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Who here has had the DaVinci surgery and has had an issue with ED?

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Posted 12/10/2008 1:37 AM (GMT 0)
We have not done too much research yet but this is my husband's biggest fear. His Dr is telling him he should have the robotic surgery. My husband is saying "If that is what he wants me to do then that is what I am going to do" I want to look at all options and make the most educated decision we can. He doesn't think he could learn more than the Drs know. I appreciate your openness.
Posted 12/10/2008 2:00 AM (GMT 0)
My surgery was with the da Vinci robot. My doctor suggested the da Vinci option was best in my case. I have very little issue with ED. Sometimes I'm able to get a usable erection without any the aid of medication but sometimes it's only about 80%. If I take 1/2 of a 20mg Levitra, I'm able to get a solid erection for about the next 3 days. All things considered, I'm still early on in my recovery. I'm very happy with my outcome so far.
Posted 12/10/2008 10:50 AM (GMT 0)
Many doctors have little knowledge about ED -- so it's not hard to learn more about this than most doctors!

Surgery is a crap shoot -- some like Coxjajb have little ED, others have a lot. It greatly depends on the skill of the surgeon and your particular anatomy. Same with incontinence. I now have near complete ED, but do not find it a problem as injections now work well for me.

For anyone having surgery, I think it best to plan for a period of incontinence and ED -- that way you won't be disappointed.
Posted 12/10/2008 11:36 AM (GMT 0)

  I second what Piano just said........very well said!

Posted 12/10/2008 12:10 PM (GMT 0)
I too am very concerned about ED, as I'm sure most men are. I had DaVinci on Nov 3rd. so it's a little too soon for me to tell whether I will have issues or not. I am going back to the Dr's in 2days and that's when I start on medication to assist. I will let you know how it goes. When is his surgery?
Posted 12/10/2008 12:33 PM (GMT 0)

 as has been said a number of time on this site, we're all different when dealing with different SE's, some better some worse. On the ED front though, I think if not mistaken the sooner we or our Dr's start us on med's for ED the better the outcome. I started with the pump and viagra at day 11 post op....in less than twenty days good things were happening with a change to Levitra...although this wasn't a major concern, a concern yes. Just not my top priority...Cancer  gone first, control of my bladder second, then yeah get the little feller' back in the game too! I've been very blessed in this journey so far....and let me tell ya', this site has had and continues to have a very important bearing on this quest I find myself sharing with many a good man....

Posted 12/10/2008 1:10 PM (GMT 0)
Recovery from surgery does vary quite a bit, and as Piano said, expect some issues. I'm in the group of reasonable but slow recovery. A lot of my improvement started around the 9 month mark and at over a year I believe I'm still improving gradually.

Posted 12/10/2008 1:48 PM (GMT 0)

Dear Tra:

You might consider posting a signature with your hubbty's stats, e.g. Gleason, stage, age, PSA, etc...that will help members give you their best advice.

I understand your husband's concerns with ED, I'm sure all of us on this forum have that concern.  But, for me and I think most men I have spoken to re quality of life, the priorities are 1. Cure the cancer, 2. Normal urinary functions and 3. ED...in that order.

The other thing that I would strongly recommend is that you and your husband do lots of research and get multiple opinions.  Depending on his "stats" there are probably many good options for cure.  At the very least you should speak with an experienced (250+ procedure) robotic surgeon and an experienced radiation oncologist.

If you are interested in a seed journey, you can go to "Tudpock's Brachytherapy Journey" which I just updated since I had my procedure yesterday.

Good luck and let us know how you progress.

Posted 12/10/2008 2:18 PM (GMT 0)
First and foremost...do NOT and I repeat do NOT make your treatment selection based on the outcome of ED or incontinence. Your primary goal is to treat the cancer in the method that is best for you with the goal of a cure...leave the side effects to what they will be...short term or long term. Long term health is the goal, the rest can be dealt with accordingly... Just my opinion
Posted 12/10/2008 3:17 PM (GMT 0)
Dear Tra:

I concur with most of what's been already said on this thread. First, worry about the cancer, then continence, then ED. As for me, I'm a happy robotic surgery patient. My history was very little problem with incontinence (now totally over), with a gradual (and slow) improvement on ED issues over time. For me, the key is to have the help of a good surgeon who does a fairly high volume of the robotic RP's (my guy has a history of doing over 300 per year). Assuming he can spare both nerve bundles in the surgery, the ED is usually very likely to improve with assistance over time. As far as making the decision on alternatives, we spoke with people who had had other treatments, and found that continence and ED problems were pretty common there, too. From where I sit, having that "0" PSA is the goal, and everything else is just gravy.
Posted 12/10/2008 3:34 PM (GMT 0)

Tra96,

I am 9 months post op, DaVinci.  I have been 99% continent for the last 6 months but can't get over using 1 light pad (cut in half) a day just in case, never more.  ED is not a particular problem with 50-100 mg of Viagra. 

I must emphasize to you the importance I felt about the effort to cure the cancer. There are side effects from all the various methods and/or treatments of this disease but to me, curing the cancer was the most important.   

I wish you and your husband all the best in your decision making efforts.

Frank 

Posted 12/10/2008 5:26 PM (GMT 0)
I think it is important to note that ED results (at least from the literature) are not significantly different on average between the various radiation treatments and surgery. So, there seems to be no mainstream treatment available yet that 'guarantees' preserving this function. Different than leakage or bowel issues. Surgery is better for bowel issues, radiation is better for leakage issues.

I'm 6ws after DaVinci and the ED is still wait and see. some response, but no 'usable' erections yet. I can say that for me the recovery from the DaVinci surgery was pretty quick. After only a week, I was almost normal in terms of everyday activities, and only had the longer term side effects, i.e. some leakage and the ED, left.
Posted 12/10/2008 6:22 PM (GMT 0)
I am more than 6 months out from DiVinci. I had a wider cut because of my biopsy so I did not have nerve sparing. I just recently went dry - incontinence has been slight for 3 months, but I am grateful that just in the last week I have become dry.

As far as ED - I have no response down south, but do have all the same kinds of feelings, desires, etc.. The pump and injections work to some degree but are inconvenient. I continue to have hope there will be a return at some time. Regardless, I like others say the first priority is taking care of the cancer. Blessings to you!
Posted 12/10/2008 9:31 PM (GMT 0)
I had the surgery almost seven months ago and still have ED issues.  Pills work sometimes, I have not gotten to the shots as of yet.  Is it a pain in the ass, yes.  But it is SO much better than cancer.  I would much rather fight ED than cancer.  If I could do it all over again I would follow the same path.

Posted 12/11/2008 6:27 AM (GMT 0)
I'm 3-months post-op from the da Vinci procedure and though the incontenence is subsiding it's still an issue with me. ED isn't something I'm particularly worried about at this point - healing well is. I've had some but not much positive response when it comes to achieving an erection. We expect our physicians to have all of the answers, but they don't because each of our situations is different. Having confidence in your primary care physican and Urologist/Surgeon is important, and it's good to hear your husband is comfortable with the advice he's getting from them.
Posted 12/11/2008 1:09 PM (GMT 0)
Mavica, my husband had da Vinci surgery in March 2008. Of all the issues that he had to deal with from diagnosis through recovery from surgery, the ED area was the one that surprised me the most. I thought for sure he'd be raring to go once he got the all clear from his doctor...not so. He still is not able to achieve full erection and is reluctant to take the little blue pill with any regularity. He saw his surgeon for a check up about 2 weeks ago, and they discussed ED. Doctor told him it's pretty much a "use it or lose it" situation and that we just have to keep trying. I agree that the doctors don't really know much more than we do about this sensitive area, and just keep telling us that it will get better. However, our encouragement does help our husbands get past their fear and concern. We have no regrets choosing surgery over any other form of treatment. For my husband, the surgery was a success (Gleason score of 3+4 with miniscule capsular penetration and clean margins and seminal vesicles). His PSA reached 0.0 7 weeks post op and has remained there (thank God). While this is the most important medical aspect of the treatment, the ED (and occasional incontinence) are quality of life issues that each patient and partner must deal with individually. I wish you and your husband success, and a long and healthy life together.
Posted 12/11/2008 5:22 PM (GMT 0)
Many people worry about impotence most before surgery. However, it is the incontinence that is most people's main concern afterwards. It is much more limiting, and there are fewer options. That being said, ED is generally slower to resolve than incontinence post op.
Posted 12/11/2008 6:37 PM (GMT 0)
Before surgery, after I had come to grips with the big thing (i.e. survival), the hardest thing for me to accept was 'dry' orgasms. That was just insult on top of injury.

That, of course, was before I found out (after surgery) that I'd be a rubber wand and pee when stimulated and at orgasm <sigh>. You just take it one day at a time, and remind yourself that you're just glad to still be here.
Posted 12/12/2008 3:38 PM (GMT 0)
Well, just to add my story - 6+ months out from surgery, still use 1, maybe 2 pads a day - but the difference is I can do just about anything I want and still only use 1, maybe 2 pads a day.

ED - I probably had my first "O" 4-6 weeks after surgery. I'm getting about a 50-60% erection now, still not usable. I'm on Cialis twice a week and I have a pump - which I need to use more. I must admit, the incontinence thing has not inspired me to rush the ED thing. But I can see that I am making progress on both fronts. Whoever mentioned "used it or lose it" is probably correct. I was slow getting started on the ED thing which is probably why I am where I'm at.

One doctor told me (at the 6 week mark I think), "You are in the midst of a ONE YEAR recovery process. Work on it, but don't get too bent out of shape (ha-ha) about anything for the first year."

RBinCountry - Congrats on going dry.
Frank1205 - Thanks for the tip on half a pad. I might be trying that soon.

Tra96 - PCa is not the end of your sex life, but it WILL be different. My modestly educated impression is (somebody correct me if I am wrong) that IN GENERAL surgery leaves most men temporarily handicapped down below, with a good chance to improve (so the function goes from poor to good); radiation leaves men functioning OK at first, but then they might poop out later (so the function goes from good to poor). With every procedure and every man there are too many unknowns to be sure about anything.

Now that I have TOTALLY cleared that up for you, I wish you the best,
kcragman
Posted 12/14/2008 1:39 AM (GMT 0)

Dear Tra,

I'm having surgery on the 19th of Jan. and certainly all of these things have crossed my mind.. Cancer is Number 1, incontinence, 2, and ED,3.  I've been married 33 years to the love of my life and I figure if she went through a change of life, then so can I.  The male ego plays a huge role in this problem.  We are supposed to be strong, tough it out, walk it off,etc.

But the fact of the matter is to survive and that is what I think it boils down to.  Look for a support group in your area and I'm sure you will meet guys who have been, and are going through, this obstacle. The main focus should be on getting through this and living to tell  of the journey.

As I've said to many new posters, this is a great site for info.(as I'm sure you've figured out) and keep us informed as to what happens in the future.

Bob 


Posted 12/14/2008 2:43 AM (GMT 0)
Dear Tra,

I also am facing the davinci in a week, and have thought about the outlooks and consequences a whole lot. It boils down to the essential points of bob above. Survive: most men with prostate cancer have an excellent chance to live at least another 15 years. Incontinence: best to plan for several months of declining incontinence until it stops. Some men report near instant control though. ED. Expect a year of dealing with it. Some men report early recovery. At it's best, the man can feel near 100% of 'the old way' except for changes due to dry orgasms. But the truth is there is a real chance it will be permanent, though are a whole lot of options. With options, sex becomes less spontaneous, 'less than it was.' But other forms of intimacy can be learned, even enjoyed.

Good luck to you both!
Posted 12/14/2008 3:25 PM (GMT 0)
why do you say Gerbe, that most men live 15 years after prostate cancer...if you are only 50 that is not very long....if cancer removed, why short lifespan
Posted 12/14/2008 5:08 PM (GMT 0)
It's at least 15 years (like 90% still alive and kickin). The slight qualifier is because treatments are improving rapidly, and they haven't been able to follow men out for so many years afterwards for proof positive. The robotic procedure is less than a decade old, but all the early indicators (like positive margins after procedure and 5 year PSA recurrence) are very favorable.
Posted 12/14/2008 11:21 PM (GMT 0)
Reading all of this from mostly new surgical patients....I have to respond...Pete was worried about ED and incontinence, so he chose in 2001 external radiation and then seeds, lupron before and then on for another year... Thinking this was the least invasive....He was just beginning to get his libido back and also ED undercontrol, and the psa began to rise. That is when it all fell apart...
.He had salvage surgery....With the previous radiation, and the scar tissue, he did not heal properly and developed a fistula( connection between bladder and rectum) and then had to wear a catheter for a year, with another surgery to fix the fistula....This was all at Sloan Kettering, a very reputable hospital...he has been incontinent for two years...(totally), and then just had an AUS implant, artificial sphincter, which is not working b ecause of the scar tissue. We saw the doctor last week, and he said he couldnt do anything now, and to wait and see what happens. ....We also had a PSA test....We are waiting.... The main thing we have learned is: there are side effects to all...however, I think surgery first is more conducive to a better long lasting outcome without the dreadful side effects of radiation damage and then surgery...Saying all of this, I know that many that have had radiation continue to do very well, and that the cancer was killed... Our results underline the problem of RETURNING CANCER.....If you have surgery first, you can always have the radiaiton after...The other way around is very very difficult. Diane .
Posted 12/15/2008 12:22 AM (GMT 0)
Diane,

Your conclusion to your last post is exactly what my doctor/surgeon warned me about. I had toyed with the idea of radiation first, having been through radiation 8 years ago for another unrelated bout of cancer. He said that salvage surgery is very rough and uncertain.

David
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