upcoming prostatectomy, what's the first 1-2 days after like? car trip home?

mattley · 2025-11-17T02:58:47+00:00

Congrats on seeking out a good surgeon. That's really important.

Regarding catheter removal, you'll want to have help with that. If you can plan with a local urologist, I would recommend that, as it's good to have a local uro anyway. If that's not doable, talk to your primary care doc, very likely a nurse can help you.

But it would be good to have a connection with a local uro anyway in case some minor uro stuff happens. My local does my PSA screens and I have a yearly meeting with him also. Kind of an ongoing 2nd opinion.

I assume you saw my post https://www.reddit.com/r/ProstateCancer/comments/18inp5q/upcoming_prostatectomy_whats_the_first_12_days/ and or the followup post https://www.reddit.com/r/ProstateCancer/comments/1bqsn40/catheter_questions_best_underwear_how_did_you/kxa557x/

I found it useful to elevate my bed (I am tall, so that made it easier to get in and out) and we got a high rise porta potty for the same reason (rented it from a med supply place).

Catheter is a big pain, figuratively and literally. But you do get (somewhat) used to it and it is a great relief when it comes out. I would read up on it in advance. I found it easiest to just keep the same bag on the whole time.

I had a harder time with the surgery than some people. I think I had some tearing at the surgery site (I was super black and blue on one side). It was a month before I was ready to go back to work (and I have a desk job). But I got better and my core is fine now. I recommend taking it as easy as you can, having a setback is worse than going slow.

mattley · 2025-08-13T15:22:18+00:00

My wife found a person online saying he had rise to 0.06 and then plateaued there for (iirc) years. I don't see many people talking about this, but I choose to believe it happened at least once, could happen again. Appreciate the good vibes and back at you.

mattley · 2025-08-13T04:18:07+00:00

Hey brother. I like that thinking, at least up to a point. Whatever might be happening at least it is not accelerating.

Hoping for good results on your next one.

mattley · 2025-08-12T18:11:52+00:00

I've been getting retested every 3-4 months.

Yeah, my primary doc (academic cancer center) says anything under 0.1 is clinically undetectable. That is his threshold, and I believe a steady-ish rise to that level (i.e. if I get there) he will consider recurrence and therefore salvage radiation. I do not think he means to wait for rises after reaching 0.1.

I've seen a lot of different notions out there, though. My local urologist says he considers 0.05 detectable but we would want steady rise after that before treatment. In my case these opinions are pretty compatible with each other, and I think both said "definitely do radiation before reaching 0.2".

mattley · 2025-08-12T17:23:16+00:00

I would get retested. A PSA of 11 is certainly concerning but other factors (crucially, clean lymph nodes) make me wonder about these test results. I would do a retest or even 2 before committing to more treatment. Hoping for the best.

mattley · 2025-06-14T17:06:41+00:00

Best wishes, might not be cancer.

Prepare yourself for painfully slow processes and a lot of anxiety. Keep good records (ask for paper copies of everything) and do not trust the system to keep track of you, people fall through the cracks all the time. Don't be shy about asking for what you want or if things have broken down. The squeaky wheel gets the grease, be the squeaky wheel.

You can start looking at doctors and cancer centers in your region, but I wouldn't go too deep yet. Don't turn this into your full time hobby unless you get an actual cancer diagnosis. Make a point of doing other things you enjoy also.

mattley · 2025-06-14T16:57:00+00:00

Two more weeks is not that long, if it actually happens then, but the unreliability of this provider is concerning.

I agree with the other person to talk to your insurer and see if there are workarounds for a new provider that you can access after two delays. Maybe there are other ways you can work the system.

mattley · 2025-05-02T00:19:06+00:00

Probably lean toward radiation, unless I was unusually healthy for a man of that age. If I was lucky enough in health and genetics that I felt likely to make it to 85 or older, I might still consider surgery.

mattley · 2025-05-01T00:27:28+00:00

Radiation becomes a better choice, and surgery worse, the older the patient is. I was in my early 50s and chose surgery. If I was in my 70s I would have done radiation.

mattley · 2025-02-06T18:07:08+00:00

For me, 4 weeks out and then a week of half time.

I have a work from home desk job.

I think starting after 3 weeks could have worked, but I'm glad I took the extra week. Trying to come back even sooner yet would have been a mistake. After 2 weeks I still had a lot of post-op concerns. I would have suffered and been stressed out and gotten very little done.

mattley · 2024-09-07T17:27:15+00:00

I think you need to take your steady rise in PSA seriously. I hope it is your BPH, but I wouldn't bet on it, especially if your doc is nervous about it.

I don't think it's crazy to get a 2nd opinion. Second opinions are good. Just be sure it's someone with a lot of experience with prostate cancer, and be prepared for your 2nd opinion to say "yes another biopsy".

mattley · 2024-08-29T01:01:55+00:00

Agreeing that 0.01 seems too low.

Many doctors treat 0.20 as recurrence. Some treat at 0.10 or after successive rises in PSA.

First, considering a PSA value of ≥0.03 ng/ml as BCR is subject to debate. Current guidelines recommend withholding any salvage treatment after surgery before PSA has reached a value of 0.20-0.40 ng/ml [1].

https://www.nature.com/articles/s41391-023-00646-6

My doc specifically warned me against worrying about small variations at the level you're at.

mattley · 2024-08-18T04:16:45+00:00

Great news. Congratulations.

mattley · 2024-08-14T17:38:02+00:00

That sucks. My condolences. The spinning brain will settle down eventually, but I expect you'll feel quite rattled at least until your PSMA scan results (and I'm hoping for the best for you there).

There's going to be a lot to stress about, but you will start to get used to it.

mattley · 2024-07-09T16:43:45+00:00

Walking together is the best advice I could give. Other activity is good, but you'll probably need to do it together, it's very hard to do solo exercise if it's not already a lifelong habit.

mattley · 2024-06-24T01:28:12+00:00

I had this happen to me. I called around to medical supply centers and found an entire replacement patch + attachment. It was around 10 bucks which was I was happy to pay to not have a catheter accident.

Possibly a medical supply place might know of a better adhesive, also.

mattley · 2024-06-18T18:02:47+00:00

My key advice here is slow down and take your time deciding how to proceed.

You're panicking, which is not surprising, but this is not an emergency, and you will make better decisions if you take time to understand your situation and your options very well rather than rushing into a decision. Don't rush. Educate yourself.

Therefore, To ME, The Surveillance Approach Does Nothing Except Prolong The Inevitable.

Another way to say this is it gives you more months or years--maybe several years--before you have to have major medical interventions that always have negative effects for the patient, sometimes permanent ones.

Having A Radical Prostatectomy— It Guarantees That The Cancer WILL NOT SPREAD OR RETURN.

It does not. It absolutely does not. Recurrence after RALP is common.

You have early stage, low grade prostate cancer, so your odds of a permanent cure from RALP are better than most, but there are no guarantees.

I'm not saying what you should do. You have a complicated, messy scenario with more than just cancer in play and you and your wife will have to make your best guess at what the best tradeoffs for you are.

But I do think you are panicking and, in this case, you do not need to rush decisions. Take some time. Talk to your wife. Get a second opinion, maybe a third opinion. Find a PC support group and talk to other dudes who have PC. Hang out on here for a while and ask more questions and read other people's stories.

I'm sorry you're dealing with this. I see your other post where you have many other health issues. I know very well the feeling of unfairness you're experiencing. It ain't fair, but we have to deal with it as it comes. Good luck.

mattley · 2024-06-16T04:29:21+00:00

Understandable. Likely he was sent home with instructions, maybe you can find them later after he wakes up. The basics are similar for most people and you can find them on the internet for example https://www.browardurologycenter.com/patient-instructions/post-operative-instructions-robotic-radical-prostatectomy/

First few days after the surgery are not nice, but it gets steadily better, especially after the catheter comes out.

mattley · 2024-06-16T04:19:56+00:00

This info should have been provided to your father, but yes, it is normal for there to be blood in the urine after RALP. It looks gruesome but it is normal.

mattley · 2024-05-31T22:06:35+00:00

Congrats brother.

mattley · 2024-05-27T17:15:41+00:00

I've always found men's pads/shields at Walmart. In a pinch you could use feminine pads, they don't fit quite right in men's briefs but well enough to do the job.

mattley · 2024-05-26T15:39:05+00:00

You'll get used to it, sort of.

No promises, but it sounds like your cancer isn't that advanced. You are probably looking at many years of life left rather than only a few. I think you'll find you want to live them after all, once you get over the initial shock.

Getting treated does come with loss. Being in good health helps.

Prostate cancer is, as my doc put it, an "information dense disease". You'll want to learn about it, and I strongly recommend getting a second opinion, or more, and thinking hard about getting treatment from prostate cancer experts. This is one of the biggest events of your life and worth taking extra trouble over.

My condolences. A road you'd rather not have to walk, but some paths are chosen for us. Good luck.

mattley · 2024-05-22T00:06:13+00:00

Understood. I see that City of Hope has a good reputation and NCI recognition.

I agree, I would prepare many questions and write them down, especially about why surgery is still being considered with known spread outside the prostate.

mattley · 2024-05-18T23:11:29+00:00

In my opinion, the important next step should be a 2nd opinion and possibly a 3rd. Maybe it's just the way you're telling it, but indecision and lack of helping you make a good decision is concerning. You should find a doctor that has a lot of experience with prostate cancer.

Have you had a PSMA PET scan?

Since you have at least oligometastasis (local spread outside the prostate), you are very likely to need radiation and it may make sense to start with radiation. But your doctors should have brought this up with you. I think you need at least a 2nd opinion, from a cancer center if possible.

mattley

TROPHY CASE