Weighing my surgery options (aka lost in the weeds)

Ugh, don’t like the catheter self-removal. You’ve obviously researched much more deeply than i have so far. But if it hasn’t metastasized, why aren’t you doing something with local therapy? Proton therapy, e.g. According to data I saw, it seems less likely to add to your urinary issues.

The team I saw at MD Anderson included an expert in focal therapies and they all recommended surgery for my particular case.

"Thoughts/experience on flying with catheter, self-removal, and necessity of PLND?"

A) Flying with catheter - I'd probably give myself a day or so to get used to it before doing this, but, I don't see much of an issue with it. I was up an around one day after getting home with mine.

I found this guidance...

Drainage Bag Management: Ensure the catheter bag is securely positioned below the bladder (e.g., strapped to your leg) to maintain proper drainage during the flight. Empty the bag before boarding to avoid overfilling, and carry supplies for changing or emptying it discreetly.

Cabin Pressure: Changes in cabin pressure during takeoff and landing typically don’t affect catheters, but trapped air in the bladder or tubing could cause discomfort. Ensure the system is free of air bubbles and properly secured.

Medical Clearance: If you’ve recently had prostate cancer surgery (e.g., radical prostatectomy or PLND), consult your urologist. Flying too soon after surgery could increase risks like blood clots or complications, especially if the catheter was recently placed.
back to me...I used the smaller leg bag whenever out in public, you do have to be a little careful with those as they don't hold a lot of volume, I've had to go into mens rooms to dump it.

Self removal - umm, not for me thanks. I've only had the one from surgery in my life and the way the nurse removed it was not pleasant (not horrible either) but it was like ripping of the proverbial band aid. IMHO better for someone else to do.

necessity of PLND? - My surgeon took the right pelvic with no indications of an issue. Just to be thorough as most of my tumors were on the right side. It was negative and that was nice to know! How necessary is it? We didn't really discuss it in those terms.

Best of luck to you!

I'm not second guessing your team at MD Anderson, but did you speak to anyone there who does radiation therapy? MD Anderson offers proton beam therapy, so I am curious to know if their proton beam and photon treatment oncologist(s) reviewed your case too. When I went to Moffitt Cancer Center in Tampa, the oncologist surgeon had me meet with their brachytherapy specialist and their radiation specialist to discuss these treatments too. I eventually sent for UFHPTI's free packet to research proton beam therapy and ended up going with that. Moffitt won't offer proton beam until 2026. So I understand clearly, did your MD Anderson team include radiation specialists who also recommended surgery instead of their particular treatments (photon or proton)? Being over 65 years old, I have traditional Medicare, and was able to obtain many other opinions and recommendations. Best of luck here. Thank you.

From my own experience, I favor Option B with lymph node dissection. PSMA PET is not reliable IMO, nor is a biopsy result. No one really knows the full extent/Gleason until surgical path is done and you may have some aggressive nests unseen on biopsy.
Also, my surgeon only removed ONE lymph node on each side - you should do about six. I had recurrence 5 yrs later and I still think THAT was the reason.
One last thing…although no fan of catheters I would recommend 10 day minimum (mine was 14 days). Why rush the healing of the urethra when more complications could ensue? Just my 2 cents. Best,
Phil

Yes, the multi-care team at MD Anderson included ROs - they all recommended surgery. In fact, the ROs said they would not even perform RT on me, although local ROs recommended 25 or 39 treatments (but not CyberKnife/SBRT). The surgeon I met with, Dr. John Ward is possibly more of an expert on focal treatment but also a renowned surgeon. I asked them all about brachytherapy, including an RO at another center locally, and nobody recommended that.

Surgeon A has the same view as you regarding 10-day catheterization. He said they've found it works better with the Retzius-sparing technique in terms of healing and continence.

I'm sure I can request 10 (or 14) days with Surgeon B, he just said they typically do seven days.

You might consider looking at options for catheter removal and going to the surgeon you prefer. Catheter removal is much more common than the surgery itself and in my case did not involve followup on the surgery. Also, the highly experienced recovery nurse (previously worked with John Walsh, of all things) suggested I keep the large bag on, which I carried around in a backpack hanging along my legs when I walked, and thus avoid any issues of bag contamination. This worked fine for the seven days I had the catheter and I was glad to avoid complications of catheter care with so much else going on.
As far as surgeons, it seems like you've found two good ones and you can just go with the one you feel most comfortable with. Reading between the lines, I'm guessing that might be option B? Bottom line, if there's no obvious differentiation, why not go with your inclination, for whatever reason or no reason.

@psychometric
I had not read or heard of the reasons that a radiation oncologist would turn down using more accurate mri based sbrt or Proton radiation, and MD Anderson has the Elekta Unity MR-Linac but in case anybody is curious, AI gave me this answer to: what urinary issues would a radiation oncologist not recommend radiation therapy to treat prostate cancer :

Severe urinary retention: If a patient has difficulty emptying their bladder, radiation can worsen the condition by causing inflammation and swelling in the prostate and surrounding tissues.

Obstruction due to an enlarged prostate: If the prostate is already obstructing urine flow, radiation may exacerbate the blockage.

Pre-existing bladder dysfunction: Patients with weak bladder control or overactive bladder symptoms may experience worsened incontinence after radiation.

History of frequent urinary tract infections (UTIs): Radiation can irritate the urinary tract, increasing the risk of infections.

Previous prostate surgeries or treatments: If a patient has undergone procedures like TURP (transurethral resection of the prostate), radiation may not be advisable due to increased risk of complications