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One Doctor's Opinion... Anyone see this?

jct9841
Posts: 19
Joined: May 2011

Thought I was close to making a treatment decision then read this.

Comments?

CORAL SPRINGS, Fla., Aug. 22, 2011 /PRNewswire/ -- In an extensive article reviewing the most popular prostate cancer treatments available to men today, location>South Florida urologist Dr. Bert Vorstman takes a critical view on manufacturers, hospital systems and some colleagues who minimize the after effects of radical surgeries while continuing to endorse the procedures as a viable option.

"I believe that the radical surgical/robotic treatment option has single-handedly increased the incidence of impotence and incontinence worldwide, and physicians would do well to consider the Hippocrates affirmation: As to diseases, make a habit of two things--to help, or at least, to do no harm," challenged Vorstman in his article. "Men who choose these treatments without reviewing alternative, less invasive options are playing Russian Roulette with the quality of life prospects following the surgery."

http://www.prnewswire.com/news-releases/prostate-cancer-treatment--the-good-the-bad-and-the-ugly-128172008.html

JR1949
Posts: 230
Joined: Jun 2009

I have not seen the article until I just read your posting.

I had radical prostatectomy March 09. My uro assured me that he practiced nerve sparing RP surgery. I am still impotent and incontent. The incontinence is better now, I was using avereage of 6-7 pads daily first year and now using average 3-4 pads during my waking hours and 1 lighter pad overnight. When I questioned my uro he said that it was difficult to spare the nerves as they are in such close proximity. In other words, it's just too bad for me.

He should have told me the facts and percentage of success and I should have asked.

JR

PawPaw J
Posts: 34
Joined: Jul 2011

I am sure that there are those doctors that may downplay the possible side effects of rps but that, in my opinion is not the standard. In my case I chose to have the open rp full well knowing the possible side effects (as most men going into this surgery do). My uro (who did my surgery) gave me a 85-90% chance of full recovery on incontinence and a 60-65% chance of full recovery on impotence. BUT he clearly stated that nothing is guaranteed and that I should be aware of that. I just had the surgery 15 days ago(will be posting my decision and experience soon for those considering the surgery)and at this point am totally happy with my choice. I have been totally continent from the minute the cath was removed 2 days ago. I stayed local in Baton Rouge for the surgery because of his expeience.(over 30 yrs). My surgeon actually performs the surgeries with another surgeon in his group that he has been partnered with for as many years. I know many that have the rp have significant problems and some for extended lengths but from my experience thus far I would do it again. Not sure about the ED yet but at my age (53) I felt the best long term outcome for being cancer free was surgery. Whatever treatment you choose just positive that it is the best for YOU and noboby else. We all have to live with our decisions whatever they are. Good luck in making yours, Johnny

JR1949
Posts: 230
Joined: Jun 2009

My decision was like yours, quanity of life, being cancer free, was the deciding factor for me. I was 60 when I had my RP surgery and my wife and I discussed all of the options and we both came to the decision that quanity of life won out. I will give my uro credit, he did an excellent job of explaining all of the options. As my wife told me, we have had a wonderful 35 years of married life and wonderful intimacy life so if we never had sex again she would still accept me as I am. God bless her for being so understanding.

As you stated PawPaw J, we all have to live with our decisons whatever they are.

JR

Swingshiftworker
Posts: 620
Joined: Mar 2010

Finally, someone in the medical profession speaking out candidly and honestly against the unnecessary use of surgery to treat prostate cancer.

What a great article! This doctor's opinion (a surgical urologist and a former NIH researcher w/over 30 years experience BTW) is no less valid, if he is the only one speaking out, if he is speaking the TRUTH and IMHO he is. The article debunks the various myths and disceptions associated w the effectiveness of surgery as a treatment for Pca and speaks plainly about why surgery continues to be recommended NOT because it is "better" but because urologists in the industry are both financially and emotionally invested in the procedure and reluctant to do anything better for their patients.

I've been speaking out against surgery as the "preferred" method of treatment for PCa ever since I first learned about it following my positive biopsy in January 2010. I was given IMHO a Hobson's choice between surgery and brachytherapy (which can create significant problems too) for treatment. That wasn't good enough for me and upon further research I learned there were other equally effective and potentially less damaging alternatives.

The following quotes from the article make the same points that I've been making since then:

. . . "I believe that these surgical treatment options represent a direct assault on manhood, and men choosing this radical surgical/robotic treatment option for their prostate cancer are playing Russian Roulette with their QoL [Quality of Life]. Furthermore, I believe that the radical surgical/robotic treatment option has single-handedly increased the incidence of impotence and incontinence worldwide and physicians would do well to consider Hippocrates affirmation: 'As to diseases, make a habit of things to help or, at least do no harm'."

"Despite the unsubstantiated bias for surgical/robotic removal of a prostate harboring cancer, especially for younger men, this cancer can be cured without surgery, robotically or otherwise. Prostate cancer just does not have to be cut out to offer cure and cure does not have to come at the expense of QoL with impotence and incontinence (limp and leaking)."

You can find the full article here: http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/#1.

If you haven't made a treatment choice yet, you need to read it to find out why surgery is NOT the way to go. If you have already chosen surgery and are experiencing problems, you need to read it to decide whether a medical malpractice suit is in order. And, if you have already chosen surgery and haven't had any problems, I'm happy for you but you need to consider yourself truly lucky because many other men have not been so fortunate.

There was a time when surgery was the ONLY option but that is no longer the case and as soon as we men refuse to accept surgery as a form of treatment for PCa, the sooner the urologists who promote it will have get trained in the use of other better available options and the sooner men w/PCa will no longer have to suffer the awful effects of surgery in order to obtain treatment.

HOORAH!!!!

Beau2
Posts: 228
Joined: Sep 2010

I googled Dr. Bert Vortsman. It appears that he is a principle in Florida Urological Associates (FUA).

Dr. Vorstman's primary area of interest and expertise is in the area of innovative techniques for outpatient, minimally invasive surgical treatment options. Based on his interest and expertise (and income?) it is not a surprise to me that he would make the statements he did. If he wants to grow his business he must go after the gold standard of PCa treatment. I refer to surgery as the gold standard because quantitatively and financially it accounts for the vast majority of PCa treatment (ie. most patients chose to be treated by surgery).

Swingshiftworker
Posts: 620
Joined: Mar 2010

If you read Dr.Vortsman's full article, I don't see how you can allege he's biased because he's interested in promoting other treatments less risky and damaging than surgery when there is an entrenched bias in the profession (financed in large part by medical manufacturers who make and sell robotic equipment like DaVinci) which insists in promoting surgery as the "gold standard" for PCa treatment by downplaying and ignoring the risks of surgery and overstating the effectiveness of surgery despite the knowledge that surgery often fails with tragic results (even planning in advance for followup treatment via surgery and/or radiation in anticipation of such failure) and despite the knowledge that there are equally effective methods of treatment that do not so negatively effect the quality of life of the patient.

VascodaGama's picture
VascodaGama
Posts: 1516
Joined: Nov 2010

JCT

Thanks for the link. This will help many to understand risks of treatments for PCa.
I am an Open Surgery survivor and I am very happy for the decision I made in committing to the treatment in 2000. I never experienced any symptom from the risks associated to the treatment and the only side effect has been erecting dysfunction (sex has been there all the way through) to the point that my “john” never pointed again to the two o’clock mark, but to the 3-4 direction in good attends. Incontinence never existed.

In my journey I have meet several doctors and read books and articles’, implying that surgery is not a “good” way to treat prostate cancer. Many refer to the sole matter of the side effects, not to the benefits neither to the RISKs from treatment (which are by far more dangerous). Dr. Bert Vorstman is one of them and I applaud his view and detailed description (and links) on his publication.(But, How reliable are his assertions?)
However, when one questions “If not surgery then what treatment should be done?”. The answer is ambiguous and all tend to suggest that “it depends upon each case”.

I would say that the “golden” treatment was the one chosen by any in this boat. For the newbies it will be the one that they have carefully decided. I have come across of many patients to whom treatment have become worse than the cancer itself, independently of the type chosen (RP, RT, etc), some more affected then others.

All treatments therefore are on the same platform as being the “golden ones” and all of them have risks and associated side effects. The problem with cancer is that ONLY total removal of the bandit from our body or the “kill/burning” of it inside us can assure CURE. To achieve that we have to decide if enduring a treatment’s risks is worth than keeping a Quality of Life.
The successful ones are lucky in that "Russian Roulette", even with or without noticeable risks or side effects.

I consider all treatments for prostate cancer still very primitive and I think that they are administered by caregivers on a guessing modality. Biased points of view are natural and any patient should be alerted to the fact.
Education on PCa is a “must do thing” before decision and so it is the effort to have a good diagnosis in which to base a treatment.

Thanks for posting.
VGama

robert1
Posts: 82
Joined: Apr 2011

In addition to 10 separate face-to-face doctor consultations and many phone conversations with top health care professionals, I spoke to dozens of surgery and RadioTherapy patients directly. This patient feedback, not doctor unput, was my primary factor in choosing RT.

There were plenty of very good RP stories, but the negative stories were much more numerous and often much more extreme.

Best wishes to all,

robert1

The Nev
Posts: 50
Joined: Sep 2009

I have to say if I had it to do over again I wouldn’t have surgery. My Dr did warn of side effects, but also said I was a good candidate and had a good chance of a full recovery. He also advised if not there were ways of handling the side effects. I thought I might have some issues but here I am 2 yrs post; incontinence still with me and ED still a major issue. I am only 56 and think I will have to live like this for 20yrs if I have a normal life span. Of course there's a lot to be said for being cancer free (so far) but who's to say another option wouldn't have me cancer free. It’s a though decision to make and maybe we only here what we want to from the Dr.

Swingshiftworker
Posts: 620
Joined: Mar 2010

I'm sorry to hear your story but thank you for your post.

It is not uncommon or surprising for men w/PCa who have had BAD surgical results to be reluctant to post messages about their experiences. However, it is much more common for men who have had relatively GOOD surgical results to post their experiences and tout the treatment as the way to go. However, this results in a skewed and misleading impression that surgery is without significant risk. This simply is NOT so and your story makes painfully clear how awful the consequences of that risk can be.

For those of you who are NOT paying attention, Nev said that he's only 56 years old and that he is looking forward to the possibility of at least 20 (and probably more) years of living w/the incontinence (the embarrassment and shame of having to wear diapers, carrying around extras, trying to find a place to change them when needed and trying to cover up the smell of urine that accompanies it) and ED (the inability to have "normal" sexual relations with a woman (or another man if you're so inclined) before "normally" occurring ED is even an issue which strikes at the heart of your self-image and how you view yourself as a man) caused by his surgery.

Is this an acceptable and necessary risk? I say NO (any risk of such consequences is too much to me) and any man (JCT are you listening?) who is considering surgery should definitely decide whether he's actually willing to live w/these consequences (as Nev and others must) if, as is often the case, surgery fails.

Beau2
Posts: 228
Joined: Sep 2010

Hi Swing,

Sorry for the time lag in getting back to you but I've been in the mountains and out of internet contact.

I think your reply to me contained exactly the point I was trying to make to the fellow who posted ... that Doctors who give you PCa advice/statistics (and Medical Equipment Manufacturers) are baised and will probably try to sell you what they are pedaling.

If I were Dr. Vortman (or the manufacturer of DaVinci or Cyber Knife) I would also write articles and advertise to sell my products. After all, I have to make a buck so I can pay off the wife's BMW.

It is up to the PCa patient to sort through this biased information and develop a treatment plan. Unfortunately, most of us were somewhat stressed when we had to make this decision ... and that is where input from this forum really helps the new guy.

Hope this explains my point.

FYI - I listen to KOA radio in Denver. Recently, the only PCa advertisement I have heard on KOA is one for Cyber Knife. It's a good one ... it really targets surgery and implies you didn't do your homework if you choose surgery instead of CK. I'm not sure what the CK docs paid for the advertisement but I am guessing they are getting their moneys worth.

mrspjd
Posts: 688
Joined: Apr 2010

Pay off the wife’s BMW? How about his own Bmer and/or Ferrari AND the beachfront vacation home? Did anyone mention the 40ft yacht, aptly named "Caveat Emptor?" (Latin for "LET THE BUYER BEWARE") ;)

Joe_F's picture
Joe_F
Posts: 1
Joined: Aug 2011

I'm 60 years old, and for the last several years I had a rising PSA. At first it was a 2 and "nothing to worry about", then it was a 4 and something to "keep an eye on", and then it went to 6 and my GP decided it was time to rule out prostatitis (I had that once before when I was 20), so he put me on Cipro for a month. Didn't tolerate that well so he switched to Bactrim. While I thought I was doing better on that medicine it actually gave me hepatitis. And, after a full 28 days on the antibiotics I still had a 6+ and rising PSA.

So, we went for the biopsy. 2 out of 12 cores were positive (left side only). Then we talked about options. My Uro Dr. (who performed the biopsy) ran down all of the options, including the ones not offered in this country. He also provided references to other physicians so that I could check out all of those options. BTW, one of the options we discussed was watchful waiting, and he said "well, you've already fluncked that": who knew?

I decided to do the radical surgery and elected to go to someone he had recommended for the Da Vinci method. He performed the surgery (3 hours) and I was home the next day (which vastly understates how bad I felt at that point). Two weeks with the foley catheter was "interesting". Having it out was great. Then came the incontinence. Not bad at all.
One "extra long, very thin, dry liner" per day unless I wear it to work out and then it's two.

Erections started spontaneously even with the catheter in. After it came out I experimented and everything works fine. Length of the penis is just a bit shorter when flacid, just about the same as before when erect.

Orgasms are kind of similar to before but any ejaculate is mostly urine, so that needs to be taken care of before engaging in sex (which I am still looking forward to (tomorrow will be the one month mark, tick tock).

I take my first post surgical PSA test next month and am looking forward to dealing with whatever that brings (hoping for "0").

I understood going in that the surgeon would spare nerves if at all possible. We agreed before the operation that removing suspicious tissue trumped erections. I had clean margins and no visible spread outside the organ.

Luckily he spared both nerves and I have one less problem to deal with. Could easily have gone the other way.

One thing about the robot that nobody explained before I went into the operating theater: they inflate the abdomen with CO2 (inert gas) which clears the operating field and creates a tampenade effect to minimise blood loss.

That gas also escapes through small holes so: I apparently have some hernias, both inguinal and hiatal. So I had a balloon for a scrotum that needed to be deflated by squeezing (I'll let you imagine what that felt like later) and bubbles of CO2 in my chest cavity, between the lungs and the chest wall. That was awfull for about a week. When I found out what it was I felt a little better but could have prepped for that impact as well.

There are many non-radical treatments. My Dr. suggested that the HIFU will ultimately be shown to be effective but that it had yet to reach the critical mass of cases needed to recommend it. He also didn't have much good to say about the potential for Cryotherapy in terms of it's ability to spare nerves. And he definitely said that if he had to recommend one over the other to his own Dad, or choose for himself that he would do surgery first and then conformal ratiation later if needed rather than the other way around since prior radiation tends to make for a messy surgical field. And, since the opposite is anything but true, preserving the effectiveness of both treatments made sense to me.

I was in great shape before and intentionally lost fat and put on muscle knowing that would help with recovery. It's now just less than a month later and I am swimming and walking miles.

Keeping my fingers crossed for a "0" PSA but ready for what comes...

Proton Warrior
Posts: 1
Joined: Aug 2011

What’s the fuss all about?

In criticizing some of the treatment for prostate cancer, Dr. Vorstman has said what many physicians believe but are not willing to state publicly. It took courage to speak out and I applaud his efforts. What he is saying will not only help those of us who are patients, it will also help the vast majority of his fellow physicians who are good, decent people by pointing out how the movement of big business into medicine is contributing to our growing negative attitude toward them.

But I already figured it out.

To me it is simple; in today’s health care we are customers, not patients. We just have to accept the reality that many physicians, urologists in particular, see us as customers to whom they can market their products and services. A prostate is worth as much as $40,000 or more and there’s a lot of competition for it. The excellent book INVASION OF THE PROSTATE SNATCHERS as well as courageous articles in the New York Times, Washington Post, and Wall Street Journal describe the negative aspects of the PROSTATE CANCER INDUSTRY and the abuses associated with physicians self-referring their patients to treatment they provide.

I had no idea I was walking around carrying something so valuable.

What’s wrong with making money? Are not most of us motivated by money? Bless the few of you who are not; I wish we had more like you. It is OK for physicians to operate like a business marketing their goods and services. There’s only one catch; they have to run their business using good business practices! This means truthful advertising with full disclosure of the risks of bad side effects of treatment and informing their patients when they are recommending a treatment from which they stand to benefit from financially. The problems is, as Dr. Vorstman has so well described, in the treatment of prostate cancer, many patients are not fully informed about the risks of bad side effects and over half of them are steered to surgery where they face the greatest risks of incontinence and impotence. Granted, not all prostate cancer patients who go through surgery have bad side effects but for an all too large number of them the results are simply appalling.

I recently completed a survey of a large number of patients who went through prostate cancer treatment with me assessing their attitudes toward the urologist who first diagnosed their prostate cancer and then recommended treatment. The results are not good news for urologists.

Harold Dawley, Ph.D.
Retired Veterans Affairs psychologist

robert1
Posts: 82
Joined: Apr 2011

It is my understanding that there are several forms of RadioTherapy that are statistically superior in every way to surgery (short and long-term BRFS, incontenience rates, impotence rates, etc).

There are no real head-to-head comparisions, but is this assumption widely held? Does anyone have reliable data of the incidence of secondary cancers from RT? Several Urologist I spoke to sell this frightening thought very hard. It was like their last line of defense.

My urologist recommended surgery without even getting to know me. At the same time, his urology group was ramping up its alliance with a Radiation Oncologist. Maybe they see the writing on the wall.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Robert,

I recall reading some of these studies months ago but can't seem to find them now. As I recall, the data for this comes from older forms of EBRT that were not as nearly precise as the more modern targeting methods of IMRT/SBRT/Proton.

My radiologist told me that the rate of secondary cancers from radiation were something like 1 in 14,000 or some very, very low number as to be statistically insignificant. The interesting thing is that he also said secondary cancers were easily treated by...drum roll...radiation!

In any event I think for "most" prostate cancer patients secondary cancers are really a moot point. As I recall, secondary cancers show up 10-20 years after treatment. Given that the median age for prostate cancer diagnosis is 65, many of the men who might get a secondary cancer are more than likely to have passed on from some other factor.

K

robert1
Posts: 82
Joined: Apr 2011

Thank you Kongo:

My age (55) was the premise three of the surgeons I consulted with used for trying to scare me. "You are a relatively young man with 30 years of life expectancy, so you need to remove the cancer so you won't experience a secondary cancer from RT later."

After hearing and reading some of the same stats you shared, this didn't register with me. I envisioned the horror of 10-20-30 years of potentail surgical side effects instead. The odds of long-term surgical side effects appeared far greater to me.

During my decision making journey, I met a really great guy who had robotic surgery by a nationally respected surgeon. He had experienced years of incontinence, complete impotency, terrible rectal issues and then had a recurrence. This was the worst story of my entire reseach, and it influenced my decision greatly.

Thank you again for sharing.

robert1

shipjim's picture
shipjim
Posts: 130
Joined: Apr 2006

I had pc in 2006.Of the available options, I chose DaVinci. While, unable to get an erection, I can experience orgasm, cover with a tissue as there's only one spchinter and it lets small amounts of urine out instead of the non existent sperm. I wear a light pad to cover sneezes, lifting etc.
Beyond that I have a totally normal life. In the long term having sex is missed but certainly not the point of living. My PSA remains at 0 and I'm out jeeping in the high country and fly fishing as well as fully enjoying my grandchildren and my life.
No regrets...jj

jct9841
Posts: 19
Joined: May 2011

Harold,

Would you share the survey?

Thanks,
JT

chitown
Posts: 90
Joined: Mar 2010

A semi-qualified plumber with big wrench is as dangerous as a a doctor in a similar situation. Prostate cancer has become very profitable and lots of wannbe doctors are cashing in. For each treatment, I will guess there are no more than a dozen doctors in the country worth trusting. In my opinion, getting treated by ones in this list is a better option. A big part of recovery is patient overall health before the surgery. That is not the doctor has responsibly or he/she has control over. Ignoring the talking heads and focusing on these 2 things are more worthwhile.

i consider myself very lucky in my journey. 15 months after DaVinci, have no ED issues what soever..back to pre-surgery normalcy, no incontinence..though have to urinate twice as many times during the day. PSA has been 0s and statistically less than 3% relapse chances in the lifetime.

Best wishes to all affected by this journey,

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

I agree with chitown assesment on surgery and other treatments. I also did extensive research and chose a very experienced surgeon at Vanderbilt for my Davinci. I've also been pulling 0's and no ED issue and no incontinence.

My relapse percent is higher since I did have a positive margin post surgery.

It pays to do your 'research'.

lewvino

The Nev
Posts: 50
Joined: Sep 2009

I felt compelled to add to this because I don’t want men thinking that all it takes to get great results is a great doctor. I was 54 years old when diagnosed and had no other real issues except arthritis. I did my research, I went with M.D. Anderson in Houston, Texas one of the best hospitals in the country. My doctor was well known had done well over a thousand davinci surgeries. In fact he did surgery on a friend of mine two years before me and was recommended by my friend. My friend had no incontinence and no E.D. issues after surgery. I on the other hand have had both E.D. that is not helped by meds except for a shot of Trimix every time and incontinence that is still an issue 2 years post surgery. I have been a member of the zero PSA club so far and there’s a lot to be said for that, but I don’t even come close to having any normalcy in my sex life and I pee myself everyday. The facts are Yes choose wisely if you decide to have surgery, but don’t think for a minute that it means you will not have issues after surgery. Even the best of the best have patients that have not had great outcomes. Just information not suggesting in anyway if one should or should not have surgery.

mattmans5
Posts: 70
Joined: Jan 2011

with all the treatment options and web pages like this , today , we are lucky , to have a choice .

I have seen the interview where he says that he was complaining for years to his doctors , and in his words , you can imagine how incessed you feel when you hear sorry its to late ,, sadly he died from prostate cancer

good luck with your research wishing you the best and I have no regrets with my choice hopeing to be around for awhile

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