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pappajohn
Posts: 5
Joined: Oct 2011

Hi! Everyone, this is my first visit.
I was diagnosed Sep. 7, 2011 with Stage 1-2 with a gleason score of 3+3=6. 4 of the 12 biopsy samples being positive.
I am 65 years old and enjoy boating, swimming, working out with weights and the machines at the "Y". Also still like to play touch football with my grandson.

I am considering two methods of treatment, The DaVinci Procedure and Radiation. One of my main concerns is incontenence and I am unable to get any informatin from the Dr's. that I have seen that I feel is accurate. All of them say that their procedure is the best, of course.

Can anyone refer me to a place or person from whom I can get accurate information about this incontenence?
Thank You Very Much. John

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

John,

Welcome to the forum although I am sorry that you find yourself here. Many men who have gone through the same decision process you are facing now will provide you some great advice and encouragement. I would encourage you to read back through several pages of postings as they pretty much cover the gamut of the pros and cons of different treatment options and the potential side effects.

Almost all doctors tend to favor their particular specialty. Frankly, that's a good thing if you think about it. If they didn't believe in what they were doing why in heck should we? In any event, your question seems simple on the surface but in fact, like so many aspects of this disease, it is highly nuanced.

The real answer to which treatment is best for incontinence (assuming that it also addresses the underlying cancer problem) is actually pretty simple: It depends (and no pun intended on the adult diaper brand).

Many men diagnosed with prostate cancer have pre-existing urinary issues often associated with an enlarged prostate or other prostate condition that often shows up as a weak or intermittent stream, frequent trips to the bathroom, and not being able to make it through the night without visiting the toilet. While there may be a few exceptions, my understanding is that men with these issues before treatment will most likely have some sort of issue following treatment. The same is true with sexual vitality and potency. Men who have difficulty getting and maintaining erections before treatment will most likely not improve as a result of treatment for prostate cancer.

You basically compared the DaVinci method for prostate removal and radiation. You may know by now that there is also surgical removal of the prostate that does not use the robot. There are also many, many forms of radiation. There are also other treatments such as cyrotherapy, HiFU, and others that attempt to treat the cancer without removing the prostate. Each of these procedures have pros and cons depending on the details of your pathology at diagnosis and what your quality of life priorities are.

To understand the complexities of the issues surrounding continence you should first find some pictures of the male anatomy in the area of the prostate. I think most men (I know I certainly was) are clueless about how everything works when they are first diagnosed. A male has basically three sphincters, or muscles, that control the flow of urine through the urethra. These are located at the penile bulb at the base of the penis, the prostate itself, and where the urethra connects to the bladder. When the bladder fills with fluid it transmits a signal to the brain telling the man he has to go to the toilet, and at the appropriate time the muscles are consciously relaxed and urine flows through the urethra from the bladder sphinceter, through the prostate, and the sphincter at the base of the penis and out the end of the penis. Men with enlarged prostates find that in the cramped space between the pelvic bones where the prostate is located that the prostate presses against the urethra causing the weak stream or intermittent flow that drugs like Flomax and Avodart were created to address.

With surgery, (whether or not a robot is used) two of the three sphincters are removed and the urethra must be reconnected from the penile bulb to the bladder. This often has the effect of drawing the penis up into the body in order to reconnect the plumbing and many men who undergo surgery find themselves with a significantly (about an inch) shortened penis. This doesn't always happen, but I believe it happens most of the time. Some men find that the penis returns to its normal pre-surgery size after some months. Some don't.

To have continence after surgery a man must basically learn to urinate again by exercising the Kegel muscles which control the sphincter at the base of the bladder. There are exercises that are encouraged to prepare for this before and after surgery. Sometimes, even with great diligence in practice, men will continue to "leak" at times when they lift something or laugh or exert themselves.

One thing about surgery...no matter whether you use the robot or not...you will experience incontinence immediately after surgery. For some men this is relatively brief period of time (as in weeks). Others, unfortunately never regain anything at all that resembles normal control of the urinary function and resign themselves to diapers or pursue an artificial sphincter (there are posts about these devices elsewhere in this forum).

With radiation the prostate is not removed so there is no worry about losing any of the natural sphincters in your body. Sometimes, the radiation causes damage to the urethra or the sphincters and can cause a feeling of urgency or needing to go frequently. Fortunately, the urethra is made of pretty tough material and it usually recovers within a few weeks following the end of treatment. Drugs such as Flomax are often prescribed for this period but be aware that Flomax can cause other side effects such as a diminishment of ejaculatory fluid.

In general, most studies with modern radiation show that there are much fewer overall urinary issues with radiation than with surgery. If that is your only concern the choice seems rather straight forward. There are different types of radiation: brachytherapy where radioactive isotope seeds are implanted in the prostate, and various forms of external radiation. Modern radiation can develop highly conforming and focused beams that concentrate the radiation only in the prostate and not on surrounding organs.

There is some small percentage of men who develop severe urinary issues after radiation, either because of a botched radiation plan, a weaker than normal urethra, or some other reason. While none of the options have zero risk, modern radiation, in general, has much fewer cases of urinary issues than surgery and tend to go away faster.

Many men who have surgery are continent the day the surgical catheter is removed and never have another issue. From those I have known or read about on this forum I suspect they are the lucky ones. I have several friends who have had surgery and all of them admit to at least occasional leaks.

In my own personal case I had a diagnosis of Gleason 3+3=6, PSA 4.2, Stage 1c, normal DRE, and no history of prostate cancer. I was diagnosed at 59. My biopsy showed 1 of 12 cores positive for prostate cancer with 15% involvement. After much research I chose to be treated with Cyberknife SBRT radiation which consisted of 5 sessions, each about 40 minutes in length. I have had no urinary side effects, no loss of erectile function, and my PSA is now less than 1 at 0.8 and still dropping. In fact, I have had no side effects at all. It's almost as if it never happened. My treatment was 17 months ago.

I would encourage you to visit several specialists, both radiologists and surgeons to discuss your options in the light of your priorities. I would also recommend you get a second opinion on your biopsy results and start keeping copies of all of your medical records. The best thing a newly diagnosed patient can do, in my opinion, is to arm himself with solid knowledge gained from doing a lot of reading (visit Amazon.com and search under prostate cancer), talking to several specialists, and learning from men who have done this before you in forums such as this.

Good luck to you.

K

pappajohn
Posts: 5
Joined: Oct 2011

K I want to sincerely thank you for all the tme and information. I have considered five methods of treatment and THINK I hve narrowed it down the the aforementioned two.
With your additional information and advice I will be able to be more thorough and that is exactly what I was looking for.
I have done some research on the Syberknife procedure done at Radio Oncology Associated of Fort Wayne Indiana but, am not done yet.
If you don't mind my asking, where did you have your procedure done? (I will understand if you are reluctant to furnish me with this information).
Thanks Again: John

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

John,

My treatments were done at CyberKnife of Southern California at Vista, just north of San Diego. Radiation oncologist is Dr. Patrick Linson who is also the medical director. I was very, very pleased with the whole process. There are a growing number of CK centers across the US and although all of them don't treat prostate cancer, most do.

In addition to researching CK, I consulted with two surgeons (one open, one who used DaVinci) Proton Therapy at Loma Linda Medical Center, and SBRT (Sterotactic body radiation treatment -- this is what CyberKnife is) using the Varian Rapid Arc system. I also researched brachytherapy and consulted with two other cancer oncologists.

Prostate cancer is one of those diseases where the patient is left to decide amongst very different and complicated treatment procedures. Each doctor and specialist, as you noted in your initial post, tends to push their own specialty to one degree or another. I felt very little pressure from my CK radiologist who went to great pains to explain other treatments as well. They also do IMRT but he felt that I was a better candidate for CK. I thought so too and went with them. My backup plan was proton therapy at Loma Linda which impressed me very much with their overall process and approach to healing the whole man not just the cancer. Proton therapy is much, much more expensive than other choices and their numbers aren't any better than either IMRT or CK.

As Vasco pointed out, there are other factors to consider such as you PSA history, PSA velocity, PSA density and so forth when considering which treatment would be best for your individual case.

As another poster wrote in a recent thread: it's a good time to be diagnosed (if there is ever a good time) with the number of choices and advances available. The problem, in my opinion, is that most men don't take the necessary time to do their homework on the different treatment methods and their potential side effects and tend to go with what their initial diagnosing doctor tells them. It is good that you are doing your homework.

Like you, my priorities in deciding on a treatment were quality of life and the efficacy of the treatment.

Best of luck as your sort through your options and make a decision.

K

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

pappajohn,
Kongo has laid out the information for your question very nicely. I will just wish you best of luck and welcome to our forum.

lewvino

VascodaGama's picture
VascodaGama
Posts: 1528
Joined: Nov 2010

John

Welcome to the board.
Your status seems to be classified in the low risk group (stage1-2, Gs6). You have not indicated any chronology of PSA tests or DRE or symptom that has preceded the biopsy, however, if in fact your cancer is classified as an indolent type, you could do nothing therefore not enduring the pitfalls of risks and side effects from a treatment.
I wonder why you have decided (or been recommended) on two treatments (surgery and radiation).

An alternative to handle prostate cancer is Active Surveillance (AS) which is recommended for low risk patients at the NCCN guidelines. I have posted in another thread about the 15 years of results on this modality which was presented in the last PCRI conference (Sep 9-11, 2011, Los Angeles), by Dr. Klotz (a surgeon), which program has been running since 1995. It revealed a ZERO percentage of death cases in 15 years in patients with Gleason score lower than 6. Surely other characteristics are in play and it may not be appropriate to your case, but you could consider this modality and inquire details from an unbiased doctor, in preference from a medical oncologist.

AS involves a set of “vigilant” norms (tests, biopsies, image studies, etc.) to control any advancement of the cancer, therefore postponing a treatment until it is to be found threatening. Indolent cancers may never be a threat to a guy’s wellbeing or survival.

You can use a web search engine to get details on AS.

Wishing you the best.
VGama

VGama

pappajohn
Posts: 5
Joined: Oct 2011

Hi! VGama:
You are correct, State 1-2, Gs6 however: there is really no PSA history. I had a physical in July and my Internist found the nodule on my Prostate and did the PSA. Prior to that, to my recollection, I have never had PSA done, the result is PSA of 4.3. Perhaps it was done in the past and the Dr. found it to be within normal range and just didn't say anything to me about it. (Do not know)
I have been researching five methods of treatment. The original Prostectemy removal surgery, the DaVinci Procedure, Radiation, Chemotherapy and Watchful Waitng. I feel I am past the point of watchful waiting and am not really comforatble with this approach.
The little bit of research I have done leads me to believe the DaVinci Procedure is less invasive that the original type os removal surgery. Radiation appeals to me more than chemo
because of its accuracy and ability to avoid involving many other organs and functions.
These are the reasons I am leaning toward either the DaVinci or Radiation.
I am presently looking into the Cyberknife due to the latest computer guided beam and the fact that it actively follows prostate movement.
Thanks again for your input.
John

hopeful and opt...
Posts: 1293
Joined: Apr 2009

You mentioned that 4 of the 12 cores were positve, however you did not mention the involvement of each core. If the involvement was 50 percent or less, depending on other tests, you may be a candidate for Active Surveillance with delayed treatment.

This is the treatment that I choose on my 66 birthday, march 09, and I am continuing with this treatment. I suggest that you visit a specialist in Active Surveilance at preferably a major medical institution of excellence for a consult.

I have listed the things that has been done in my treatment which you might find useful.

I am listing one point here which is the basic reason that I continue with this treatment.

Active Surveilance for delayed treatment
is a very viable treatment decision for low risk prostate cancer, since 97 percent of men with LRPC are likely to die of something other than prostate cancer. The pathologic stage of patients who are closely monitored, is similar to initally treated patients with LRPC, so the treatment decisions will be very similar. I've been doing Active Surveilance for the past two and a half years . I plan to continue with this treatment option for the rest of my life if I can. If not I feel that I will still be able to seek any necessary treatment.

Swingshiftworker
Posts: 626
Joined: Mar 2010

Like Kongo, I had CyberKnife (CK) treatment and have had NO side effects whatsoever. All it takes is 4 or 5 treatments scheduled over a week. My prognosis is still pending but the uncertainty following radiation treatment is no different than after surgery. The levels expected are just different and, if surgery fails, you'll need to get followup radiation and/or hormone therapy.

The effects of surgery (whether open or robotic), on the other hand, are an entirely different matter. I am a very vocal critic opposed to the use of surgery for men w/early stage prostate cancer (PCa) because of the major risks associated with it. Following surgery, all men experience some form of incontinence and ED. Most men recover from these problems w/in a year BUT many do not and there are some horrific stories about those men reported on this forum and elsewhere who are still impotent and still use pads years after surgery and/or have to have artificial urinary sphincters and/or penile implants in order to regain urinary control and/or have sex again.

The best critique against surgery by a physician that I've read can be found here:

http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/

The article is written by a urological surgeon w/some 30 years of experience who currently works for a clinic that promotes the use of High Intensity Focused Ultrasound (HIFU) and other less invasive techniques in the treatment of PCa. However, the article is NOT a puff piece for HIFU. It's a very candid and precise critique against the use of surgery for the treatment of PCa and I recommend that you read and discuss it w/any surgeons you meet.

FWIW, as the article points out, surgery is surgery and the risks are SUBSTANTIAL whether it's open or robotic. Actually, there are studies out there that indicate that robotic surgery can be more risky than open surgery because of the lack of experience of surgeons using the technique and, if you choose robotic surgery, it's extremely important to choose a surgeon who has done as many PCa surgeries as possible (preferably over 1000), so that he doesn't end up practicing on YOU and learning at your expense.

Good luck!

Beau2
Posts: 232
Joined: Sep 2010

First of all I would like to wish the poster good luck in his battle against PCa. Sorry you need to be at this site; however, you have come to the right place to get good advice from guys who have been through a lot of what you are experiencing.

I really do not have anything to add except to correct something that was stated by two of the responders, that "all" men, following surgery, experience some form of incontinence .... I did not experience incontinece ... bought a lot of pads, diapers, baby lotion, etc. etc. in preperation but as soon as the cath came out I had complete control. I seem to remember others posting on this forum that they also were continent following surgery.

In general I have not found incontinence to be a problem with the surgery guys I know. In fact of the three guys I know none had a problem after a few weeks and one other was also immediately continent.

It is my opinion (ie. no facts) that many of the guys who post on this and other forums have problems (newly diagnosed with PCa, rising PSA post treatment, incontinence, ED, etc.) therefore maybe the two responders felt that "all" guys who went through surgery had some form of incontinence. But, I can assure you, at least in my case, that is not true.

Swingshiftworker
Posts: 626
Joined: Mar 2010

Beau:

Pardon me for being one of the posters for making the overstatement. However, I think that I can still safely say that MOST men experience some form incontinence following surgery -- some more serious than others.

I'm glad for you and the other men who have not experienced such problems but at the same time I'm am sad for those who have, which I think is unnecessary because I believe that surgery for "most" men w/early stage PCa is simply unnecessary. I'm particularly concerned for those men who continue to have serious incontinence problems many years following their surgery.

While you are others have been very fortunate, many others have not and the men here who have been newly diagnosed w/PCa need to know the serious risks that surgery presents if they choose it as their method of treatment.

Ciao!

PawPaw J
Posts: 34
Joined: Jul 2011

pappajohn, As you know there are sooooo many options for you. These guys are way more knowledgable than I on the various treatments, but if you do end up with surgery just remember you can pick the best world class surgeon in the best world class facility and still be one of the unfortunate to have side effects from the surgery whether open or robotic. We all react different. I am a good example that you just never know what your outcome will be. I chose open surgery with a local urologist. Some guys would think this was a barbaric decision, and you would think my chances of side effects would be higher. I live in Baton Rouge and just didn't want to travel so I picked the best surgeon I could find. Ends up I was dry from day one. There is no stress leaks at all. ED is there but it is functional with no aids. I am 2 months post op today. I went from going to bathroom 5-8 times a night before surgery to 0-2 times a night. That wasn't supposed to happen. Go figure. As kongo advise length may well be decreased so be ready for that regardless of type of surgery. My first post op PSA was less than 0.03 and that is the best news. Good luck in whatever you choose.

Johnny

David_B
Posts: 10
Joined: Oct 2011

Hi John:

I would get multiple opinions. Urologists will generally push for surgery. Radiation Oncologists will push for radiation. See my post "Why I chose radiation seed implants over surgery".

Regards,

David

robert1
Posts: 82
Joined: Apr 2011

I also weighted the risk of incontenience more heavily in my decision. Much higher than impotence but lower than documented long-term (10-15 year) cure rates. The data is clear that the risk of incontenience is very very low for virtually all forms of radiotherapy.

silverfox1
Posts: 36
Joined: Dec 2010

Pappajohn, I had the same issues as to what treatment to chose from and also had no help from the Docs as to what to do...they kept telling me to just pick one! I did my research and also used this site as a good resource to validate what I was reading about. I picked Cyberknife as the cure rate ( if the cancer has not spread beyond the capsul) was just as good as the surgery option with less potential side effects. All treatments come with side effects, it is just what you are comfortable with. I completed my Cyberknife treatments six months ago and had a good response to the radiation. My PSA has dropped from pre treatment of 4.4 to post treatment of .6 I also have gone from going to the bathroom 5 to 6 times a night to 0 to 2. My Gleasan scores were a 3+3=6 and a 3+4=7. Although my PSA was 4.4 when diagnosed, my PCP was more concerned about the Free PSA reading of 3. My PCP stated that the low reading was a red flag and should be addressed. You did not post your Free PSA reading? Do you know what it was? I am just curios. There is a lot of information to sort thru, wish you the best in your treatment choice.

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