newly here, newly diagnosed, with velocity

Halbert & Mumbo thanks for your insights -- Mumbo I'm pretty sure you didn't mean you urinated & stopped mid-stream in the car while running errands, but just wanted to clarify & understand the vessel employed if that's how you roll. And Halbert I read through your whole saga. Invaluable to see your story with the daily minutia. Thanks for writing it all down & sharing your experience.

Who will play you in the movie adaptation?

I'm reasonably fit but I've been lazy through the Covid-times & just turned 65 so I'm losing my boyish figure. I'm taking both your advice & trying to get some core strength built back with ab work, kegels, and basic cardio. And grabbing a few last rides on my unicycle-- likely won't be doing that for quite a while after the 22nd.

Yes I have an awesome recliner and will decorate it with a drip-proof seat-liner.

I also have a super-hero of a wife who is game to take care of me & she's even been researching "penile rehabilitation." I'm very very lucky in that department.

cheers,

nels

Nels: The absolute requirements: On the table next to the recliner, enough space for your water mug (the big 2 liter mug you get at the hospital), the remote, and your book. A small bucket next to the chair to hold the catheter bag.

I'll note something my surgeon put in his post-op instruction letter: To the effect that the best way to rehab a post surgery male part is to have a willing female part available. Even if things are only partially getting there---having that sort of help is a great thing.

I'll second Mumbo: learn how to do kegals, and do them. I also note that most surgeons these days will give a scrip for Viagra or Cialis to start once the catheter comes out. If he doesn't offer, ask for it. It helps overall pelvic healing by increasing blood flow to the damaged region.

Nels,
You posted this earlier:

"I'm a reasonably fit 65 y.o. and I'd rather have the big invasive intervention now, which I slowly recover from (hopefully with a skilled surgeon I'll get right back to baseline) as opposed to the more moderate up-front SE suite from Proton beam RT with its (possible? / likely?) slow onset of worsening continence & ED issues... And the capper is -- if I need salvage surgery after RT, it seems likely I'd be likely to have much more negative SE impact."

To me that kinda sounds like a surgeon's selling point words. Do you mind my asking if anything else tipped you towards surgery?

As far as recovering from surgery, the absolute worst part for me was the gas used to pump up the abdomen to facilitate the surgery. A few days after the catheter came out I was back at work. Of course, I was only 55 at the time.

Good luck with your procedure!

Mattam -- Thanks for the heads-up on the CO2. A new form of gassy discomfort. I'm glad you've made it through your PCa journey thus far and are sticking around to guide newbies like myself.

I hear you on the sales-pitch vibe but it's just me, aiming to convince myself with my own synopsis.

After talking to two ROs I really was inclined towards the RT approach, particularly proton beam b/c of the purported accuracy. But in studying the RT variants, I kept seeing this word "ablation." In surgery this equates to "removal." In RT / Cryo / HIFU it simply means "destruction of tissues."

I'm a visual person and I couldn't escape the image of baking my prostate into a leathery hacky-sack and leaving it in there.

Of the 3 surgeons I met with, one turned me off b/c he was really pitching HIFU (he's involved in a clinical study); the second was very sharp & talented but unacceptably young, who thankfully was gracious & supportive about referring me to surgeon #3, his senior colleague, the esteemed Igor Frank MD.

In the course of my consult with Dr. Frank I asked about his experience with salvage surgery after RT, he said that it is far more difficult than primary treatment because you're basically "working with a ball of scar tissue."

That hacky-sack again...

Another factor for me is my "other cancer." In 2010 I had a fast-growing oropharyngeal tumor under the base of my tongue, excised @ Mayo by another esteemed surgeon who had been innovating the use of Da Vinci systems for trans-oral surgeries, getting down deep in the gullet. He got negative margins despite my tumor's proximity to my hyoid bone, and with my negative neck dissection he was confident that I did not need any adjuvant treatment.

Five years later, just as I was declared "clear", a good friend of mine had a very similar diagnosis but was a bit more advanced. After his excision he had to endure a grueling adjuvant RT course and spent many months recovering from the SEs. He's good now, but he's got permanent damage, more from the RT than the excision.

I was lucky with my circumstances & with landing that particular ENT surgeon. I wound up with modest nerve damage, some temporary, some permanent (crooked smile.) So I guess I'm predisposed to trust surgeons -- in particular if I have a skilled surgeon.

My wife has been my rock through everything, and she did quite a bit of her own additional research as I considered my PCa treatment options. Honestly I probably could have swung the other way & gone with Proton Beam / Hacky-Sack if that's what she believed was best, but she was laser-focused on the optimal oncological outcome, and for her surgery won by a nose. We both like the immediate situational awareness that comes with surgery, and we decided the more palatable order of events if I needed salvage treatment would be surgery first, RT later.

I'm blessed to have all these various extraordinary treatment options available to me. Another comment from Dr. Frank echoed sentiments I've seen here on HW: he noted I'm right smack in the diagnostic zone where I have *all* the options, which can make the decision harder.

It helps that Dr Frank has a warm yet studious manner which gave my wife & I a solid level of confidence. So I'm putting myself, literally, in his hands...

nels

Maybe you can’t. Email is [email protected]

I had my sp-RALP yesterday with Dr. Frank. He says the single-port machine enables him to do a less invasive retzius-sparing "Hood Technique" and my impression is that it is he's very good at it.

I was in the OR less than 3 hours. about 2 hours after waking up I was woozily wobbling around the ward leaning on a wheeled "lectern" walker, catheter bag swinging from a hook by my knee. Drank a lot of water all afternoon, then was approved for solid food; had a light veggie pasta dinner.

I have a vertical bandage the size of a business card just under my navel; another one horizontal a few inches down & to the right. Surprisingly small wounds.

Pain management has been 1000mg Tylenol every 6 hrs with a bump of 5mg oxicodone every 4-6 hours, now stretching to 8. Tylenol dose goes to 1/2 this evening, and I'm feeling like I'll be okay without the opiates tomorrow, but we'll see if that is over-ambitious.

All surprisingly smooth so far. Biggest surprise of the experience was waking up, morning after surgery, with a half-mast morning woodie straining painfully against the damn silicone catheter. Hello!

I was released from the hospital before lunch and am wandering around my hotel hallways supervised by my wife but without assistance for ten minutes every few hours, leg bag sloshing under my sweats. I even went down the stairs 4 flights but the catheter was too uncomfortable to march back up.

Seeing Dr Frank Tuesday 27th to get the pathology & margins report. He says he'll pull the catheter then, which seems mighty quick but at this point I simply believe he's a magician.

nels

Nels, you may hold the record for the fastest reported woodie after surgery on this forum. And that is a good sign. Be really careful with the catheter, there are stories of what happens if you trip over the tube, and none of them sound good.

Keep up the walking and the fluids. If you can, stay away from the opiates. Take your fiber supplement, in a day or 2 your gut will wake up and the first dump will happen. Also a good day. I had staples, and they came out the same time the catheter did. Oh, when you go for the catheter pull, have at least a full size pad to put on...you may leak for a while. Or, maybe not. Be prepared.

I think what I remember the most is how long it actually took to recuperate. It really does take a while.

Latex caulk. Ha! At least you've kept your sense of humor.

Seriously, it sounds like you're doing great. I was fortunate that I never had a bladder spasm. Keep up what you're doing. Getting off the oxy is the best choice if you can make it work.

At least it's summer and going outside is possible. I had mine in mid-February, and we had a blizzard the day after I got home. I don't think I left the house at all, after getting home from the hospital 24 hours after surgery, for at least 4-5 days. And then it was a trip to Home Depot to just push a cart around for a half hour and then home for a nap.

halbert I'd wager the surgical techniques have evolved substantially since your RALP 8 yrs ago -- I'm amazed at the progress I'm making compared to what I expected. Anybody else contemplating the surgery-vs-radiation decision needs to know that sp-RALP has truly become "minimally invasive."

It's balmy in Rochester so I can wobble around outside. The friction of the catheter tugging inside the tip of my wongle is the only deterrent to longer walks. I need an auto-oiler down there, like in a chainsaw, to keep things greased.

I shifted to nappy-briefs yesterday b/c of intermittent leakage around the cath, but discovered they keep the upper catheter tube pinned to my groin which reduces the tugging / movement & therefore lessens the spasms & leaks.

And man, the gales of flatulence coming from my rumbling gastro tract... after feeling so uncomfortably bloated it's a pure feeling of bliss unloosing those long triumphant bugles of relief. Avoiding open flames!

I am continuing to OD on fluids, mostly water but I wish tart cherry juice wasn't so pricey, tastes sooo good right now. Mighty convenient not needing to get up outa bed to pee at night, but I really am looking forward to Tuesday a.m. when I get the damn hose pulled out. I just hope I pass the first-pee test so it doesn't have to get stuffed back in...

The nurse doing my removal thought she was starting a lawnmower to get it over quick. It burned a little when a peeing for the first couple of times. Not sure there is a right answer, like pulling a bandage off.

nels - every person has a different experience so don't be too quick to conclude that the minimally invasive surgery is painless and over in a week for everyone. The procedure is not that much different now then when I had it with multiple ports. They still invert you, pump you full of CO2, and take a while to complete the surgery. Some of the nuances are different is about it.

There are two ways to fail the "pee test", you don't pee there or you can't stop peeing when you get home. Hopefully, it will be a win, win, for you.

Nels, there are horror stories out there of men who tripped over the catheter and pulled it out without the internal bulb being deflated first. Not something any one would care to experience voluntarily.

Mine, he had me stand up, he deflated the balloon then told me to take a deep breath and breathe out slowly as I counted to ten. I heard it hit the floor and that was it. No real irritation at all.

Regardless, it sounds like you're doing fine. Just be careful and don't overdo because you feel good. You have had major surgery. Don't be surprised if you feel weird pangs in your lower gut for a while. All the parts need to adjust to the fact that the prostate isn't there anymore.

Next step: many surgeons do a PSA at 6 weeks to see what the trend is. If yours does, don't be shocked if your PSA is still detectable. The definitive reading is at 3 months post surgery. That one should be non detectable.

One of those things that I forgot to pay close attention to is, once we have our prostate removed we have increased risk for hernia’s. about 18 months after surgery I was cutting up a downed tree, and I picked up a log and casually flipped it to the side. I felt an odd twinge in the groin area, and it wasn’t too much later that I underwent surgery for hernia repair. I still use the chainsaw, but I am much more careful picking up logs.

Enjoy the mallards.
Michael