Davinci Removal - No Regrets - lessons to share

I am eight months past the DaVinci procedure to remove my prostate and I have no regrets. I learned a few things during my journey that I wish I had read about when I was on this site seeking information when I leaned about my prostate cancer. I am here to share and hopefully make other’s journeys easier.

I was diagnosed with very early stage cancer eighteen months ago. First thing I learned was during the biopsy. They numb the area on the colon where the procedure occurs, but that is not where you feel it. In hind sight it makes complete sense, but at the time I was freaked out when it hurt on the end of my junk. It’s not bad – just an awkward surprise. I did my research about treatments and the proton beam therapy seemed right for me – comfortable, not too invasive and minimizing collateral damage. A major hospital in my city was building one to open in the spring of the next year, and I focused on that. My urologist was not impressed by the procedure, emphasizing that it was no more effective than other options. He did not care about my reasoning (comfortable, not too invasive and minimizing collateral damage), perhaps because his practice and associated hospital did not offer it. Second lesson – get a second opinion. I am sooooo glad I did, but that happened later. At my request, he did give me a referral to a practice associated with the other hospital; they verified that I was a candidate for the proton beam and referred me to that team for when they were open for business.

I stayed with my original urologist for the time being. Next step on the monitoring of my early stage cancer was the MRI and I had no problem with that. The results came back and my urologist was focused on the fact that I had bladder stones, and he can take of that. I read up on that and every line made me cringe. Next meeting, “don’t worry, you will be asleep.” I relented, and agreed to schedule it. Then he sprang it on me that he would need to go up and take a ‘look see’ first just to verify, and I would not be asleep for that. Says I – “you can tell me the size of these things, down to the centimeter. You need to verify?” “Yes.” He says, “I have to have a secondary verification before any procedure. We could do that with an ultrasound if you like.” Third lesson – there are options, you just have ask. Ultra sound and the procedure were scheduled.

And then my world changed. I woke up one morning and I could not pee. That had happened three times before and I found that if I moved around, had some coffee and even a hot bath, things eased up. Not this time. Emergency room, Foley catheter and they took out a liter and a half of urine. There was a big nurse dude in the room and I found out later he was there to hold me down if need be. He was not needed – trust me, if you can’t pee and have to, you can put up with anything. They sent me back to my urologist who announced that it was a spasm, removed the cath and as I was able to void, sent me home. Three days later I was back in the emergency room, this time with the hospital that was building the proton beam. Fourth lesson – there are options for catheter tips. The first time it was a blunt tube being shoved through an impacted prostate (pain of childbirth), this second time it was a twisted tip that gently worked its way through (not pleasant but not as bad).

Having been referred to that other urology group, I made an appointment to discuss. This time I was talking to a very different type of doctor. He is chief of both urology and non-invasive surgery at the hospital as well as being chair of urology at the medical school. He looked at my records and quickly identified a significant difference in prostate size from the biopsy to the MRI six months later. Three minutes digging into the MRI and he identified what my first urologist had missed – my prostate was not just getting larger and denser, it was growing an appendage up into my bladder. He gave me options – 1) he could go up through my junk and make things right, but probably have to do that again in a few years as it grows back, or 2) have the prostate removed with the DaVinci procedure. Knowing that there was cancer to address, bladder stones to remove and not wanting to live in fear of future impacted prostate issues it was easy for me to decide – remove the prostate. Up to that point I had been scared away by chances of long term incontinence or needs for self-catheterization, but that possibility was not as bad as the certainty I was living. Fifth lesson – do your research to find the best possible doctor.

I was shocked by how quickly I healed after the surgery. There were four small incisions spread out across my abdomen, and a smaller incision for drain tube. The surgery was over six hours (reconstructing the bladder and repairing an umbilical hernia), and I was sent home the next day after they got me up and walking. They tell you about Keagle exercises to strengthen the pelvic floor muscles that need to replace the bladder control muscles that are removed with the prostate – do them! I wore a catheter for a week post-surgery, and within a week after that was removed I gave up the big boy pull-ups for pads, and within three weeks I no longer needed the pads.

I bet most guys avoid prostate removal because of the fear of no more sex; I know that had been a concern of mine. Things are different – the prostate controls ejaculation and that will never happen again. My junk is smaller – the urethra goes through the prostate; they cut it above and below the prostate and stretch the urethra up to reattach it to the bladder. That length has to come from somewhere. The little blue pill can create an erection (I was prescribed a small dose of this daily after the operation to help blood vessels reattach). Sixth lesson to share – you can still have an orgasm; it’s different and better. It’s called a dry orgasm and it’s great. With a prostate, ejaculation ends it; without a prostate, it goes on and on and on.

One of the few hopeful comments I read last year when I was here was a short one: “Guys, I am six months out from having the prostate removed. It is all good! Hang in there!” At eight months out, I agree. If you are here looking for answers, I hope my sharing has helped. I wish you all the best for the solutions that work for you.

NoRegrets,
Thanks for posting your experiences.

Great first post, thanks for sharing your experience, and welcome to Healingwell .
It would be great if you stuck around to help the new guys that show up here with their hair on fire.
It felt good for me at least, to be able to give back, after my experience by helping the newbies.

NoRegrets,

Thanks for your story. I can certainly see why, with the weird things your prostate was doing, along with the bladder stones, that you went with surgery.

Please stick around and share your story again going forward. I'm glad to see that I'm not the only surgery guy here with no regrets. (I know there are more.....)

Glad you've had such a positive outcome...and such a positive outlook on the whole thing.

Like Halbert, I too, have no regrets. As it happens, I needed SRT, but I made the right decision for me at the time. As Halbert said, there are more of us, it’s not all doom and gloom. A good, experienced surgeon, combined with a bit of good luck, and life can be good after surgery.

Your junk will grow back to normal size after about 2 years out. Everything stretches back to normal.

"Your junk will grow back to normal size after about 2 years out. Everything stretches back to normal."

I wouldn't be too sure about that.

NR, Thanks for a great post. I am usually set against RP, based on reading many, many posts from men who (1) were rushed into surgery by one urologist; and/or (2) had really disruptive long term side effects.

You, on the other hand, had an optimal experience. Still doesn't much change my attitude that other treatments are equal or better with results, while less damaging. But does increase my appreciation that some men really did well, and have no regrets after RP.

Best wishes for your continued good heath.

"The fact remains that surgery is likely the primary treatment modality world-wide, which means that there are a lot of success stories. It would be nice to be able to say so without the snide responses."

There certainly are good outcomes with surgery. Providing balance to what appears to be a statement of fact that certainly isn't a fact, hardly seems snide to me.

FranPro said...
I am 99.8% dry all the time. I used two diapers and no pads post surgery. I owe that to doing the work. I stopped doing them after surgery and started to drip at 3+ months post, so I have started doing them again.

That's great. I started the exercises right away and didn't see much improvement. I was at 5 pads/day, more if I was crawling under the old cars or doing plumbing work.

At 6 months post-RALP I got a referral to a pelvic floor specialist and went through 3 months of PT. I saw no change even though I felt like I to use those muscles in a weight lifting competition if I could grab on to something.

I asked the urologist why and she suggested that everyones anatomy is different and there is really no way to predict who will have the problem or not, if there was, they would use that in counseling patients as to the best course of treatment.

So, at 12 months out I decided to get an AMS 800 which was installed 11 days ago. It's just the way it is and I'm not regretful or bitter or looking for someone to blame. I just wanted to get it fixed and get on with life.

FranPro said...
As for the ED. We are never fully prepared for the reality of what surgery will do to you, both physically a mentally. It's a low blow to say the least, but it beats dying. I just turned 58 and things worked pretty darn good prior to RALP. Now, not so good.

I acknowledged going in that ED might be an issue since it was far from 100% going in. I just figured that I'd work with what I have and, heck, it's not like I'm 16 anymore nor is the demands for services an issue.

FranPro said...
The mental side of prostate cancer is the worst part by far. The anxiety of not knowing what is next is terrible. I am sure it will get better as time goes on. Hey on an up-note, I only have a 10% chance PC will kill me in the next 10 years. That's better than the chance of being shot and killed in Chicago on any given day.

Well-said. Living in Montana I don't have that kind of risk but I see this whole adventure as just like finding that pavement runs out and it's a gravel road ahead. That doesn't mean I won't get back to pavement again nor am I going to turn around.

Mumbo, twenty year long AS studies at both Johns Hopkins and at Sunnybrook have shown that men who choose AS, whether they later have treatment or not, have no additional mortality risk versus men who choose immediate surgery.

Fine post No Regrets, and spot on. I too had surgery, at 72, without issue. It was easy.

Good try Halbert. There really is no good reason, IMO, for some to repeatedly discount positive surgery outcomes and inflame doubt when some brothers announce they have chosen surgery.

I've also had SRT radiation, coupled with hormones, and it was no picnic, with complex long term risks. I urge bothers to do detailed research (there is a wealth of credible data and studies at your disposal) to choice the form of therapy YOU are most comfortable with. Give one-off anecdotal stories the weight they deserve, and good luck to all.

I fail to see where in the thread there was great discontent expressed towards surgery. Everything seemed pretty civil and fair to me.