are knocking cancer totally out of the system. But what persuaded me was that here was this seed doctor saying, “If it were me, I’d have surgery.” That immediately eliminated seeds for me.

Did either of the radiation oncologists mention external beam radiation?

Both of them said that was something that could be used, but they focused on their own area of expertise, which was brachytherapy.

So then what happened?

Well by this point it was December, and I was less than happy with the information I was getting. I knew I wasn’t going to have brachytherapy. So I made an appointment for surgery in March. Because even though doctors were telling me I had a long time to think about all the options, I was really feeling like it was time to make a decision, because I’d been looking at options for three months.

In the meantime, two of my fraternity brothers were diagnosed with prostate cancer. One had open surgery in another city. I talked with him and his wife by phone, on speakerphone so that I could talk to both of them. And they were very candid with me about their life and his recovery from cancer surgery. He’d had surgery in mid-July, and I talked with them in early October. He told me that by then his incontinence was under control, but even though he was taking Viagra on a daily basis, he still wasn’t getting any sign of an erection. And it had been three months.

Have you talked with him since then? Has there been any improvement?

I did talk to him right before I had surgery. By then it had been eight months, and he still wasn’t able to have an erection.

My other fraternity brother found out that he had prostate cancer a week after I did. And we were sort of holding hands and exchanging notes while we tried to make a decision. He’d read a book by a well-known surgeon, and decided to make an appointment with him to discuss open surgery. But this book also mentioned another doctor, in the same hospital, who did laparoscopic surgery. The meeting with the first surgeon went well. But as my fraternity brother and his wife were leaving the hospital, he said, “I’m just going to call this guy who does laparoscopy and ask if he can see me.” Fortunately the second doctor was there and actually had time to see him.

Eventually, my friend decided to have laparoscopic surgery. He had the surgery in January. His recovery time was really quick. So he urged me to consider it. And I did.

But my girlfriend had been after me ever since I was diagnosed to look at robotic surgery because her investment advisor had recommended that she invest some money in the company that makes one of the robotic devices. At first I said, “Yeah, okay.” But I didn’t take it seriously.

One of her friends knew that I had cancer and called her up to say, “Did you or Steve see the article on robotic surgery?” The article had just run in a magazine. We hadn’t seen it, so we looked it up, and the article included an interview with a patient who had undergone robotic surgery. He talked about how easy it was, and how quickly he recovered, and was able to do all of the activities he wanted to do.

The article mentioned two doctors in another city. So I thought, “As part of my investigative research, I’ve got to go talk with both of these guys.” So I made an appointment to see them in February. My girlfriend went with me. But I was so impressed with the first surgeon that I canceled the meeting with the second.

What impressed you?

Well, first of all, his background. He was originally trained as a surgeon who did open prostatectomies. But then he became intrigued with laparoscopic surgery, so he went to France to learn the technique, and then started using it in his own practice. When robotic laparoscopic surgery came out, he also took the time to learn it [see Figure 1]. So I saw someone who was on the cutting edge, who had taken the time to ensure he could be the best surgeon he could be. It just gave me a lot of confidence.

One of the questions I asked him about the surgery was, “I’ll accept that you’re confident about running the robot. But what if the robot breaks down halfway through the surgery?”

He said, “I’ll open you up and finish.”

Figure 1. Operating by remote control

Operating by remote control

To perform a robotic-assisted laparoscopic prostatectomy, the surgeon sits at a console several feet away from the operating table and manipulates robotic arms, which are fitted with tiny cameras and surgical instruments, to locate and remove the diseased prostate gland. The console contains two full-color computer screens that provide a magnified, three-dimensional view of the prostate and surrounding tissues. The surgeon guides the robotic arms by manipulating manual controls while watching the screens.

Proponents of this approach claim that robotic-assisted laparoscopic prostatectomy offers greater magnification and surgical precision than the alternatives, but thus far the evidence indicates that success rates and chances of complications are about the same as for traditional laparoscopic prostatectomy and radical prostatectomy (so-called “open” surgery).

That’s an important consideration, because many people who are trained to do laparoscopic surgery haven’t been trained to do open surgery. Yet sometimes they have to switch gears in the middle of the operation and perform an open prostatectomy [see Figure 2].

That’s exactly what he said. But even more important, in my mind, was his answer to another question. I said to him, “You’ve been trained in all three disciplines, so why do you think robotic surgery is the best choice for me?”

And he said, “The clarity of vision, the magnification, offered by robotic surgery is about 12 times greater than using your eyesight during open surgery. So when I’m putting a stitch in, it’s so clear, it improves the precision.”

He even said that with this technique, he can see the color differentiation, where the cancer begins and ends. And he said you just can’t do that during open surgery. The other thing he mentioned is that there’s virtually no blood loss. And the recovery time is significantly better.

Figure 2. Practice makes perfect

Practice makes perfect

The likelihood that a surgeon performing laparoscopic prostatectomy will have to switch to open abdominal surgery in order to complete the operation goes down significantly with practice, measured in the number of operations performed.

Source: Journal of Urology, July 2005.

Did he mention anything about the visualization of the neurovascular bundles?

Yes, he felt pretty confident that with the increased magnification, he would be able to move them aside, and remove the prostate with no problem. He said, “If the cancer has spread into the seminal vesicles, then obviously we have to deal with that. And we won’t know until the operation.” But he seemed pretty confident that after the operation I’d be in good shape.

Did you consider having robotic surgery closer to home?

You know, I did look into it. But I did some research, and it looked like there weren’t many people doing this at the time in the city where I live, and they didn’t have a lot of experience. One surgeon had done 50 of these operations. The doctor I met with had done about 400. So I’m thinking, “Okay, 50 versus 400. I think I’ll go with the guy who’s done 400.”

What kind of logistics were necessary, with you being in one city and the operation being done in another?

There were some logistical challenges. I ended up doing the preoperative testing at a hospital near my home, and then had it sent to the surgeon in the other city. He was willing to accept their medical tests.

During the operation, they inserted a catheter, which is normal. And he was also comfortable with me having the catheter removed near my home, but the hospital up here didn’t want to get involved, because it wasn’t their operation. So I ended up traveling to the other city to have the catheter removed.

How long did you have it in place?

Five days.

And tell us a little more about the operation, and how you felt afterward.

My girlfriend and I stayed in the hospital the night before. They actually have some rooms you can rent. I thought I was being operated on at 10 a.m., and I had to be in the prep room at 8 a.m. But there was a miscommunication, and I didn’t get into the operating room until the afternoon. So I spent all day in the waiting room, which was annoying. But they operated on me at 4:30 p.m. They were finished by 6 p.m. I spent the night in the hospital, and at 10:30 the next morning, I walked out of the hospital.

How did you feel?

I felt great. We took a cab to the train station. We took the train home. We then caught a cab to my condo. I walked up four flights of stairs as briskly as I’d ever walked up the stairs. And I felt terrific.

Any postoperative complications?

No.

And what did the final pathology show?

They felt they had a clean margin, that they got all the cancer out.

Did they sample the lymph nodes?

They did, and the lymph nodes were clean. No cancer.

So if you had to offer advice to people who may be trying to weigh all the options, what would you tell them?

I think it’s important that you reach a decision that you’re comfortable with, and it took me a long time to get to that point where I was comfortable. By the time I got into the operation, I’d reached the point where I thought, “Okay, whatever happens, happens.” I believe I made the right choice for me. And I can live with whatever happens. And I think everybody needs to get to that point.

Of course, I had the luxury of time. I didn’t have the pressure of an aggressive cancer. So I felt confident that my cancer would be cured. My larger concern was my potency.

How has your recovery gone?

My potency returned a month after the operation. The incontinence has been a problem. I talked with my doctor a few weeks ago, and he suggested a biofeedback session at a hospital near my home. He said that I may not be doing the Kegel exercises correctly. But he said, “I promise you that your incontinence will be resolved. You’ve just got to be a little patient.” [Note: A Kegel exercise is an exercise for the pelvic floor muscles that is used to prevent and treat incontinence.]

What was the biofeedback session like?

I’ve only had one. And I have another session in a couple of weeks. Basically they put a sensor on my stomach, and one in my anus. And they hook the sensors up to a computer. I then did a Kegel exercise. And the graph showed that I wasn’t using my abdominal muscles, so I was doing the exercises correctly. But my sphincter muscle isn’t strong enough to hold the contractions. So the nurse gave me a set of exercises about how to do the Kegels better.

Has the incontinence been getting better?

For several months now, I don’t need a pad anymore to get through the night. You know, it’s interesting because I row, and I don’t have a problem. If I’m sitting at my desk, I don’t have a problem. My biggest problem is if I’m lying on a couch, watching television. And recently I went to an outdoor production of one of Shakespeare’s plays, held in a public park. I was sitting on a blanket. And I was a mess. So it has something to do with the position I’m in.

I know you’re happy with your potency. Did you do anything in particular to speed your recovery?

The surgeon had advised me that the more sexual activity that someone has had leading up to surgery, the better their chances of recovery on the other side. If someone is sexually inactive, that makes it more difficult. I’d heard that from other doctors as well.

Yes, that’s true. We tell that to patients all the time.

[Laughing] So before the operation, I probably focused more on having sexual activity than doing my Kegel exercises.

Have you had a postoperative PSA?

I did. It was less than 0.1. And the digital exam showed nothing.

So knowing what you do now, would you still make the same treatment choice?

Without question. I’m glad this is behind me.

Any parting thoughts?

There’s a lot of information out there. And it’s easy to get overloaded. The more information I got, the less comfortable I felt with my decision — until I found robotic surgery.

It’s not an easy decision for anyone to make. But, I think, the more people you talk with and the more familiar you can get with the issues, the easier it is to make a decision that’s right for you. It’s a mistake to decide on one course of action without knowing what the alternatives are.

Originally published January 2007; Last reviewed April 20, 2011

Comments
37
peter cain

I had robotic prosectomy 22 days ago I get quite tired and pee a lot in my pants when I am walking around the house or walking outside ,it must be difficult to return to work as such .I do my kagel which can be painful,also I produce a lot of urine in the night .I have been told things will improve ,

Antonio

I am also on my 2nd week of post op robotic surgery. I am constantly peeing almost nonstop when walking around and doing daily activities. It has been very uncomfortable and frustrating. I do my kegels but still not seeing any significant improvements. Do u now have or does anyone have any suggestions to improve incontinence recovery time? Antonio

Bob Marino

Had my surgery almost 2 years ago. I’m 66. Only time I leak is when I sneeze or have a deep cough. Use a pump to get a full erection. Orgasms are different, but still enjoy sex.

Richard LaBarca

I’m 65 and on biopsy 4 samples showed perineural invasion. My concern is that the nerves will not be spared. Are the chances higher of having a non-nerve sparing robotic operation when PNI is apparent?

neal harrison

Bob Marino: I too find orgasms differently if I am actually having one. How is yours different? robotic surgery 18 months ago

Renato Pereira

I have had robot prostatectomy on 10/15/15 with one of the best surgeons available. As soon as my catheter was removed I was advised to use pads. I ‘ve used one between the clinic and my hotel in NYC (Im brazilian). Not even one more. Im completely dry. Im 56 and in pretty good shape. My biggest concern before the surgery was about sexual potency outcome. My doctor told me to start taking claims 48h after catheter removal.Well, 24 hours before that I was playing around and having sex with my wife ( I was oriented not to do so, but I couldn’t stop). Of course it wasn’t a 100% erection. I would say it was like 75%. Now, 3 days latter, I can say that Im having 85-90% erctions WITHOUT taking any cialiss, as I never used to do before the procedure. I feel very very happy. And Im taking the time to write this down to share with all man searching for information that incontinency and impotency is not necessarily an outcome of RP.

Mike D

I’m a 47 year old African American with a Gleason of 3+3. I am scheduled for a robotic removal on Monday the 7th. I was diagnosed on 8/19/15. I am nervous about potency as I am a young guy with a younger wife. When some of you say the orgasm is different is that in intensity or length of sensation?

robert

Hey Mike my name is Robert I’m 45 facing the same decisions as u. Could u please email me so I possibly have the chance to talk to u any advice would very appreciated please!!!

Kirk Johnson

I had robotic surgery removal of my prostate July 21st 2016. Leakage has been a slow but steady Improvement. I don’t wear pads or diapers anymore and have occasional drips especially when I’m physically working. I am taking half a Cialis pill a day with absolutely 0 results.

Marty

I had surgery a week ago taking my catheter out tomorrow. Best thing I heard is you can have sex at the bottom of a pine box. Fortunately at 63 I’ve had a very high sex life. If it returns awesome if not I’m alive

Rick Parent

I am 62 and trying to make my decision on robotic or barachtherapy I am really leaning towards the surgery, I am young in good shape and have absolutely no issues with erections my wife an I are sexually active. I am just worried about afterwards. I was a Gleason 7 a 4-3 . My surgeon says he can save the nerves on the right side but not sure about the left side being the tumour is on the left side of the prostate. What are your thoughts

A

I had the robotic surgery about a month ago. Last night I had my first attempt at sexual functions. Before surgery I was able to obtain a degree of erection without pills or pumps but since the surgery there is maybe 10-20% of an erection, even with the blue pills.

I’ve still maintained the sexual desire/drive but last night’s experiment was quite depressing. As things built up and what I thought I was about to experience what I considered my first non-prostate orgasm it was extremely non-climatic (no pun intended). No orgasm at all. It was just like someone turned off a switch in me at just the peak moment.

I hope this is temporary as I have totally lost my sensations of having an orgasm.

john

i had surgery october of 2011. the first i had sex was 2 weeks after my surgery it was a strange at first but i have not had one problem since my surgery. No pills no pump it has been great and i am 72 now.

Metin

I am now 70 years old and good shape good body. I used to be a swimmer.Sorry my English is not good. I had a operation prostate 2005 Robotic Prostactamy. After that later I start takin Cialis and Viagra. it help me little bet after year so later then that it did now work well. So no I am thinking having Penile implant.I did talk with Doctor in NY. but I am still not to sure about that. Is there a any possibility it wont work or harm the penis or some thing else. I am not good with injection.When doctor examed me he give one injection for mesurment. It did get harder but was not natural feelings. Now I do not know what I should do. Any suggestion I would appreciate very much. What is the best thing for me. I hear Pump but Doctor told me no. He suggested penile implant. Thank you.

Mark mathes

I am post op 6 months. I had the robotic prostectomey procedure, which went well for the most part.
However, after a cluster of lyump nodes were removed……..one did show a very small amount
Of cancer cells. A few days after the operation, I started having severe pain in my left groin.
Some swelling then appeared………and the pain went to 10 plus. I thought I would go out of my mind, and after 2 weeks of visits to and from the hospital, no one knew what it was. Finally, one
Brilliant young Doctor asked if I had an MRI with contrast…………well no, had not, he ordered one immediately, and they found 300 ml of fluid in a remaining lyump node….which I am told is common.
This put so much pressure on my femeral artery, that it cut off blood supply, and caused a blood
Clot 12 inches long in my left leg. Wow……the pain was like nothing I had ever felt in my 65 years.
Today, after putting me on an exsparerental drug ( Eduxaban) my leg is fine, I have very
Little continence issue…..maybe a cough, or sudden movement………..BUT beware folks,
No erection at all! Nothing, not with pills, not with injection……..nothing. Have managed to have an
Organism soft…..yes it can be done, but the exspearence is not the same. This has changed me
Dramatically………..I am trying to adjust, but it cause’s me constant feelings of loss like I never
Excepted. They do not dwell on this, and pass over the subject quickly during your investagative
Inquiries. My take away was this….. It was an elegant approach to a barbaric act……..think it through very carefully.

Robert

My Robotic surgery was a year ago now. I sleep well with no pads at all. I don;t need pads but I will leak if I sneeze suddenly without being prepared. I have no erections but am constantly bothered by powerful urges to masturbate I feel flush all over when this happens which seems to be more often. I feel ugly after giving in to these urges but I can’t seem to make them go away. Once in a great while I get a little firmness and I wonder if nerves could grow back that were removed. I wish I didn’t have any sexual arousal at all as I think its sinful but its like something more chemical going on in me much more than even before surgery Strange stuff Has anyone else had this going on? Robert

ROBERT

yOU FAILED TO MENTION YOUR AGE OR MAYBE I MISSED THAT. I HAVE THE OPPOSITE PROBLEM I AM CONSTANTLY BEING TEMPTED TO MASTURBATE THE FEELINGS TO DO THIS ARE POWERFUL AND I DONT SEEM TO BE ABLE TO TURN THEM OFF EVEN WITH PRAYER, I HATE DOING THIS BUT I GET FLUSH AND SOMETIMES SICK TO MY STOMACH IF I DON’T GIVE IN..ALSO I AM WELL OVER 60 YEARS OLD. THE INTENSIFY IS BETTER IF YOU HAVE A LITTLE FLUID IN YOUR BLADDER TRY TO TALK ABOUT IT TO A GOOD FRIEND OR GET ANOTHER SUPPORT GROUP I FIND THE FORUMS ON THE INTERNET ARE PRETTY HELPFUL GOOD LUCK

Dan Alwood

I had a robotic prostatectomy in December 2014, a that age of 53. Maintaining potency was of paramount importance to me. Unfortunately, 19 months later, I still have 0% potency. Cialis did nothing for me, and the pills are expensive. I could get an erection with injections, but the erections were painful, and lasted for very several hours. I even had to go to the hospital twice to relieve them before priapism set in. I gave up on both Cialis and injections.

I now live in a sexless marriage (admittedly, there are other relationship issues). I’m 55 now. I wasn’t ready to give up sex yet. One good thing is I have 100% continence, and never have had to wear a pad. Bottom line is do not have a prostatectomy unless you are ready to give up potency. Maybe you’ll get it back, but the odds are high against it. If I had to do it over again, I’d take my chances with prostate cancer.

Peter

I am due to have robotic surgery and am already aware that no nerve bundles can be saved. Can anyone tell me their experiences of being able to have erectile function via use pump or injection/viagra post op?

Mirko Kljajic

MK
Had robotic surgery to remove prostate on November 2nd. Had extremely painful 7 days post op.
Catheter removed on November 10th. Ever since catheter was removed, I am leaking constantly without any urinary control. I already regretted having surgery. I am 51 and my Gleason was 7 (4+3). SE from surgery are extremee and I do not know if I will ever overcome them.
Surgery was the biggest mistake in my life.

Neil

I will be most grateful if could please tell me the name of the surgeon that performed your operation that you wrote the following about?

“Well, first of all, his background. He was originally trained as a surgeon who did open prostatectomies. But then he became intrigued with laparoscopic surgery, so he went to France to learn the technique, and then started using it in his own practice. When robotic laparoscopic surgery came out, he also took the time to learn it [see Figure 1]. So I saw someone who was on the cutting edge, who had taken the time to ensure he could be the best surgeon he could be. It just gave me a lot of confidence.”

William Bailen

Had the Davinci procedure 8/1/2012 and have had zero erections to date… The main issue is scar tissue build up at the bladder head. Urine flow is but a trickle with incomplete bladder emptying. Leaking is a constant issue and need to urinate q 2hr around-the-clock. Post-op had an outpatient SX procedure to open the ureter. However the fix only lasted 3 months and subsequent cystoscope ramrod procedures(x3) to stretch the opening lasted 3 months. Is there a new/different procedure? Also my urologist encouraged me to self administer a catheter daily after each procedure. I was successful in 2 of 20 attempts!

JJ

Men beware!

Read the hard facts about prostate cancer testing and treatment what no one will tell you about, even after it’s too late. This is information all men over 40 should have. Also anyone concerned about cancer in general should read this warning.

Prostate cancer patients are often elderly, over treated and exploited for profits, AKA elderly abuse.

The overtreatment of prostate cancer for profit must stop!

The treatment and well documented overtreatment of prostate cancer often results in devastating and unnecessary side effects and sometimes death.

Per some studies:
1 man in 6 will be diagnosed with prostate cancer in his life.
About 233,000 new cases per year of prostate cancer.
About 1 Million blind biopsy’s performed per year.
6.9% hospitalization within 30 days from a biopsy complication.
About 1.3 to 3.5 deaths per 1,000 from prostate blind biopsies.
.2% deaths as a result of prostate cancer surgery.
60% had a prescription filled for an infection after a Biopsy.
Medical mistakes are the third cause of deaths in the USA.
Prostate cancer patients are at an increased risk for depression, suicide, heart attacks and accidental death.

Prostate cancer patients are often elderly and exploited for profit, the treatments offered almost always have horrible side effects, and newer treatment options are ether unavailable or not offered to patients or available outside the USA. Also men are often over treated for profit. Prostate cancer is often slow growing and of low risk and can just be monitored. Often no treatment is the best treatment.

If a surgeon is financially responsible for a building lease or a large staff or an oncologist is also responsible for a lease on 5 million dollars of radiation treatment equipment, do you think they would be more or less upfront about the benefits and hazards of treatment? Do you think the profit margin would compromise some doctor’s ethics?

The risks percentages for side effects from a blind biopsy and Prostate cancer treatments are usually understated to patients and some side effects are not disclosed at all.

Men with a high PSA tests result are usually sent to an urologist for a blind biopsy. Men should be told about other options: Percent free PSA test, PCA3 urine test or a MRI test before receiving a blind biopsy. These tests can often eliminate the need for a more risky and invasive blind biopsy. Insertion of 12 to 18 large holes through the rectum into a gland the size of a walnut, a blind Biopsy can result in prostate infections, a risk of permanent or temporary Erectile Dysfunction, urinary problems and sometimes even death from sepsis (About 1.3 to 3.5 deaths per 1,000 from Blind biopsies). A blind biopsy can also increase your PSA reading for weeks or months.

Prostate cancer patients are often sent for a bone scan. A bone scan has about a 13% chance of having a false positive and only 3 men in 1,000 have bone cancer who have a bone scan. Bone scans are usually unnecessary in lower risk prostate cancer patients.

Low risk Cancer patients or patients with advanced age are often sent for aggressive treatment by some doctors when monitoring is usually a better option. An extreme example of overtreatment is one SBRT (a 5 day radiation treatment) clinical trial. Prostate cancer patients where intentionally treaded with a huge dose (50 Gy) of radiation resulting in disastrous long term side effect for some of these men. A large percentage of prostate cancer patients in this study had low risk cancer.

Clinical trials may or may not be hazardous to patients. The goal of a clinical trial is to gather information; the intent is not necessarily to help or cure patients. In a clinical trial, if someone is given a treatment that will harm them (as in the above example) or given a placebo in place of treatment or needed treatment is withheld, the patient may be deceived or harmed. Investigate before you participate in a clinical trial.

Prostate cancer patients are asked to fill out a series of EPIC questioners and other questioners. The EPIC questioners ask intimate details about patient’s sex life, urinary and bowl function. By a prostate cancer patient completing a EPIC questioner, he may be able to have his doctor, nurse or other office workers track his progress or decline. By refusing to fill out these questioners he can help insure his privacy and insure he do not unknowingly become part of a study or clinical trial or other collective survey. He may be told these questioners and records are confidential; this may not be completely true. Most of the time a patient has no idea who has access to the records or why the records are being looked at. Who has access to medical records? Records are vulnerable. Probably everyone that works in a medical office or building. This may include/however not limited to non-medical employees, office workers, bookkeepers, janitors, insurance companies, temporary high school or collage interns, etc.. Often records are placed on a health information exchange (HIE), dozens or sometimes even hundreds of people may possibly have access to the records. This may include other medical facilities, programmers, hackers, researchers, drug companies, etc. Records may be packaged with other patient records and offered for sale on the internet, this sometimes does happen. If a doctor or a patient or insurance company is involved in a criminal or civil case, medical records may become public court or law enforcement records. All patients should get a copy and read any confidentiality disclosures statements (HIPAA statements). Patients can also become the victims of medical Identity theft. All patients should avoid supplying unnecessary information whenever possible, supply relevant information only.

The most common treatment options for men with prostate cancer are radiation, Brachytherapy, surgery, cryotherapy and hormones (ADT). Sometimes chemotherapy, immunotherapy and castration (Orchiectomy) are used. A combination of treatments is often used. All of these treatments have long term or short term side effects. Often men are not told about all of the true risks and side effects or they are downplayed for both a blind biopsy and treatments.

Brachytherapy is radiation seed implant. This treatment procedure implants 50 to 100 radioactive seeds in the prostate, commonly resulting in urinary problems. The patient will literally become radioactive for about a year. The patient can set off radiation alarm and metal detectors at airport. His semen will become radioactive. The patient will become like a walking Chernobyl, having radioactive scrap metal in his crotch. He will also be required to carry a card in his wallet stating he is radioactive. The videos of this procedure seem disturbing and bizarre. However Brachytherapy seems to have less sexual side effects than some of the other treatments available.

Men are sometimes prescribed hormone therapy (ADT therapy), AKA chemical castration as an additional or only treatment. Hormone therapy is often very expensive (profitable for doctors) and has horrible, strange and devastating side effects. Hormone (ADT) therapy is sometimes over prescribed for profit. This treatment has so many temporary and permanent mind and body altering side effects that doctors will not inform patients about all of them, one of them being feminization. Men are sometimes actually castrated (Orchiectomy) as a cancer treatment to reduce testosterone.

Nerve sparing Robotic-assisted daVinci Surgery is touted as being a better treatment and having fewer side effects, this is usually an exaggeration. The nerves can not always be spared. Robotic surgery can result in a faster initial recovery. However the long term risk of Sexual dysfunction, incontinence, fatigue, etc. is about the same as conventional surgery. Surgery almost always results in Sexual dysfunction and commonly results in incontinence and other side effects. Patients undergoing surgery are at a small risk of developing post traumatic stress disorder (PTSD). 25% chance of long term or permanent fatigue. Also .2% risk of deaths as a result of prostate cancer surgery or medical mistakes.

Medical mistakes are the third cause of deaths in the USA. Medical mistakes cause more deaths then suicide, firearms and motor vehicle accidents combined. If you are having surgery, Brachytherapy, a biopsy or a procedure take precautions, if possible have someone qualified or knowledgeable monitor you and your medications, etc..

A blind biopsy or treatments are often worse then the disease: Resulting in Chronic/permanent fatigue, incontinence, depression and sexual dysfunction. Hormone therapy has an extensive list of side effects that can be devastating for men. Biopsies and treatment are degrading, stressful and often unnecessary.

The risk of long term chronic and permanent fatigue is almost always understated if mentioned at all to patients. Depending on your treatment; your risk of long term or permanent fatigue is about 25% to 60%. Radiation with Hormone therapy has a high risk of fatigue. Long term fatigue also increases the risk of clinical depression and suicide.

In my opinion: Castration, hormone therapy (chemical castration), Brachytherapy (radiation seed implant), surgery and blind biopsies are often psychically and emotionally brutal, traumatic and disturbing. These types of treatments (Frankenstein stile medicine) are primitive and almost beyond belief in today’s world of advanced technology. Newer treatments like Hyperthermia, Boron Neutron capture therapy, Focal Ablation and orphan drugs should be investigated. Biopsies should be limited to selective image guided samples only, no blind biopsies should be performed.

Advances in prostate cancer treatment mostly consisting of newer more accurate radiation treatments, robotic surgery and new drugs. These advances sound like greater strides have been made. However most of these approved advances are of limited benefit to prostate cancer patients and still have about the same amount of side effects. Compared to other technologies, computers, communications, electronics, aviation, etc., Cancer treatment approved advances have been dismal. QOL (quality of life) issues have not been adequately addressed. Profit often outweighs QOL issues for some doctors.

Some oncologists are using EBRT (external beam radiation treatment) for cancer treatment. New technology consists of: IMRT, SBRT, IGRT VMAT, TrueBeam, RapidArc, Cyberknife, etc. This newer, faster, more accurate and easer to setup radiation equipment is of much benefit for doctors, staff and a good selling point to patients. However as far as reducing long term side effects, only very small gains have been made with the newer EBRT equipment. A patient should be skeptical if exaggerated claims are made about reduced long term side effects.

Radiotherapy can result in a 5% to 30% temporary or permanent drop in testosterone levels. This drop is determined by the testicular radiation dose, treatment equipment and planning. A significant drop in testosterone can result in increased fatigue, depression and sexual dysfunction.

Radiation can also occasionally result in secondary cancers and damage to “organs at risk” (organs close to the prostate). Radiation has high probability of sexual dysfunction. Sometimes radiation can also cause bowel and urinary problems. A 5 day SBRT radiation treatment is now commonly available with about the same results and side effects as a 9 week treatment.

It seems all of the best treatments for prostate cancer have not been approved and most are only available outside the USA. Treatment options outside the country or under development are HIFU, Laser, Hyperthermia, Boron Neutron capture therapy and orphan drugs, Just to name a few. Focal Laser Ablation is a good option with fewer side effects however it is not widely available in the USA and sometimes not practical.

Any cancer patient (Man or woman) who are being offered chemotherapy should be particularly cautious. Most Chemotherapy is extremely toxic and sometimes deadly. Without genomic testing or proof of the effectiveness of the specific drug being used on the exact cancer type being treated, Chemotherapy is often more toxic to the patient then to the cancer. Chemotherapy is also extremely expensive, profitable for doctors and often misused or sometimes overused.

Do you think the AMA, FDA or any other regulatory agency will stop the exploitation of elderly men with a high PSA or prostate cancer or approve new treatments at the risk of financially bankrupting thousands of treatment facilities and jeopardizing thousands more jobs? Do you think any regulatory agency will set guidelines for treatment and monitoring at the risk of upsetting the doctors who are over treating? Most elderly men are not willing to openly discus there sex life, incontinence or other personal problem making them a more vulnerable victim.

Most of the time few good choices exist for treatment. A prostate cancer patient treatment choice often ends up being the least worst choice or the choice with the side effects a patient thinks he can tolerate. Patients are often misled about the expected results of the treatment being offered.

Long term care consists of regular PSA testing for years. Long term care for side effects is often lacking or exploitive or ineffective. Often complaints of side effects are disregarded by nurses, urologists and oncologists and sometimes referred out to other doctors. The patient is sometimes left to figure out what to do about his side effects with the resources available to him. Long term side effects often consist of fatigue, bowel or urinary problems, sexual dysfunction and other symptoms. Patients with complaints of chronic fatigue are almost always told to exercise, get plenty of sleep, pace yours self and eat a healthy diet; this advice is of limited help for chronic fatigue. Often treatments for long term side effects are embarrassing, degrading, unavailable, nonexistent, costly, not effective, not offered or bothersome. Prostate cancer treatment often results in fatigue, depression, isolation and sometimes suicide. Billions of dollars are profited from E.D. drug and other ED products, catheters, pads and diapers, drugs for depression or pain or insomnia or incontinence, additional treatments and surgeries for side effects. Also treatments for the multiple and bizarre side effects from hormone ADT therapy (chemical castration).

Depression in prostate cancer patients is common, about 27% at 5 years (per some studies) and for advanced prostate cancer patient’s depression is even higher. Prostate cancer patients are at an increased risk of Suicide.

Almost all prostate cancer treatments usually result in erectile dysfunction. Loss of libido occurs at about 45%. Often claims of prompt effective treatment for ED if it occurs after treatment are misleading. Statistics for ED percentages from treatment are quoted after treatment with Viagra, Muse or other ED treatments, therefore the statistics are very misleading. ED rated at 5 years may be as high as 80% or higher for many treatments. The cost for ED drugs like Levitra, Cialis, Viagra and Muse are kept very expensive by drug companies. Many insurance companies will not pay for ED drugs or treatment. Less expensive generic drugs are usually unavailable. Viagra should have already become available in a generic form for about $1 to $2 a pill. This is further exploitation by the drug companies of men in general. These drugs are not always effective and may have side effects. ED treatments can also be embarrassing, not offered, not practical, painful, expensive/not covered by insurance or bothersome.

In conclusion: Prostate cancer patients are often elderly and exploited for profit. A blind biopsy is unsafe and newer test methods should be used. The treatments offered have horrible side effects. Some doctors are treating patients with low risk cancer or advanced age when monitoring is often a better option. Patience with low risk cancer or advanced age should often be offered “watchful waiting” or “active surveillance” instead of treatment. Aftercare for long term side effects is frequently ineffective, expensive, not offered or nonexistent. Prostate cancer patients are seldom told about chronic fatigue and the true risk of side effects are usually understated. Modern medicine often fails and victimizes prostate cancer patients.

If a patient has intermediate or high risk prostate cancer and dose not have advanced age he may need treatment. He should look into other advanced treatments if available. Also he should try and avoid Hormone therapy if possible because of the multiple side effects. If advanced treatments are not available a 5 day SBRT radiation treatment may be considered (In my opinion, it could be the best of the bad choices). SBRT seems to be fast, least invasive and traumatic. ED and fatigue is still a long term risk. Radiation with Hormone therapy has a high risk of long term fatigue.

Protect yourself: Do not let the sterile, friendly and professional environment of a doctor’s office denture you from protecting yourself from overtreatment or any unnecessary life changing tests and treatments. If you are concerned about misuse or privacy issues, refuse to fill out EPIC questioners and limit the information given to relevant information only. If you have a high PSA or prostate cancer, educate yourself. A patient should be extremely skeptical if exaggerated claims are made about minimal long term side effects from conventional treatments or blind biopsies. Bring someone educated or astute with you to your consultations and appointments. Avoid doctors that are mostly profit motivated. Do not submit to a blind biopsy if other options are available. Get a second or third opinion if you are being offered treatment with low risk cancer or advanced age. Learn about all your treatment options, testing and side effects. Verify everything you are told. Under the HIPAA law you are entitle to a copy of all your medical records and bills. Be very cautious if you are ever refused a copy of your records; demand a copy of your records and a reason for any denial and seek other advice. Get a copy and keep a file of your test results, biopsy report-Gleason score, PSA, MRI report, treatment plan, bills, insurance payouts, etc.. Carefully monitor your PSA. Expect a temporary increase (for weeks or months) in PSA after most procedures. Contact a good prostate cancer support group like PAACT “Patient Advocates for Advanced Cancer Treatments” at 616 453-1477 or a local support group without a conflict of interest.

Disclaimer: I have no confect of interest. I have no affiliation with any support group or other organization. I am not a doctor. I do not prevent, treat, diagnose, cure or advise on medical matters. The information above is for educational purposes only. If you need treatment or medical advice, consult a competent and trustworthy medical doctor.

Andy Weaver

I had a robotic prostatectomy on 11/29/16. Indications were they got it all, lymph nodes that were removed and tested were cancer free however my Gleason score went from 3+4+7 to 4+5=9 when studied by the pathologist. Surgery was fine, minimal pain. Catheter came out almost a month ago, I go to the doctor tomorrow for my PSA test which I am praying is zero! No erections yet but have managed to have many dry orgasms manually which are great except I am still pretty incontinent. I now it’s only been a month but am anxious to get back to they gym, on my bike etc (cannot go to the locker room with a diaper on, right??). I am still pretty swollen around my belly after a month, my pants don’t fit and I have lost 8 pounds since 11/29. Anyone have the same experience?

Ken shahan

Andy just wondering how your prostate history is now
I just completed robotic surgery 2 weeks ago
I had one sample come back gleason score 9 so they scared me in to operation
Biggest problem iam having is leaking every time I stand up. Go for test results next week. Wanted to see if things got better for you
Thanks ken

Fred E

On 1/3/17 I had davinci robotic prostatectomy. Surgery went well. Took longer than expected. Discharged the following evening.

Experienced little to no pain. Minimal swelling around my belly at first, now back to normal. Catheter was removed one week after surgery. Since then I wore diapers for a couple of weeks and now pads in my underwear. I feel my incontinence is improving day to day. Feeling hopeful.

I have managed a few dry orgasms while semi erect. Hoping too that this will improve with time.

I am 55, 6ft, 185lbs healthy and active. Post surgery PSA is .01. 2/1/17 I have an apt with my surgeon to review pathology report. February 3rd will be one month since surgery. My day to day improvements have me hopeful.

K Morris

Is there some inherent risk with surgery for men of a particular race? what I mean is, it seems that very few African American men choose the surgery robot or open laparoscopic for their prostate cancer. Am I wrong, or is there a higher risk (either short term or long term) involved with the surgery. I have to make a decision, and with all the information out there and the input from the doctors, I am undecided as to the best choice. regards

Alan Tate

HI
I had surgery about 3.5yrs ago, I have tried many methods to obtain an erection, the only success I have had is injections. I’m not a lover of needles but when it comes to my sex life it is important.
I’m wandering why there cant be a prostate made that can act as per the normal one; I’m not saying with semi fluid I’m just wandering why we cant have a replacement gland.
If there are studies or research done I’d love to know about it….

James H.

I am due to go in on 6/29/17 for robot-assisted radical prostatectomy due to gleason 3+4 on one core sample and gleason 6 on balance of core samples. Of 12 cores collected at biopsy, only 8 cores arrived at the pathologist. I was told that sometimes the cores “disintegrate” in the formalin fixative and therefore cannot be examined by the pathologist. Has anyone else had that experience?

Marcus Bolton

I’m 65 years old and had surgery 6 months ago, on Feb 14th, and I’ve experienced urinary incontinence ever since. My doctor has referred me to get pelvic floor rehab. I’ve been doing kegel exercises, but the doctor says I’m probably doing them improperly. He said if I do decide to do radiation I need to improve as much as possible in that area before beginning treatment. He said once I have radiation there won’t be any further improvement because of scarring. He was very forthright and told us there was no way the radiation beam wouldn’t affect my rectum. He said it radiates the front wall of the rectum, which could possibly leave me with bowel incontinence, urinary incontinence and fatigue. Has anyone on here had the surgery followed by radiation? I would really like to learn more about side effects I can expect if I have radiation. I am severely bipolar and on a lot of medication for it, so the hormone therapy isn’t an option for me. Thank you, Marc

Marcus

I’m 65 years old and had surgery 6 months ago, on Feb 14th, and I’ve experienced urinary incontinence ever since. My doctor has referred me to get pelvic floor rehab. I’ve been doing kegel exercises, but the doctor says I’m probably doing them improperly. He said if I do decide to do radiation I need to improve as much as possible in that area before beginning treatment. He said once I have radiation there won’t be any further improvement because of scarring. He was very forthright and told us there was no way the radiation beam wouldn’t affect my rectum. He said it radiates the front wall of the rectum, which could possibly leave me with bowel incontinence, urinary incontinence and fatigue. Has anyone on here had the surgery followed by radiation? I would really like to learn more about side effects I can expect if I have radiation. I am severely bipolar and on a lot of medication for it, so the hormone therapy isn’t an option for me. Thank you, Marc

Kelly Rice

Kelly
Hi I am 63 years old I just had the robotic surgery 9/18/2017 the side of effect I’m having extreme incontinence and erection. also constipation. My doctor informed me that the biopsy the cancer was excessive, it was inside of the prostate gland. My next appointment the doctor had to take another PSA TEST. I hope ever work out well. I need to know will incontinent, erectile dysfunction and bowel movement improve.

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