M1, even though I am a "surgery guy" who has had an excellent outcome 6 years later, I also reiterate the need to consult with radiation experts simply because without their input, you don't have the whole story. It's like this: Would you ask a Ford dealer about the benefits and downsides of buying a Tesla?

Hello Guys - it has been awhile so I wanted to post where I am at so far. I went for a 2nd opinion with a Dr. James Peabody from Henry Ford Cancer Institute. He is a senior staff member of the Vattikuti Urology Institute at Henry Ford. His specialty is Urologic Oncology and Robotic Assisted Surgury. I actually thought I was set up to see a radiation specialist but it was worth the visit anyways. During our discussions he did advise with my diagnosis that radiation was a good choice as well. I heard many of the same things from Peabody as I did from Dr. Johnston (also a robotic surgeon) as to why surgury is a good option. At the end of the conversation I asked him what he would do if he was in my shoes. His honest opinion and w/o bias (as much as can be believed) was that surgery would be the way he would go.
For me, after making a decicion that I believe has a strong % that the cancer will be eliminated, I am mostly concerned with the incontinence part more than the erection part of it. My wife is not concerned about the erection part and since she has had everything removed internally already it is perhpas much the same for her already. She doesn't desire or need it like I still do, but is always a willing partner would be the way to put it. I just believe that I will be incontinent at some point for good as a result the surgury (loss of the main valve) and mother times slow degradation of the remaining pelvic muscle strength. I know there are options to correct this as well but it still weighs on my mind and I want to avoid this at my age if possible. I have already started trying to build up my pelvic muscles.
I understand the incontinence risk level is less with radiation initially but levels out over time. As far as the erection part, Dr, Johnston advised surgury will likely impact it permanently. His example was if I am a 7 out of 10 on a hardness scale, I might be a 5 afterwards. Everyone is different though was his cautionary advise. If I knew that with radiation I could maintain erection quality and incontinence would not be an issue, I would choose radiation. Not understanding the % succes rate with radiation on either of these two points though has me leaning towards surgery. I have actually just set a surgury date for July 28th, but I am still on the fence a bit and can back out with no trouble. I think might try to see a radiation guy still. Any further thoughts would be appreciated guys.

If that is your decision, I'm certainly not going to try to talk you out of it. Having long term incontinence or long term ED is far from a sure thing--there are guys here who will tell you that, but it's just not true.

If you're at peace with it....then get yourself ready and get it done. Lose a few pounds if you need to, exercise as much as you can, eat healthy, learn how to do kegals and start them now.

Thanks Michael and Halbert,
You are right that it is unlikely a surgeon would say radiation so I get that. A few reasons both surgeons and the urologist think sugery is a beter path is that radiation is still an option if it comes back, the surgery later is more complicated if radtiation is chosen and fails, and the removal will allow for a more accurate diagnosis on the extent of the cancer...
I do want to see a radiation guy yet to settle this. I would be at peace either way I think as I do believe I'll be around a good while yet with either path I take. I'll post again after making a final decision. Thanks for the help guys.

Thanks Halbert. I’ll keep this in mind. They didn’t say surgery wasn’t possible - just that it can be a more complicated and perhaps with a more likely hood of negative after effects. They did not get into what other possible options are also available if radiation is chosen and then fails. I agree with you - it is more of a sales pitch than anything. Given my diagnosis - it would hopefully never be a path that I would need to go down. So thanks again!

M1, that's great. Hope I didn't come across as too harsh but we all really want the best for you. We have been in your shoes and understand the angst. But we have all also seen the importance of getting the multiple opinions and doing our homework. When you have completed your analysis, had your procedure and are on the way to being cured we look forward to you giving advice to new patients who arrive with the same worries that you now have.

BTW, Halbert expressed very well the frustration many of us feel when we hear this surgery sales pitch about saving radiation for later. When you speak with your radiation oncologists they will likely tell you that the radiation is likely to cure you and will explain that there are options if it fails.

Whatever your choice, you will be more at peace with it once you have the breadth of education on our disease.

Jim

M1, i agree with Jim that you would do yourself a favor by speaking with the experts in various forms of radiation.

The only other comment i have to add is that incontinence especially, is not only not a sure thing, as Halbert said, but if you work with an experienced surgeon, the odds are very much with you that you will NOT be incontinent after surgery. Obviously, no guarantees there though.

Hi guys, I have a question for you on the incontinence thing. The robotic surgeons claim and some of you guys also indicated that in the hands of a good surgeon incontinence is unlikely., At least long-term. But in order to stay that way will the person need to do Keagle exercises, pelvic floor exercises the rest of their life? So I’m trying to understand how a robotic surgeon can claim such good results when the upper valve at the bottom of bladder is removed during surgery. Are they so skilled that they do not remove this or is it really the Keagle exercises that are the key to maintaining continence the rest of your life. Thanks and please let me know.

That is really good information. Thanks! My prostate is fairly small yet and normally I don’t have to take a P at night although often times since I only require about five hours of sleep I’ll wake up at 4:30 normally and have a desire to go but it’s not immediate. When I do have to go I sometimes will drip a little bit before I get it out if I don’t get to the bathroom soon enough. This is normally related to drinking excessive fluids (the alcoholic type) and having to go more frequently than otherwise. I really appreciate hearing this though.

M1... No matter what treatment you select I always recommend finding the best practitioner and team to deliver it. No question in my mind that the best can make a life altering difference. A guy has three urinary sphincters and two are lost to surgery. That loss leads to the urinary issues following surgery and why it’s important to strengthen the remaining sphincters with the exercises.
I’m an SBRT guy and my experience has created a personal bias. I chose that treatment because it had the highest success rate. The fact that it only required five radiation treatments was a bonus and made it very convenient. Although I focused on treatment success rate I have had no long term side effects except loss of ejaculate. My urinary function remains excellent and sexual function including strength of erection is the same as prior to treatment. My experience is a data point of one; but, I’m convinced my experience is pretty much the norm. If you don’t explore all the treatment options you maybe doing yourself a disservice.