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55 years old and considering nerve-sparing radical retropubic prostatectomy (RRP)

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Posted 8/6/2012 11:16 AM (GMT 0)
"55 years old and considering nerve-sparing radical retropubic prostatectomy (RRP)"

All surgeries start off with the intentions of sparing the nerves... Your surgeon won't know for sure if that can be done until he is cutting away.
Posted 8/6/2012 2:21 PM (GMT 0)
Wow, I wish I would have come back to this thread last night, I would have slept much better! I don't even know where to start in terms of thanking each and every one of you that have provided experience, information, etc. Thank God I have found this forum. . . . .

Mel, I have added your questions to my list - thank you for sharing.

John T thanks for weighing in; Your points in favor of Brachy are well put, and will help again as I move down this path towards a treatment decision. I have seen the report you mention as well but that was a bit ago and I honestly did not fully engage with it as I was deluging myself with data. I'm at the point now where I am able to go after my data anaylsis with a "rifle" versus a "shotgun" approach. Thanks also for the 3 Brachy centers; I have heard about Dattoli and Seattle, but not much on Chicago so I'll be researching more on that group as I live in S.E. WI and work in N.E. Illinois, so they are in my backyard so to speak. A special thanks for alerting me to Dr Barken - as I have said many times the most frustrating thing for me is that I just get this sense of getting biased input from the medical field sometimes and I have been searching for a professional that has no vested interest in my situation - other than my well being. I will be working to connecting with Dr Barken starting TODAY.

Mel and NotSo, and also David - regarding getting advice from an RO and also seeking out another opinion from an expert RO - I met with Dr. Colleen Lawton at Froedtert, who heads up their Radiation group. She directed me towards surgery as the best option, versus any radiation. When I pushed for why, she told me:

My young age (55) and the life expectancy I should have.

The fact that I am in excellent physical condition which should decrease the potential for post-op issues including incompetence and ED.

The number of biopsies that were found to have cancer (see Gleason details in my signature line) from the perspective my cancer is well spread and therefore we want to get rid of it before it goes beyond the prostate.

She also made the point that should the cancer return and I go with radiation first, then surgery becomes very, very difficult due to scaring of the prostate and other issues, and therefore other salvage approaches may not be as effective - whereas by going with surgery first should the cancer return the options and success opportunities for salvage is in a much better position.

So then I was taken aback that a RO would provide that direction - however what I continue to weigh in on is what I am understanding to be factual-based, is the whole world of side effects. The catch-22 of "You're young enough to have a better chance at minimal side effects" versus "I'm too young to have to live with those side effects and give up my quality of life."

I'll quite rambling for now and look for continued input. THANKS to everyone again. I absolutely am committed to publishing a journal of my journey through and beyond treatment so that hopefully I too can "Pay Forward" to others that will come to this path. . . . .
Posted 8/6/2012 2:40 PM (GMT 0)
Yoop,

I would get an opinion from a seed doctor. There are no do-overs and I would not want to be thinking "Maybe I should have gotten one more opinion". I know it gets confusing and you get sick of seeing another doctor for another opinion, but better to do it now than to be wondering later.

Good luck to you. I know this is not an easy process.
Posted 8/6/2012 5:24 PM (GMT 0)
John T - and/or anyone else out here - did you have a session with Dr. Barken? Was it in person or over the phone? I just spent some time researching what he provides and am considering doing this and would like to know what I should have available to provide to Dr. Barken.

Thanks!
Posted 8/6/2012 5:44 PM (GMT 0)
Yoop,

Just weighing in. I'm a wife of a young, and healthy 46 year old husband (diagnosed at 45) who opted for surgery. Like many here, our goal was 1. cancer, 2. continance. 3. ED. We are doing well on on fronts. Numbers, 1 and 2, especially 2, were easy to overcome. We've been diligently working on number 3, and everyday it gets better. Like you and your wife, we too have a very active sex life. What has worked for us during past 6 months is our attitude around ED. Hubby never allowed it to get him down. Yes, the first several times of trying were very awkward, but we didn't stay stuck there, dwell, or make a big deal about it. We kept trying, and made the most of where we were at in the process, recognizing that it was different, BUT expecting it to slowly improve.

Hubby had 1 nerve spared, and pretty severe ED following surgery this past February. Our URO made sure we had the tools: levirtra, trimix, and a pump to keep at it, and we've used them all at different times :) His Physican's Assistant made an excellent point, however, during our trimix visit when she said, "you can use trimix, but sex starts in the mind", and isn't that the truth.

I don't know the numbers, but I'd imagine ED is pretty high following surgery, but for us, that was secondary (even though we were very sexually active). I don't want to say I'd expect it, BUT if you do go with surgery and ED happens, work through the process of sexual rehab with a positive attitude, knowing yes, different, even awkward, but headed towards better. You are young, healthy, and determined, so you can definitely make it work. We went into surgery knowing that ED was a real possibility, even though hubby was young. We never held onto nor questioned "will it happen", we accepted that it probably would, BUT we wouldn't let it slow us down (we're persistant like that).

Hubby went back to Levitra this weekend and had 100% percent sucess, 6 months post-op! I call that SUCCESS!

PS I'm not pushing nor endorsing surgery, just sharing the experience of a young, healthy, sexually active couple. Good luck...
Posted 8/6/2012 7:05 PM (GMT 0)

A Yooper said...
Wow, I wish I would have come back to this thread last night, I would have slept much better! I don't even know where to start in terms of thanking each and every one of you that have provided experience, information, etc. Thank God I have found this forum. . . . .

Mel and NotSo, and also David - regarding getting advice from an RO and also seeking out another opinion from an expert RO - I met with Dr. Colleen Lawton at Froedtert, who heads up their Radiation group. She directed me towards surgery as the best option, versus any radiation. When I pushed for why, she told me:

My young age (55) and the life expectancy I should have.

The fact that I am in excellent physical condition which should decrease the potential for post-op issues including incompetence and ED.

The number of biopsies that were found to have cancer (see Gleason details in my signature line) from the perspective my cancer is well spread and therefore we want to get rid of it before it goes beyond the prostate.

She also made the point that should the cancer return and I go with radiation first, then surgery becomes very, very difficult due to scaring of the prostate and other issues, and therefore other salvage approaches may not be as effective - whereas by going with surgery first should the cancer return the options and success opportunities for salvage is in a much better position.

So then I was taken aback that a RO would provide that direction - however what I continue to weigh in on is what I am understanding to be factual-based, is the whole world of side effects. The catch-22 of "You're young enough to have a better chance at minimal side effects" versus "I'm too young to have to live with those side effects and give up my quality of life."


That seems pretty sound advice from my experience. It is a good point that you highlight about treatment options after surgery. That was one of the factors that helped me to decide on surgery. Whereas if brachy or external radiation doesn't work then I was told that surgery was not possible. I decided on surgery knowing that ED would probably be a problem but on balance it was right for me overall. At 19 months I can now have intercourse and orgasm with daily cialis and so things are ok although I am still hoping for a fuller recovery by 24 months in terms of more spontaneous erections. The problem with the radiation treatments is the risk of longer term ED. After surgery I am now cancer free, continent and have useable function which can only get better. The last 19 months have passed much quicker than I thought they would and so on balance I am with the option I took. As I said before it is a personal choice as we are the ones who have to live with the consequences.
Posted 8/6/2012 8:36 PM (GMT 0)
Steve,

Not intending to nit-pick, but not all surgeries (prostate) are intended for nerve sparing. Depending on the anticipated scope of the cancer based on the biopsy, some RP's are planned from the start to be wide margin operations with no intention of nerve-sparing, the goal being to make greater certainty of cancer erradication.

Mine was intended to be that way, and I was told that I would have full ED after. My wife and I mentally and emotionally prepared for this. My left side was cut wide as expected, but due to some quirk in my prostate bed anatomy and some surgical difficulties, the surgeon was unable to remove the right side. As I have mentioned many time, the report read "right side damaged and left intact". It was on the right side where I was left with a positive margin (small), that quickly caused recurrance.

With the planned nerve-planning RP's, the intent is to preserve both nerve bundles, but if the surgeon sees reasons to remove one or both bundles, in order to eradicate the cancer, then the intent of nerve sparing goes out the window. We have men here at HW where that was the case with one or both nerve bundles.

Was just trying to clarify that difference in thinking.

David

Post Edited (Purgatory) : 8/6/2012 4:10:19 PM (GMT-6)

Posted 8/6/2012 8:49 PM (GMT 0)
Yoop,
I've not had any experience with Dr Barken, but have read several articles by him and have seen his advice to patients on Prostate Pointers p2p. His advice is very sound and he seemed very up to date on all the current issues and is very knowledgable about PC. The fact that he is unbiased as he works as a coach for the patient is very appealing. I noticed on his web site that he asks for a donation for consulting instead of a fee as his organization is non profit. He puts on weekly web shows and brings in specialist from different fields to give presentions that I have found to be very informative. I think Zufus may have had some contact with him, so Bob, please chime in.
Posted 8/7/2012 9:06 PM (GMT 0)
I was originally told that the extent of the cancer was such that I would have to lose the left bundle. That was the plan from my initial urologist who did open surgery. I then went with a different surgeon who did robotic. He was able to save both bundles but had to remove some nerves from each side and able to remove all the cancer. The point I am making is that whatever the plan things could well be different when the surgeon gets in there. I decided that the improved magnification from the robotic would increase my chances of saving both bundles and that is how it turned out. The open surgeon would not even have tried to save both bundles.
Posted 8/7/2012 9:36 PM (GMT 0)
Yoop,

One thing to bear in mind on this forum is that we, the guys who post here, are not a particularly representative sample of PC patients. The fact that you won't hear much from guys who were treated, say, two years ago, and have had an excellent outcome does not mean that such men don't exist, merely that they have other things to do than hang around the forum. Many of the long-timers here are that one-guy-in-ten for whom things don't work out. The other nine -- the ones for whom ED recovery went well -- are too busy annoying their wives to hang out in the forum answering questions from worried newcomers such as yourself.
Posted 8/7/2012 9:59 PM (GMT 0)
Yoop, I'm younger than you ;), but what your physician's assistant told you is what my Uro told me. "At your age, (42) your biopsy stats (G6), and your overall good health, you need to think about your future. If everything goes as planned (there's the rub), you will not die from this AND you should regain your urinary and sexual function that you had prior to surgery. Now, things can happen in surgery... If the nodule that I felt in the DRE is far into the perimeter of your prostate, we may have to shave very close to the nerve on that side. My first goal is to get the cancer. If I can't save the nerves, I can't. But we'll deal with that later. Given what I know about you from exams and biopsy, you are about 80% that it has not escaped the prostate and that your nerves can be spared. I want you to talk to an oncologist too."

The oncologist said that he could do seeds and that the treatment would be every bit as successful as the surgery, BUT, "I would recommend, at your age, you have the surgery. You came to the right place."

I went to Johns Hopkins. I live in Baltimore. I had my surgery November 4, 2011. I had one wet night after the catheter was removed. I've not gotten a spontaneous erection, but since I hate the side effects of the meds for ED, I've been working on my Physical Therapy w/o. I see improvement, but I am not back to performance levels prior to surgery. My Uro pounded at the two year mark. But both my wife and I are pleased with where ED is right now considering the time since surgery.

I recall reading many articles and the stats on ED seemed to be inversely related to me. Surgery has immediate SE's, but very good probability for recovery if nerves are spared and the situation prior to surgery was natural and w/o meds. And that SE's with ED were not immediate but delayed further down the road. I wish I had a citation for you on that, but I don't. Perhaps others do. But I do recall reading it.

The other reason I chose surgery is that I didn't think it prudent to start collecting high levels of radiation at 42. I may need it later in life for other treatments. This was part of a conversation my Uro and I had, who is also a Professor of Oncology (but not the Onco I spoke with in consultation about seeds...)

The care I got at Hopkins was excellent. I felt I was in extremely knowledgeable and capable hands. Whatever your decision, when you get to THAT point, you go for it and don't look back.

Good luck.
Posted 8/8/2012 2:14 PM (GMT 0)
Peter, point well made about the population make-up on this forum - let's face it the demographics here are going to be most slanted towards newbies like me trying to get information, then by those that have had treatment of one type or another and had problems - so they're back here searching for answers too - and then finally by those that had various levels of success post-treatment and are kind enough to come back to help the rest of us!

Having said that I will continue to weigh-in what I find here accordingly - because at the end of the day, for me, I need to gain all of the insight from those that have been there, done that, as well as from the experts in the medical realm - so that I can come to my decision for treatment.

One point that was made somewhere is that using surgery will remove the prostate and the cancer contained therein, but have no effect on cancer that has escaped - while on the other hand using the radiation approach (Brachy alone or with external) will get the cancer in the prostate as well as surrounding regions. Pretty compelling point to me. . .

Then I am also weighing in the whole SE argument for both - surgery more likely near term SE's but better prognosis long term vs radiation SE's less likely short term but potential issues over time. THAT then leads back to QOL - let's assume that at my age (55) I've got 25 years left - do I go for sustained QOL and "roll the dice" for the outlying years, or do I take the hit of surgery and hope for the best post surgery and long term.

Door's open for more input guys, as Dude mentioned, Go For It - I'm waiting! (:
Posted 8/8/2012 2:19 PM (GMT 0)
Yoop,
I had open surgery on 2/14/11.
I did the reasearch and elected the above. My decision was based on the fact that IF surgery failed I had the back up of radiation for a second shot at a cure. I then selected the surgeon with the most experience in open surgery at the Cleveland Clinic.
i have no regrets. Am continent and do not have ED.
Posted 8/8/2012 2:33 PM (GMT 0)
Yooper, all of this would be so much easier if the various treatment options would come with guarantees.  Trying to come to a decision is sort of like peeling layers off an onion....there's always more of the onion left, and the process can bring you to tears.

As you've mentioned, you could live 25 or 30 more years, so any decision necessarily must take into account the likely Quality of Life that might follow the chosen method of treatment.  At the same time, you want to choose the method of treatment most likely to ensure those 25 or 30 years.  What a conundrum!

I guess that's why I've seen a few comments here on the forum from guys who envy those who simply visit the uro, follow the doctor's advice, and get treated.  Not the "smartest" approach, though in the end most of those guys may be not much worse off than the rest of us.

I have a hunch which treatment you're going to choose, but I'll keep my guess to myself.  I also know what I would do if I were in your shoes, but I'll keep that to myself also.  The great thing is, you have options, and good ones.  Not every disease allows for that. 

It's been very interesting to follow your thinking as you make your way through this process.  Good luck.

Did you get the document I sent?  Just wondering.  Bill

 

Posted 8/8/2012 2:50 PM (GMT 0)
Clock-- I sent you an email.

Yoop -- not an easy decision. As I said, I chose surgery due to:

1) SE are known and will hopefully resolve quickly.

2)I would know the exact pathology

3) I would have the second bullet, radiation

It helped that I was able to research surgeons and found one of the best. I would have done open or robotic, although the faster recovery time for robotic was appealing to me.

Also, I did consult with a surgeon and radiation expert.

Others will give you excellent arguements for their choices. As someone else said, no guarantees. Unfortunately for me, the curative bullets failed. The surgery went well. Incontinence resolved quickly. ED is still an issue.

One other comment: Folks will tell you that you have plenty of time to research and make a decision. That is probably true. However, you are currently a G7. Sometimes it turns out to be worse after surgery (usually not). So, take your time, but don't dawdle too long. A few months is probably okay, but I would suggest trying to get whatever tx. you decide done in 2012. (At least ask a good oncologist how much time you have to decide!)

mEL

Posted 8/8/2012 3:30 PM (GMT 0)
Yoop,

You are going through the same things and thinking that I went through. It's not an easy decision to make, especially with the potential life changes it could have. I'm one of the ones (and certainly not the only one) that does not have any problems or SE, but I continue to hang around here just to give a report of what I went through. I don't have nearly as much knowledge as some (or most) people here, but I can report honestly what my experience was and is.

I thought the same thing about this site...are the people here only here because they have problems either with the nature of their cancer, return of the cancer or because of the SE. I wish there was a way that we had a spreadsheet here where everyone who went through this site and had some sort of a procedure or operation, posted their results for good or bad once a year.

I chose seeds because:

1) Less invasive (outpatient procedure similar to biopsy). Have you ever watched the robotic operation on YouTube? It's not a simple operation. Take a look at it. Yes, your prostate is out of you for slicing and dicing and top get a final biopsy (but I don't know what good that information is after you made your decision), but is the surgeon going to "get it all?"
2) Same (or better) "cure" rate over 15 years.
3) No incontinence problems
4) Little or no ED problems. If this gets to be a problem in years to come, Viagra should take care of the problem. I also think it is something that will affect a lot of men as they age whether they had seeds or not.
5) No catheter after procedure.
6) Back to work and life quicker (I was out of work for a week, but could have gone back in a couple of days).
7) Don’t ejaculate urine when you have an orgasm. (Yes, t his happens)
8) No penis shrinkage (this is often disputed, but it seems to be a fact. You can look up threads on this).

A lot of these problems are not addressed by the surgeon in the consultation. I don't know why. Thanks to the good people here I did ask these questions.

Good luck to you on what ever you decide. It ain't easy!
Posted 8/8/2012 3:38 PM (GMT 0)
Thanks again guys for weighing in, I really do rely on your input as part of my decision making process.

Bill, if you are referring to your journal, yes I did get that back on August 2nd, and have read and re-read it a few more times, thanks for sharing. I'm sure you do have a good guess for where I'm heading, I've been out here alot and I know you've been following - thank you for that!!!!

I'll still be out here watching, listenting, putting it all into my collective bin of information.
Posted 8/8/2012 4:27 PM (GMT 0)
Yoop,
If you go on the New prostate Cancer Infolink and do a search on QOL or QOL comparisions you will find many articles that compare the QOL of all the various treatment options. This will give you a much bigger, unbiased sample size than trying to use this forum as a sampling platform. I've tried it in the past and 50% of total posts throughout all time periods deal with some side effect from surgery.
Obviuosly a biased sample, but still a concern because the number is so high and many members feel they have problems.
Regarding SEs: The consensus is that side effects from all treatments plateau at 2-3 years and the side effects you have at that point in time regardless of the treatment are the ones you will be stuck with, both good and bad.
Posted 8/8/2012 4:42 PM (GMT 0)
I'm just curious...Let's take surgery out of the picture. Do we know what percentage of men eventually suffer from ED due to aging? We have a couple of friends that are about 49 or 50, and need Viagra. Both were very forthcoming about it, and didn't see it as a negative. Both very sexually active (I know their wives). Is ED from PC surgery worse than *most* or *some* men will eventually experience due to age? 

Could it be nerve bundles spared or not? 

Post Edited (walkbyfaith) : 8/8/2012 10:49:57 AM (GMT-6)

Posted 8/8/2012 6:23 PM (GMT 0)
Yoop, tagging on to what JT said, there was a very interesting artilce titled, "Quality of Life Among Prostate Cancer Survivors", that was published in the NEJM in 2008.  In fact, this was helpful to me in my decision making (just Google New England Journal of Medicine Quality of Life Prostate Cancer and it will pop up).  I would encourage you to get beyond the boiler plate and the abstract, which have been roundly criticized as being a poor summation of the article.  The beef is in the tables and graphs...particularly noting the ages of the subjects and the relative change in the side effects over time.  An in-depth view of this article will provide you with some valuable insight, IMHO.

Jim

Posted 8/8/2012 8:02 PM (GMT 0)
I needed to edit something...

I recall reading many articles and the stats on ED seemed to be inversely related to me. Surgery has immediate SE's, but very good probability for recovery if nerves are spared and the situation prior to surgery was natural and w/o meds. And that SE's with Radiation, the ED was not immediate but delayed further down the road. I wish I had a citation for you on that, but I don't. Perhaps others do. But I do recall reading it.

Just a small edit, but it needed to be clarified...

Again, whatever you choose, IT will be right for you and you shouldn't look back. Ever forward!
Posted 8/8/2012 9:19 PM (GMT 0)
John T and Jim - just went out to your recommended sites and downloaded the articles - thanks! Haven't been able to read them fully yet, but will later.

Walkbyfaith - your point/question is very valid - from what I've seen the best prognosis is to "get back to where you were before treatment" - and if that happens then great, but certainly after that age still wins....

Dude, thanks too for updating - and I also get your comment (as also stated by many others out here) that after I finally get to my decision - there ain't NO looking back!

I'll be here so anyone else that wants in, come on down!!!!!
Posted 8/8/2012 10:01 PM (GMT 0)
walkbyfaith, you're on to something there. I'd like to see some stats about natural occurring ED, as a result of purely aging. Maybe one showing the effects of high bp meds, or statins, or anti-depresive drugs, seperate from the known side effects of prostate cancer treatment. Wonder what the numbers are for natural ED by age group- 50 year old, 60's, 70's. That would be interesting.
Posted 8/8/2012 11:13 PM (GMT 0)

Gleason 6 said...

I chose seeds because:
1) Less invasive (outpatient procedure similar to biopsy). Have you ever watched the robotic operation on YouTube? It's not a simple operation. Take a look at it. Yes, your prostate is out of you for slicing and dicing and top get a final biopsy (but I don't know what good that information is after you made your decision), but is the surgeon going to "get it all?"


The information from the post surgery histology is very important because it tells you exactly what the extent of the cancer was and whether the surgeon has been successful in achieving negative margins. If not then radiation is an option to clear up what is left. With radiation (brachy or external) there is no way of knowing whether the treatment was 100% successful. For me this was an important factor in deciding to go with surgery.
Posted 8/9/2012 12:46 PM (GMT 0)
Yooper, you are certainly well-informed on the various treatments and SE!  My husband met with several doctors explaining the various treatments available.  After the morning sessions, the doctors met and suggested surgery as his best choice.  Indeed, he had made that decision himself, and I supported it.  We are a bit older, but had a very active sex life.  The DaVinci surgery went great (as the doctor said) and the cancer was self-contained in the organ.

Ron did have a problem with incontinence for about 4 months.  He attended rehab sessions to strengthen pelvic control and work on those Kegels.  (I hope you are doing them right now.)  Once in awhile he'll have small leakage, but it's not a problem.  Unfortunately, ED is a problem.  Due to major health problems he hasn't worked on a solution just yet.

A recent hospital stay included MRI and CT scans on various organs.  There is a relief knowing he is cancer free (so far).  We've been through a lot but the physical closeness is there.  It is something couples work on together.

I wish you much good luck as you are coming to terms with your decision!

Best wishes,

Aimzee

 

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