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Made my final decision to have da vinci surgery on April 9, 2012. Went with a doc who has done over 400 of them in the last 4+ years (and over 2000 prostate removal surgeries). Nerve sparing experience was important ( I am 46 years old) and he seemed to fit the bill. He is head of urological surgery at Washington University here in St. Louis so I feel comfortable. I am going in to meet with him one on one (without wife but with her blessing). What questions should I ask? I am already practicing kegels (have been for a couple weeks) and I am planning on asking about low dose viagra, cialis, levitra for a couple weeks before and then immediately after in order to help rocover potency (hopefully). Also, from you members out there that have gone through this: What can I expect comfort wise? Am I going to be sitting on my tush most of the day for a week or two with a catheter hanging from me or should I be planning to be up and moving a lot or will I feel like it? Can I sleep in my own bed with a catheter or am I going to be up every hour for the time it is in just trying to stay comfortable? How uncomfortable is it going to be trying to go #2 with a catheter in me or will I be on a liquid diet the entire time? Lots of questions - looking for the "post surgery" comfort levels. Purposely made it for beginning of April as baseball will be on every day and hockey playoffs in full force too. If any of want to play Words with Friends, my schedule will be quite open around then!
Assuming nothing unusual happens:
day 1 operation - drugged up, feel pretty good considering
day 2 leave hospital - maybe death was a better choice
day 3 at home - not feeling too bad but the catheter is a pain whenever you move and it takes 2 hours to get catheter taken care of and you dressed in morning. You move in slow motion because you will experience pain if you are not careful. Get a pair of "tear off" track pants to wear during this week.
day 7 - catheter out (you can check to see if they will let your wife do this so you don't have to go for a car ride). Quality of life improves greatly
day 21 - can take short flights for business meetings but will still tire easily for the next 6 months.
Try to do regular walking but DON'T over do it or you will pay for it the next day. Your body will over react during this time to any excessive activity.
David,
Please take Terry's advice and compare the experiences for each treatment. I am currently taking proton beam at Loma Linda. Now MD Anderson does it, and Mayo is building 2 proton centers. I have a good friend who had da vinci from a surgeon who has done 5,000. He has to give himself a shot in the penis to have sex, and he leaks urine. Sorry to be so blunt, but this is important for you. You are too young to have your quality of life potentially destroyed. Compare the proton experiences with da Vinci, and you will see what I mean. Also, there are other modalities you should consider that have less side effects also.
David, I know what it is like to have to make a decision on what path to take. I had open surgery so my experience is a little different. My cancer was not confined so the recovery was a little longer. I spent two nights in the hospital, coming home was difficult and I spent most of the next two weeks in bed. The catheter was not that big of a deal although an inconvenience. I did experience back pain and urinated frequently at night after the catheter was taken out. But I was happy that I had urinary control. Two months after surgery I went on a family trip to Europe and things were fine until I rode a bike and drank a lot of beer. I was pretty soar for a week. So even if you feel fine take it easy for longer than I did. Now I have no incontinence and erections were starting to come back. Although this probably won't relate to you, my PSA is going up and I am do to get salvage therapy. This might pertain to you. I had to make a decision whether to get proton or photon therapy for salvage therapy. I have decided on going to UCLA and having photon therapy. Many people out there seem to push proton therapy to the point I feel they are selling that treatment. You did your research made your decision so don't agonize over horror stories that you hear about your choice. Good luck
As you probably every one has different experiences. I had open surgery in 2009 and spent two nights in the hospital. I was up and walking the entire floor the second day will no significant pain. After getting home, one of the first things I had to do was climb the stairs to go to bed. A little uncomfortable, but I never had to take any pain medicine. I think the stairs help with the healing, so don't be afraid of walking and climbing stairs. Sleeping was not comfortable because I couldn't turn over with the catheter. I suggest you hook the bag over a 5 gallon bucket at night to keep it upright. I found a pair of large sweatpants was sufficient and shortened the catheter tubing on the leg bag to make it more comfortable. The catheter did not keep me from doing things although my wife made sure I didn't lift anything heavy. You'll definitely want to avoid strenous activity for the full six weeks. I have a desk job so I was back to work after three weeks.
Just remember every one is different. I chair our local support group and I have not heard of anyone having serious problems, so don't worry. Good luck.
Thank you all for your comments. Sam: I am at peace with my decision because it pertains to me - and only me. I looked seriously at radiation options including proton, brachy, IMRT, etc. but it really came down to putting this behind me as quickly as possible and the overriding factor was what would give me the best first option. I would've preferred other than surgery but surgery has the longest term track record and since I am young, that was the most important factor in this. My wife and family fully support my decision. My mom was impressed that I would take this route - she did her own research and came to the same conclusion but did not say anything until I had made my decision clear. My dad just squirms when we talk about it but he told me he would have taken the least invasive route! He is also 72 years old and I am sure that changes the picture. Frank: No way in hell my wife will take out the catheter! I showed her your comment and I think she turned as purple as I expect my junk to look through this ordeal. I do think it will be a curiosity for her in the weeks to come (pun intended). Bruce and Wendell: thank you for your input as to what I can expect after surgery. Fortunately (or not), I own my own business and my boss says I can take as much time as I need! :>) My dad will jump in and keep things running - of course we are moving the office in July so I have other things on my plate and a reason to get back to health as quickly as possible. I expect to be a basket case the night before and the morning of surgery. Once the anesthesia kicks in, I will be the last to know anything for a while. After I wake up, that's when my job begins. That's the only way I can look at it - knowing once the surgery is over, it's all up to me in recovery. Terry: I did look at the experiences and that did help b/c I noticed that the fewest instances of recurrence occurred with those in my age bracket having had surgery but I am curious these days on whether the "use it or lose it" method seems to be working and whether or not anyone who has had surgery practiced kegels before surgery and if they think that helped afterwards.
David, I did Kegel exercises for about a month after surgery. I did not do any prior. I have no problems now. Keep in mind I am 61 and very physically fit which may explain my success. Glad you were able to filter through all the different opinions.
Re: da vinci surgery (kegel exercises before surgery)
Hi David,
There is a guy named Danny Staggs who can be reached at pngunme@gmail.com. He is a very helpful guy & I remember reading some information about Kegel exercises before surgery that he posted on this forum a while back. I know that he would be more than happy to assist you. (I am writing about Danny instead of waiting for him to reply on his own because I haven't seen him post for awhile, & I really think you can benefit from his experience).
David,
Just a couple of additions, what you may encounter. In my case I felt quite bloated for a couple days after the surgery and had difficulty getting a bowel movement. People told me to eat more, but being so bloated it just didn't seem right. I quit the pain meds on the next day after surgery to help with that. I've never had bowel issues, but I wasn't moving it for two days after the surgery. They want a good fart before they let you leave the hospital though. And my balls and penis were totally bright purple a couple days after the surgery. I had no significant catheter problems except you need to keep it lubricated where it exits the penis.
Kegels are a big help, it took me a couple of months to get full continence but you'll be faster because of starting them sooner. Of course you will take some time to fully recover, but just start working yourself back into shape as soon as you feel right about that.
Bill
Thanks Bill: I just sort of assumed I would be on a mostly liquid diet for the week I am in a catheter. I know they will give me stool softeners to help with bowel movements but I figure if I am just on liquids, that might keep my pain to a minimum. I can't imagine how I might even fit on the toilet (comfortably) let alone attempt to push with any force. I guess I will find out in April!
Take stool softeners for about a month. I stopped after a few weeks and it was a big mistake. Place a kleenix or toilet paper under the tip of your penis for bowel movements at first. Walk a lot to get rid of gas. You may experience no post surgery pain at all other than some gas pain early on - but you should probably take a little nap or lie down mid afternoon for a while as you tend to run out of steam. April is a great choice as you can recuperate in the improving weather. Get a bunch of books to read beforehand. That really helps. I treated it like a kind of vacation. Good luck.
Every Urologist and Surgeon has a different opinion on how to perform Kegel. Some will say do it at every opportunity you get, while shaving, driving etc. I went for PT and bio feedback to make sure I was doing it right. The physical therapist Says it important not to overdo, only exercise twice a day for about 5-6 mins.
Dr. Patrick Walsh in his book says only do Kegel when urinating. So as you can see everything about Prostate cancer is confusing. Why can't we get a straight answer?
Re: da vinci surgery (bowel movements - pre-and post surgery advice)
On the subject of bowel movements, Dr. Patrick Walsh of Johns Hopkins has this to say: the return of normal bowel movements happens much faster and with fewer complications if the bowels are empty when you undergo surgery. To help with this, he gives the following pre-and post surgery advice.
Before surgery, you should be sure that your bowels are moving well for about two weeks before the operation. To help with this, he recommends that you increase your daily intake of fiber, fruit, and liquids. He says that, if necessary, you should take a stool softener, or talk to your doctor about using a bulk laxative. During the day before surgery, you should stick to clear liquids. Then, on the night before surgery, take a laxative and don't eat anything after midnight. On the morning before surgery, give yourself an enema.
After you leave the hospital, the main thing is that you avoid becoming constipated. He talks about how it is essential that you have a bowel movement every day, but recognizes that for many men, this is easier said than done. He says to help keep things moving, you will probably be given stool softeners or laxatives for several days. He recommends mineral oil and milk of magnesia** if you do become constipated, and warns against using an enema because it could perforate your rectum. (This is because the prostate sits on top of the rectum, and when it's removed, this part of the rectum is thin, fragile, and particularly vulnerable to injury for the first three months after surgery).
**I wonder if his milk of magnesia recommendation was written before the days of OTC Miralax. This is what I was given prior to my colonoscopy, and it worked very well. My gastroenterologist recommended it to help with occasional constipation as well. Unfortunately, I had an allergic reaction to it so I was not able to continue to use it. Nothing I've tried since has worked as well.
Personally, when my time for surgery comes, this has the potential to be a problem for me because I am constantly struggling with maintaining my regularity. If I am stressed, anxious, or my daily routine is disrupted, my bowels do not move (and I can see where surgery would cause all of those things to happen). I'm currently taking the maximum dose of a fiber laxative, a probiotic capsule and two stool softeners a day, but still have problems. I have consulted with my gastroenterologist, and expressed my concerns about the surgery, but all he could say is that we will deal with it when the time comes since there is nothing physically wrong with me (not a great comfort). If any readers out there can identify with my condition and have successfully dealt with it, I would appreciate hearing your advice. You can reach me on the forum or e-mail me at alhst1cpc625@comcast.net. In the meantime, I hope this post helps David and anyone else preparing for surgery.
Re: da vinci surgery (bowel movements - pre-and post surgery advice)
Before I had my HDR Braccytherapy I had to empty my bowels, after the procedure was finished I was quite constipated, my wife, an exercise consultant for pregnancy simmered some flaxseed in a little water for me, 24 hours later whoosh, all done and easy.
Worth a try.
Re: da vinci surgery (bowel movements - pre-and post surgery advice)
Thank you Warwick for the information. I definitely think it is worth a try, but I'm going to need your wife's "recipe". In other words, could you find out from her what the ratio of flaxseed to water is so that I can prepare it correctly? Also, are there any other ingredients that need to be added to the mix? Lastly, I am not a cook, so I need to know what "simmered" means in terms of how long it is on the stove and at what temperature.
Also, when I have a really satisfying bowel movement that could be described as a "whoosh", in that it seems to clear out my system, I tend to be constipated again before my next movement. So, my question to you is did your wife's concoction help you to not only get, but also stay regular? In other words, did you use her recipe only once, or did you have to use it several times in order to achieve and maintain regularity?
Once I have your wife's recipe, I will try it out the next time I would otherwise reach for milk of magnesia. It makes sense to me to test it now, rather than wait until after surgery, just in case it does not work for me. I appreciate your help, and I will let you know how it works out.
Re: da vinci surgery (bowel movements - pre-and post surgery advice)
two tablespoons of linseed/flaxseed, one cup, 250ml, of water, bring to a simmer, slow boil, and wait until it becomes a grayish glutinous mass, let it cool and consume the lot, it is quite tasteless. Do this every day or second day and you will empty out without difficulty, I know I did!
I had my Surgery on 2/7/2012 Not much pain, had a difficult time with #2 as you put it. I am still taking 2 stool softners a day. Drink a large glass of water in the morning and then a cup of Hot Decaf. Tea have light breakfast than walk around the house till you get the urge. Try to walk 6-7 times a day. Every doctor and book seems to recommend a different way to do KEGEL, I do 2 sets of quick flicks 10times, then do 10 second holds 10 times then 2 sets of 30 second holds. 2 times a day, thats a total of 84. Some books tell you to do hundreds. My P/T says this is wrong. Well good luck. Let me know how you make out and if you have any questions I'll try to give you my opinion and what I have learned. Phil k
