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Posted 6/26/2023 10:41 PM (GMT 0)
Nels, sounds like you are doing great, all things considered, glad you have this part behind you. Tuesday, getting out the catheter, is a day you will remember in detail, for a long time. Bring a diaper or two to the appointment, just in case. And good luck on the pathology

Oh, and congrats on the super quick woody.
Posted 6/27/2023 12:09 AM (GMT 0)
Nels, it wasn’t at an incision site, happy to say. And in the last three months I have begun working out with weights. Nothing major but it has been nice to spend 35-40 minutes thee or four days a week. That has helped me lose some lupron weight.
Michael
Posted 6/27/2023 12:44 AM (GMT 0)
Nels,

It sounds like you are recovering well. I am sorry we never got our conversation in before hand. We went to Florida to look for a new place to live and things have not stopped spinning since.

Congrats on the light leaking, hopefully they can pull the tube tomorrow with no remaining issues.

Great news about the wood as well.

Keep walking and off the codeine.

Larry
Posted 6/27/2023 1:16 AM (GMT 0)
nels - I had robotic hernia surgery approx two years after surgery and it was fast and easy compared to RALP. It was an inguinal hernia that my surgeon said was congenital and not directly related to the prostate surgery. That being said, the statistics are pretty clear that hernias occur at a much higher rate after prostate surgery and is also higher after radiation treatments, go figure. No need to tempt fate by pushing too hard too early.
Posted 6/28/2023 2:08 AM (GMT 0)
Mumbo - noted on the hernia risk. I'll make sure to refrain from casual log tossing etc. as per Michael's misfortune. I've got a new gun safe sitting in my garage that will need to continue sitting there for several months before getting humped into the house. And even then, preferably by somebody else.

Got the catheter pulled out today, was painless & uneventful. They pumped 100ml in, I voided 220ml out into their little receptacle, then downed a pint of water.

20 mins later I was standing over a urinal, looking down at the freshly untethered guy, and exclaimed:

"European!"
Posted 6/29/2023 12:08 AM (GMT 0)
Nels,

It sounds like you're well on your way to trifecta. In case you didn't know, trifecta means cancer control, continent, and no ED.

Yeah, I'd stay away from log tossing for a bit.

https://www.youtube.com/watch?v=zvvsrkwfsvq
Posted 6/29/2023 1:32 AM (GMT 0)
Thanks halbert. I'll pass on competing in this year's Caber Toss championship & hope for a Post-RALP trifecta.

I'm feeling pretty good but I'll take it as it comes. Still trying to reconnect with the bladder, squinching the kegels etc. several times a day. I'm finding that I can control a pre-emptive pee, but if I get too full I seem to just quietly piddle in my nappy, without even noticing I need to go.

So I've set alarms on my watch -- depending on my activity & how much I'm (over-)hydrating I do about 45 mins, get semi-full, then I can go do a deliberate piss. Seems to help minimize the dribs.

I'm drinking lots of water but also wondering what the consensus is on beverages to moderate or avoid. I dearly love my craft beers but figure that all alcohol should be kept to a minimum or abstain for now. Brewed coffee can be a bladder irritant for me, but cold brew seems less so. Need my caffeine in the a.m...

Tomorrow flying back to California. Not looking forward to being cooped up on a plane. Or to going thru the scanner with a damp diaper on under my trousers.

Still no pathology report; I'll post the findings when I get them.
Posted 6/29/2023 1:41 PM (GMT 0)
Nels, here’s hoping that your flight is uneventful. After my surgery it was pretty much water, and day 3 I began my morning cup of coffee. All in all it sounds like you are doing well. FYI, after my log tossing tragedy I purchased a two wheel hand truck. And I can’t remember what we called those things back in 1963 when my second job was as a stock boy at a department store in OKC. Anyway, I don’t use it often but it has come in handy and family and friends borrow it from time to time. It can move a gun safe. Anyway, have a great flight and speedy recovery.
Michael
Posted 6/30/2023 1:18 AM (GMT 0)
nels - I think the feedback loop gets damaged and needs to be retrained. The catheter keeps everything working 24/7 now it is your turn again. Not sure exactly how you do that though other than keep working the muscles and it comes back to most men.

The coffee and alcohol re-introduction can be done as fast as you are willing try but they don’t help much with the continence restoration process. I drank tea with honey for a short while then to one cup of milder coffee and was back to drinking a few mugs of tasty coffee every morning with the first month. I sipped on 2-3 oz of red wine in the evenings for a while then to a lighter beer, sometimes both. I could drink an IPA after a while but no Russian Imperial Stouts for a couple of months. The big test was the first brewery visit with friends where my usual two pints was a bit of a challenge but survived. Slow and steady wins the race.

Of course, get an aisle seat…..
Posted 6/30/2023 7:53 PM (GMT 0)
Michael - yep I have a "convertible" hand-truck which will be handy for moving the safe across the garage, but I may just opt to tip it over & slide it on a clean furniture blanket inside. Our house has hardwood floors which might suffer from the dolly wheels -- when we moved in a wood-stove got rolled across the living room on a dolly, and even though we put cardboard down you can still slightly see the tracks. For the safe it's the tipping over & standing back upright that takes it well over my limit...

Mumbo - agree, been thinking of it as a pissy feedback loop. I think the deliberate pre-emptive peeing is a good way to reconnect the brain with the valves. And I figured the beer & coffee are not exactly illegal, but are detrimental to the re-continental agenda. But sometimes on a sunny afternoon you just need to spend a moment on the deck with one's wife & a nice pint.

The advisory on Imperial Stouts is noted. We'll graduate to a sturdier ale when I'm down to maybe 1 pad a day...

cheers,

nels
Posted 6/30/2023 8:04 PM (GMT 0)
Got my pathology report and a voicemail from Dr. Frank, indicating he thought it "looks fantastic."

Only part that is a bit worrisome for my knowledge-level is the "Extraprostatic Extension" but I hope that concern is canceled by the negative margins.

I may not get to speak with him before the weekend, so if anyone has any translation / explication I'd appreciate it!

(pasted text below)

FINAL DIAGNOSIS

A. Prostate, radical prostatectomy: Adenocarcinoma
(Gleason pattern 3+4, grade group 2) is identified forming
a dominant mass 1.2 x 1.1 x 0.7 cm located in the left
superior to mid posterior regions of the prostate. The
tumor is not confined to the prostate with extraprostatic
extension into soft tissues in the region of the left
posterior prostate. The seminal vesicles are negative for
tumor. The surgical margins are negative for tumor.

SYNOPTIC REPORT: Prostate
Procedure: Radical prostatectomy
Prostate Size:
Weight: 45 g
Size: 2.8 x 3 x 4.5 cm
Histologic Type: Acinar adenocarcinoma
Histologic Grade
Grade Group and Gleason Score
Grade Group
Grade Group 2 (Gleason Score 3+4=7)
Minor Tertiary Pattern 5 (less than 5%):
Not applicable
Percentage of Pattern 4 in Gleason score 7: 30%
Intraductal Carcinoma (IDC): Not identified
Cribriform Glands: Present
Treatment Effect: No known presurgical therapy
Tumor Quantitation
Estimated Percentage of Prostate Involved by Tumor: 10%
Greatest Dimension of Dominant Nodule: 12 mm
location of Dominant Nodule: Left superior to mid
posterior prostate
Extraprostatic Extension: Present, focal
Urinary Bladder Neck Invasion: Not identified
Seminal Vesicle Invasion: Not identified
Lymphovascular Invasion: Not identified
Margins: All margins are negative for invasive carcinoma

Regional Lymph Nodes Status
Not applicable (no regional lymph nodes submitted or found)

Distant Metastasis. Distant Site(s) Involved: Not
applicable
Pathologic Staging (AJCC, 8th edition)
TNM Descriptors: Not applicable
pT Category: pT3
pN Category: pN not assigned
pM Category: Not applicable
Additional Pathologic Findings: None identified

Best Tumor Block for Ancillary Testing: A14

The synoptic report incorporates information from all
relevant surgical material and includes all required data
elements of the current CAP Cancer Protocol.
Posted 6/30/2023 9:31 PM (GMT 0)
I have a tendency to look at the glass half empty so bear with me here. If you are looking for questions to ask Dr Frank about regarding his “looks fantastic” assessment, I can suggest a few in addition to EPE which yields the pT3 classification.

“Minor Tertiary Pattern 5 (less than 5%)” means what to him?
“Cribriform Glands: Present” means what to him?

It is always better to have nothing extra mentioned in the pathology report so I picked these out for you. The only thing that really matters now is your recovery and your 3 month PSA so don’t worry about the fine print too much. Sounds like you are your way to good recovery and yes, sometimes a pint on the deck is exactly what you need.
Posted 7/1/2023 5:35 PM (GMT 0)
Nels, you’ve probably heard this from others, but be careful about straining your innards while you heal. I was frustrated that they wouldn’t allow me to start PT until three weeks after my (DaVinci 7 port, I think) surgery, then the PT explained that it was to allow for internal healing. He said the body heals from the outside-in, so it is important not to strain you interior too soon (doing sit-ups, etc). I had a lot of leakage after my catheter was removed which surprised me since I had been doing lots of kegels prior to surgery. It turned out that I was firing the wrong muscles and doing kegels while the PT used an ultrasound machine allowed me to find the right layer of muscles to fire. I, too, had an EPE, but the surgeon said that the negative margins and clean lymph nodes gave him confidence. 2.5 years later, so far, so good. Best wishes.
Posted 7/1/2023 6:36 PM (GMT 0)
nels - my tertiary grade 5 comment does not apply as it says “not applicable” on the next line, the templates they use are not always clear or filled out properly. Sorry, just the cribriform comment applies.
Posted 7/1/2023 7:03 PM (GMT 0)
Mumbo - thanks for the input. (edit -- we cross-posted: I hadn't refreshed the page & seen your last comment when I wrote this!)

The "Minor Tertiary Pattern 5 (less than 5%):
Not applicable"
might have a text formatting issue & should all be on one line, which would make it = N/A. The "Cribiform" morphology is a concern, as is the EPE, so I'll be sure to interrogate Dr Frank about these factors.

patrickm - thanks for the note on core strain, this has been on my mind. I have pretty good core strength, which ironically probably elevates my risk of doing something counterproductive out of spunky absent-minded habit. Trying to be vigilant & relax my abs as I do stuff as simple as getting into / out of bed, or opening our slider windows.

And of course it is nice to let my wife open doors for me, but I won't get used to it 🙃.

I'm also wondering about that correct-Kegels issue. I feel like I have a good connection to start-squirt part of the squinch, but am trying to find the valves-locked muscles to forestall the dribbles. I'll be curious to find if my PT has any ultrasound to assist with that connection.

I hope everyone's having a lovely long weekend. Here on the Redwood Coast of northern CA we've got glorious sunny breezy cool weather & I can't wait to get out for a nice long wander around the marsh / wildlife refuge!

nels

Post Edited (nels) : 7/1/2023 11:08:15 AM (GMT-8)

Posted 7/2/2023 4:56 PM (GMT 0)
One other thing that I forgot to mention, but your comment about wandering around the marsh reminded me: about a month and a half after my RALP, we went for a week vacation in Santa Cruz, and I’d go for daily walks. I noticed that I’d start to leak after about walking 2.5 miles, as (apparently) my newly developing muscle would fatigue. I slowly was able to ramp up the distance, but made the mistake of walking about 6 miles around Elkhorn Slough with no exit plan. By the time I got back to the car, my jeans were soaked and I had my jacket wrapped around my waste in an attempt to hide it. I also noticed that I’d leak more if I “stood tall” while walking. Talking about this with the PT afterwards, he said that the bladder will drop a bit, lessening the tension on the inner tube (which is now shorter), which is why standing tall initially caused leak problems. He also said that my 6 mile walk was way further than his other patients at the same point of their recovery. I decided to back off a bit, and “trust the process” that my body would heal itself. He also had me doing kegles in all sorts of different positions (twisting, plank, bird dogs, reaching up high, lunges, etc), to train the muscles in may possible positions.

Post Edited (patrickm) : 7/2/2023 8:59:18 AM (GMT-8)

Posted 7/3/2023 4:39 PM (GMT 0)
patrickm -- thanks for the heads-up, don't think I'm gonna attempt any 6 miler walks for a while. Averaging about 2.5 mi / day this past week, generally with one longer excursion & one brisk & brief-- I'm only 11 days out from surgery so I curb my ambitions to match my limited capacity. I've been pleasantly surprised by how effective the Tena & CVS branded "guards" are for intercepting the leakage & not becoming evident or uncomfortable.

Interesting about the standing / posture issue & stretching the "tube"-- that makes sense. And I'm also going to check out various positional kegels -- I'll inquire about that when I start PT next week.

On another continent-related subject: I realized yesterday, to my dismay, that my current limit for IPA is one pint. After enjoying one on the deck, having a second with dinner was lovely but definitely counterproductive for my continental progress 🥴.
Posted 7/3/2023 4:53 PM (GMT 0)
I get the impression with regards to incontinence that if you do everything right, it takes 90 days to turn the corner, while if you coast along, it takes 3 months. 😉

There just seems to be a healing process that just takes time. Scar tissue forms, nerves learn new jobs, etc. This is my take following my HoLEP, where the 90 day point was when things really normalized. Prior to that, every day was an adventure in what my body was going to surprise me with, as healing chugged along.

It would probably be helpful leaving the hospital to fall on some concrete and get a big road rash on your hip. The outer healing of the visible wound would progress about the same rate of the inner, and help set expectations appropriately. 😜

Great attitude, Nels. It’s a tough fight.
Posted 7/4/2023 12:42 AM (GMT 0)
Yep centralPAdude I have been diligently trying to do everything right so I can bring my continental recovery down from 3 months to a mere 90 days. But if I slip & have a beer too many or fail to do all 3 sets of daily kegels, I'm okay with the 3 months!

Had my consult with Dr. Frank on the pathology report today. He said that the presence of focal EPE & Cribriform morphology are indications risky & aggressive cancer-- but the negative margins give him confidence that we've got a good cancer-control outcome with no further treatment at this point. Just a 90 day PSA & re-assess.

Whew. Deeply grateful.
Posted 7/4/2023 1:44 AM (GMT 0)
nels - it is really that simple, wait 90 days, get your PSA and go from there. You will be feeling much better then also. No one knows for sure what is going to happen so your 3 month then 6 month PSA’s will tell the tale until you get back to annual testing. Some people with great pathology have recurrences early on and some with poor pathology never have a problem. Cancer is screwy that way so sometimes you just have to sit back with an IPA and ponder. Two IPA’s are too much pondering in the first month.
Posted 7/4/2023 12:27 PM (GMT 0)
Mumbo,

IPA is not required--some us prefer other blends of malted barley and hops. When I can get it, I like Ommegang Three Philosophers for pondering.
Posted 7/4/2023 6:44 PM (GMT 0)
Ha, halbert -- that Three Philosophers has enough kick to tilt my idle pondering into a flamboyant faceplant.

I'm sure the subject of which ale is most salubrious for post-PCa-treatment recovery could become a whole new thread.

The west coast craft IPAs have gone so massive with their huge dry-hopped flavors that one of my faves is aptly named "Palate Wrecker." But this amplitude can get wearying.

Here in Northern California's "Emerald Triangle" there's been a folk-history of black market bud-cash finding its way into capital for brewing ventures. And the flavor profiles tend to respect the constituency: IPAs go towards dank, piney, and even "skunky".

In semi-jest I once asked the head brewer of a new brewery about this -- if he was designing his flavor-profiles to court the patrons of all the new "dispensaries" that were popping up around our town.

He threw up his hands and laughed and protested: "Hey, they're related plants!!"

But I agree, there are many fine fermented beverages outside the over-hoppy IPA zone. I've been discovering some great varietions for summer deck-sipping, with lower ABV & crisp bold flavors-- most recently: Chiapponne Italian Pilsner, from Redwood Curtain.

https://www.redwoodcurtainbrewing.com/our-beers

You can get well-quenched just by reading their descriptions:

"Thick, rich head. Golden Tuscan sunrise over fields of malt in color. Clean, fresh rising pizza dough, mild herbal and light dash of lemon citrus aromatics. A pleasantly soft, spice hop mouthfeel with a quenching and refreshing finish. Brewed with Weyermann Pils, Crisp Euro Pils, Weyermann Carafe Special III malts, German Northern Brewer, Mandarina Bavaria, Sazz, Tettenger hops and our proprietary Bohemian Lager yeast strain."
4.8% ABV 25 IBU 11.6 OG

🍻 cheers for the 4th,

nels
Posted 7/5/2023 10:54 AM (GMT 0)
Nels, out here on the East coast, super-hopped IPA's are a thing as well. However, I simply don't care for them.

You must be feeling better, to be able to discuss, with some detail, the tastes and descriptions of some craft brewery output. I like mine less hoppy and more malty, particularly with lots of caramel and toasty flavors. English style brown ales (Smith's Nut Brown is a great one) and Barley wine (Weyerbacher Blithering Idiot), are two I keep in my spare fridge at all times.

Keep us posted on your recuperation. How's the continence going?
Posted 7/6/2023 6:18 PM (GMT 0)
halbert I only hope there never comes a day where I'm not able to have a detailed discussion of craft brew tastes!

On the continence front I'd say I'm making headway but it's spotty.

In a nutshell, progress ebbs & flows.

Some days I feel pretty much in control but then turns out I'm getting overly cocky. But I don't get too upset; it's just water under the bridge.

I remind myself I need to be patient and that I can't hurry the process. I just have to do my daily sets of kegels & go with the flow, as any setback is merely a drop in the bucket.

I may try to migrate to lighter pads this week, just to get my feet wet.

nels
Posted 7/6/2023 11:43 PM (GMT 0)
But seriously. Today I'm 2 weeks out from surgery & 9 days from catheter-out, and am having some good days / nights with just minor leakage. Other days with 2-3 "maximum absorbancy" pads per day, & find correlation with low-sleep nights & more than one beer in the evening. Continuing to slowly improve, and am periodically visited by the nocturnal spontaneous stiffy. Still haven't deployed into sexual activity yet, but soon we'll see how we go in that dept...
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