Robotic surgery or radiation

[Paul8300]

I have just been diagnosed this week and scheduled for robotic surgery in 5 weeks. I am 57 active and enjoy a great sex life, versatile with my partner of 17 years. Lots of concerns at this stage and loads of questions. Hopefully you can assist with the first major decision robotic or radiation. Thanks. Paul

[BerkshireBear]

Paul,

The best thing you have going for you is that you currently have a great sex life. Everyone I've ever talked to tells me that the better shape your gear is in, the better the chances it will continue that way. BUT, this is the area of the great unknown, there's no standard answer or prediction for your future sexual abilities. The only one I'd tend to suggest is that your versatility will tend toward bottoming. The central issue is that we are all different internally, those essential nerves and vascular structures are sometimes so close to the prostate that they are virtually embedded in it and will suffer damage whatever treatment is chosen. For some other guys they are relatively distant and survive unscathed. If you choose surgery the doctor finds that out when he gets in there. (Marks' book tells this in detail.) That's a reason to choose a surgeon who has experience in the thousands, he'll have seen all variations and hopefully practiced enough to do his best for you. Absolutely make sure he knows you are gay and how important your sex life is -- so if he has to make decisions that information will guide him.

You already know, I hope, that ejaculate and the fun that comes with it will be gone. Some of us do leak a bit of lubricating fluid and some even a bit of urine, but it's just not the same. You guys say you're versatile, well, add inventive and creative to that -- you can adapt and still enjoy.

The guidance has generally been that ED will be a factor for most, and that the capabilities will gradually change over 1-2 years - it's a long process. In the surgery option the erections typically vanish but return gradually, with radiation they remain but gradually get weaker; BUT those are generalizations - I know individuals in both camps that were exactly the opposite. The technology in the radiation area is changing so fast that my experience (having IMGR 11 years ago) is not relevant. I followed the standard, but I'm 77 and I'm also following the erections and aging standard. Indeed, the refinements radiation tech are so rapid that statistics on what happens a year or two out are useless as the machines get modified and upgraded so rapidly. Do yourself a favor and go to a hospital/clinic that has a machine that's brand new or newly upgraded = avoid the old ones like the "new" one that was used for me 11 years ago (some are still in use out there).

Whatever you do before making a decision get second opinions from a different clinic, have your biopsy re-evaluated by one of the centers that specialize in that. Both should be covered by insurance. Get that second opinion at one of the centers of excellence for prostate cancer, so you get the most current knowledge and opinions.

[Tall_Allen]

Paul-

I would be happy to comment if you would provide the details of your diagnosis and any relevant comorbidities. I might know of some good doctors in your area if you mention where you are. Also, do you have any insurance restrictions that might be relevant?

[garydaniel in reply to Tall_Allen]

Paul, I can gladly vouch for Tall Allen since he was a great source of information in my decision process. If you have the luxury of time, take a deep breath and do some research. Allen was God sent for me in The summer of 2013 and was able to encourage me to research the options. He is very knowledgeable about current research in this area. I offer my best wishes in your search and hope that you sex life continues to be robust.

Best wishes

Paul D

[IMAT2B]

Paul: I'm sorry about your diagnosis -- I know it well because I've been there. It is easy to lose sight of what this is about -- you have cancer. Curing the cancer so you can live a long and productive life should be your first priority.

I certainly understand your concern about not forfeiting your active sex life. Begin by thoroughly discussing your concerns with your physician. Let him (her) know how important your sex life is to you. There may be medical reasons for selecting robotic over radiation. Beyond that you should have your post-operative plans in place -- plans for regaining control of your urine and, maybe, avoid ED.

My brother and I have both had prostate cancer. He had radiation pellets inserted and, although it was rough at the beginning, he seems to have regained most of his erectile function. I had a particularly bad cancer of the prostate and, upon the recommendation of my surgeon, had a robotic procedure. My cancer was cured, but I have nearly total ED.

I would rather have a functioning cock, but I am very pleased that I do not have cancer. Life is often a trade off -- good and bad. ED is bad . . . cancer is much, much worse.

I am no longer a top, but I am satisfied being a bottom. I am an active productive professional person. I can't ask much more of life.

Good luck, my friend. Keep us posted.

[tvankirk]

I had the robotic surgery at 56 and would never recommend it. I went to Mayo and the doctor was a hack. Got the cancer but his sloppy surgery left me with full ED. The doctors lie and sidestep the facts. If you have any sort of sex life after your treatment you'll be lucky. After having two follow up zero PSA's I've decided that I'm not having anymore followup cancer treatments or checkups. I wouldn't let Mayo touch me again with another medical procedure and I'm afraid if I did they would just make a bigger mess of me. The only thing worse for me now would be having to live the rest of my life in diapers. If I had the choice of a do over I'd just enjoy life and let the doctors practice their voodoo science on some other unsuspecting victim..... Good luck with your decision....

[Vitruviusman]

PAUL BERKSHIREBEAR HAS SUMMARIZED PERFECTLY. MY EXPERIENCE IS SIMILAR TO WHAT HE STATED. I AM POST 7 YEARS WITH THE ROBOTIC SURGERY. NO ERECTIONS NADA, ZILCH, ZERO. The only ED treatment that works is the injections. AND the head of your cock remains flaccid, only the 3 sides of the cock get hard with the tri-mix injections. Cock pumps are horrible. Being you have a husband, you are doing better than the rest of us who do not. Dating has been horrific experience. Once guys learn I cannot get erect, I am passed over, no matter how well I keep in physical shape. My concern for you would be to make sure you get a good surgeon who will not leave you incontinent as well as leave your anal canal in tact. I have heard from other men in the PC group, the surgeon "NICKED" the anal canal, and caused a slight performation. NOW one would have problems with this. I had no complications with my surgery at all, with the exception of no erections. The loneliness and isolation, I feel is worse than the surgery.

[koiboi]

As you can read everyone is different! I had robotic surgery 6.5 years ago at the age of 54. I am alive with no sign of cancer! Unfortunately, for years I regretted having the surgery but with my erections getting better it doesn't seem as bad as it did. My husband and I were very, very active and I was top 90% of the time. Needless to say he's learned (I've taught him!) To be a good top!!! And I've become a great bottom (as he says!!!) You will more than likely lose some length (which my surgeon never told me) and in my case gain alittle foreskin. It is what it is and you need to do what's right for you. If the cancer is not too aggresive at this point you may have a while to really think about your options and as someone already said treatments are different then when I had the surgery. Your life is taking a major turn no matter what you decide so enjoy your sexlife as long as you can. My heart is with you bud. Take care.

[Hidden]

Hi Paul,

These fine men have provided you with the most applicable information concerning your decision. I wish I had found them before I made the decision to have my surgery. In this journey of life, we can consider that cancer will be removed which is the good news. I'm one of the newbies on here, and I had the prostatectomy on Valentine's Day 2017. I, too, suffer from ED. No sex life to speak of other than masturbation, and I have to admit I've become quite obsessed with trying to get my erections back. I had asked the guys when can I have anal again on here and when I'm I supposed to be free of the pads. In my case, it's still a little early, but to me, I am getting better. Also for my sake, I have to come to the conclusion that I am not going to be the same as before. And that my friend is the ugly truth of the matter. You are blessed to have support. Everyone one of us has been dealt different outcomes from their process.

Good luck and God bless.

[Darryl Partner]

Hi Paul Great advice from the other guys here. Allen's suggestion that you post more details about your diagnosis will help us all be better helpers to you. Since you were diagnosed just two weeks ago, and surgery was suggested, I will (just for the sake of discussion) assume that your Gleason score was in the 7 (4+3) - 8 range. May I suggest that you (immediately) get a second opinion on your pathology . Which means, send your biopsy slides (all of them...not just the ones that were positive to another pathologist for a second opinion. According to a recent talk by well know pathologist Dr Epstein at Johns Hopkins ...aprox 15-20% of all prostate cancer pathology reports can be written up differently on second opinion. The pathology report guides your treatment choice, so it's critical to get as close to truth about your cancer as possible. More information and guidance on how to get a second opinion here: malecare.org/second-opinion...

[Paul8300]

Hi Everyone.

I have been very quiet but now have all the scores. I live in cape Town South Africa and I do realize that most people on here would be American, However it does not matter where we are, our common problem remains the same.

We have been monitoring my PSA for a number of years

2014 : 4.42 ng/ml

2015 : 12 odd at some point, we got it down with antibiotics

2016 : 5.15 ng/ml

2017 : 5.14 ng/ml and also 7.97 ng/ml

My Gleason Score now is 6

My prostate volume is approximately 55 mls or grams and the tumour volume is anticipated to be low.

The cancer is on the right side and nearer where it joins the urethra, it appears that there is no involvement near the bladder.

My Father had the same at 65 in 1994 and was butchered to get the cancer out and suffered from complete ED as well as incontinence till he passed at 81. The cancer had taken over his whole body.

My Urologist believe with the Family history we should rather remove it ASAP. I am seeing 2 other surgeons next week to get their opinions. It seems like Robotic Surgery has changed the whole ballgame and that no one really needs to suffer from ED or incontinence, however the secret seems who does the operation.

I don't quote know if I will cope with AS as I don't think I will be at ease knowing that the cancer is active. My biggest fear is not the surgery but to have ED etc at 58.

I appreciate anyone who takes the time to let me know their thoughts.

Take Care Paul

[Darryl Partner in reply to Paul8300]

Get a second opinion on your biopsy. American pathologists will look at your slides as will SA pathologists. Malecare has a gay prostate support group in sa called Cansir. Hook up with them

Do you know how many of your samples were positive? Did you have an MRI?

[Paul8300 in reply to Darryl]

Hi Darryl

Thanks for your reply. I did have an MRI and they did not pick up anything apart from some lymph nodes that was less that 1cm. They did 14 samples

It seems the right apex as well as the right body are the affected areas.

Hope that helps

[billd9946]

I was diagnosed several years ago and given the option of surgery or radiation seeds. I sought multiple opinions and ultimately decided on surgery. It was good that I did, because although I was told the cancer was confined to the prostate, surgery revealed that the cancer had escaped the capsule. I had one out of seven lymph nodes involved. If I understand correctly, you too have lymph node involvement? If this is the case, there's perhaps another consideration; retropubic prostatectomy versus robotic. My doctors at Hopkins recommended retroptopubic, given this surgery allows them to better see AND feel the area. They told me that my odds for getting all of the cancer were better if the surgeon could get in there with his own hands. Now it's 2 1/2 years later and my PSA is undetectable, though not zero. Incontinence totally subsided at four months, and I'm still working on the ED. I'm now having spontaneous erections on occasion in the morning. With Viagra I can achieve about 3/4s of what used to be, but hoping there is continued improvement. I'd say concentrate on getting rid of the cancer as your priority and approach the rest one day at a time. It's my opinion that no matter what, your sex life will be impacted to some extent. Better to accept that and move forward... just my two cents. Good luck in your decision and full cure!

[Paul8300 in reply to billd9946]

Hi billd Thanks so much for responding. I am seeing a surgeon in an hour and will certainly mention the retropubic prostectomy. I am delighted with your comment. Take care and so glad you are doing well.

[Bj1069]

Hi, Paul. There are other options that you might consider.3D guided focal interstitial stereotactic laser treatment removes the tumor(s) but not the prostate or the surrounding nerves. It's an outpatient procedure that can be repeated if new tumors occur, and unlike radiation or radical prostatectomy, it doesn't preclude the use of other treatments in the future. If you're a suitable candidate, it might be worth considering. I was diagnosed about the same time as you and given the same 2 options. But, since I want to preserve both urinary continence and sexual function, In getting evaluated for the laser ablation.

[EdinBmore]

Merely to echo everyone's notes to you: get a second opinion (or two); a medical oncologist may help to sort out the differing opinions.

You didn't say much about why RP vs. radiation. Urologists tend to recommend surgery (cuz that's what they do) while radiation oncologists tend to recommend radiation. One commentary noted that the radiation technology and meds associated with it have changed dramatically over the years; incredible improvements. I chose beam and seeds and am glad I did; relatively few side effects for me. Minimal ED and am taking tadalafil daily to minimize it (will also ask about pump).

Anyhoo, please take your time in making a decision. From what you've written, it does not sound like treatment is necessary immediately. And, yes, I agree re path slides to Hopkins. All of my biopsies were done there and Epstein is one of the best.

Good luck to you with whatever you decide. Read as much as you can, talk with more docs, get support from those around you, and understand that your life will be different.

EdinBaltimore