Devastated by support group meeting: I'm doing everything wrong

Yowser...I'd be conflicted too! Were you ever told by your care team that you are not a candidate for focal? Also, an interesting question...What percentage of those who receive focal therapy end up back on the table for RP?

you were at a focal therapy discussion. I would imagine that is their focus. I was similar to you and chose surgery. My surgeon was a huge fan of ultrasound. Not sure what that procedure is called . He kept trying to convince me to do US. But it wasn't covered under Medicare and was considered an unapproved surgery so I just went with NS removal.

"not suffer the barbaric side effects of surgery"

This kind of alarmist nonsense is really a disservice to reality in general & medicine in particular, but it sells because of the general (& unjustified) fear of surgery in much of the population.

I had robotic-assisted laparoscopic radical prostatectomy five years ago, & it was a "nothing burger". I've had routine dentist cleaning visits that were worse. I woke up with five tiny (about the size of a dime) bandages across my beltline, & NO PAIN. I walked that night in the hospital. In the morning they removed a couple tubes and told me to get dressed & go home.

I did my usual 1.5 mile walk the next day & drove the day after that. Never a hint of any pain.

Now, here's the real kicker: THERE ARE A LOT OF PEOPLE HERE WHO HAD THE SAME EXPERIENCE WITH SURGERY!

I did have carry (under my clothes) a catheter to a urine drain bag for week. That was a minor inconvenience, but it was removed in an office visit a week later (also no pain).

I was 75 at the time, so my surgeon suggested radiation. I preferred the precision of the knife & selected the surgery anyway.

I wasn't disappointed. No incontinence, then or now. I can always add radiation later (but didn't), but you can't do the reverse.

@tuckerp Yeah, the moderator called me again this morning to check in on me, which was super kind. He explained that the Focal therapy doc was incredibly enthusiastic and was "selling" his product because they do have a great program....but that by not allowing anyone to speak after, the timing could be challenging. Candidly, last night, he was initially telling me in so many words that I should cancel my surgery and re-evaluate everything.

Suspect your dotor was suggesting either High-Intensity Focused Ultrasound (HIFU) or TULSA Pro. I'm pretty sure my insurance wouldn't have covered it either.

@readandlearn

Thanks so much for that! That's what I was hoping to get out of that support group meeting 🙂

Super thrilled your experience was so smooth. I'm fully prepared to deal with a much higher level of suckitude post surgery because it sounds so variable...but can only hope it goes as well as yours.

They did not literally say "barbaric," but that was clearly the intent by leading with why people should not want RP because of the horrible side effects of longer-term incontinence and severe ED and how Focal is the new way and so much better (if you qualify for that treatment).

Each situation is different.

I have not had treatment yet.

I consulted with Doctor to see if I was a candidate for Tulsa Pro. I am not due to location and size of lesion. Dr indicated I could do HIFU. I have not seen information to convince me to try HIFU.

In the coming months I will need to choose between RP and radiation.

Best wishes on your surgery.

Literally hundreds of thousands patients around the world have had surgery. Initially many patients prior to their surgery or radiation come onto the support groups to educate themselves about their upcoming decision and learn about the immediate aftermaths in terms of recuperation and how best to prepare and what to expect. By the sheer numbers you can tell most undoubtedly are happy with their decisions because they disappear into the background or drop off the support sites. You usually don’t hear from them except for the ones that want to stay on and encourage the others in their decision it’s not bad. Most support groups skew toward many patients that are enduring some very uncomfortable and unfortunate side effects that still need support and encouragement. I wanted to post this for any patients that might get discouraged from reading any comments, there are far more happy with their decisions than are not.
Now on another note everyone has heard the old statements that you meet with a surgeon he says surgery is the way to go and the radiation oncologist will say radiation is the way to go. Now with the advent of HIFU and Tulsa-pro new procedures have come online and get promoted in the same way as the others. Here is where it gets tricky, as everyone has different variables as to whether their cancer is best treated with the new procedures and that is why it is even more important to be sure about those treatments and you are an excellent candidate. They fail also. So what is your next plan. It is important to consider. If you are a good candidate but not the best, surgery is still available later, although not as nearly as difficult as salvage surgery from radiation but more challenging especially after Tulsa pro. Now radiation therapy is more challenging after HIFU. Are you just trying to buy yourself more time from concerning side effects from other procedures. Nothing wrong with that, people are on active surveillance for that reason. Medicare began approval for Tulsa-pro last year in January so it is still relatively new in numbers performed but is likely growing more rapidly now and being pushed more, now that more people are eligible. HIFU around longer. Those procedures are a good middle ground as many patients are concerned with the possible ED and incontinence. These are great procedures for some but also has added more difficulty in coming to a decision on treatment. Even the new surgical technique’s can substantially eliminate incontinence and improve ED. Everyone’s variables are different and no one jacket fits all and no one procedure is bad and anyone that tries to disparage a certain procedure overall is wrong. These are difficult decisions.

@fritzo, wow. Thanks for taking the time to write your experience. I can't begin to imagine the distress that the presentation caused you. Thank goodness the moderator followed up privately immediately after the session and again this morning. That was the responsible thing to do. I sure am glad he noticed your distress.

I think there is a a good lesson for all the guys and their significant others to learn from this. We are all different. Prostate cancer unites the members here, but each person is different, each case is different and everybody makes the decision that is right for them with the best information they have and with the guidance of their doctor(s).

Each expert is going to be most informed (and passionate) about the treatment they offer. Similarly each man here has the most personal experience with the treatment path he chose, and is similarly passionate and supportive in that option.

For prostate cancer, there are oten several effective treatment options available. That's such a great thing. But it also puts a burden on the patient to make their choice AND to be comfortable with it. That's not easy.

@fritzo, have you reached out to your surgeon to share the experience you had and to ask questions to feel ready to proceed? How are you doing now?

Hi - adding that I’m another RP “satisfied customer,” so to speak.

I had surgery at the beginning of January 2026, after choosing that over hormone-radiation. Surgery itself was pretty easy to get over. I followed my care team’s instructions and had very little pain. Catheter (after an initial mishap in strapping) was a breeze - I got used to it very quickly and removal was simple. If I’d been napping, it wouldn’t even had woken me up.

Side effects…yes, I was 100% completely and thoroughly, well and truly incontinent for two months after my catheter came out. I didn’t really think about what “incontinent” meant at the time, beyond the basics, but for me, it wasn’t pleasant.

I’d assumed I’d get the urge to pee, and I’d go in my pants. Yes, but wait, there’s more.

What I discovered was…my penis never “shut off” - it was a constant 24/7 drip drip dribble squirt drip, interrupted by moments of completely emptying, usually when getting up from sitting or lying down for more than 10 minutes - and with the force of a waterfall or firehose.

Overnights…up like clockwork every two hours, bladder dump upon standing, change out my guard (worn inside a Depends for extra protection), and repeat 4-5 times a night.

Always damp. Always itchy-burny. Always sticky. Ick.

But…guess what? Completely manageable. I got through it. Didn’t even make me angry. As my mom used to say, “If that’s the worst thing that happens to you, count yourself lucky!” and as my dad used to say, “It’ll get better…it can’t get no worse!” - they were a couple of comedians, yeah? 😆

Anyway, three months out, incontinence is improved, but still not back where I’d like it. I still wear guards, wear Depends pull-ups only when I go out. I’m up twice a night now instead of 4-5 times, and I no longer gush upon standing (most of the time).

I’m getting there, and a big thanks to my pelvic floor PT person for helping me tremendously. I can’t recommend one highly enough. I’m sure if I’d simply stuck with the basic kegels my care team outlined, I wouldn’t be this far along. She has me doing kegels from a variety of positions, and strengthening my core, and she evaluates whether I’m doing the movements correctly or not. That’s important, as an incorrectly executed exercise is an ineffective one, IMO.

ED…yeah, I’ve got that as well, but that’s definitely lower priority until the bladder control is back. In the meantime, I’m on a nightly half-dose of Viagra and a vacuum erection pump, just to keep the blood flowing and the tissue healthy.

I’m very early into my post-surgery life, I’ve had just the one PSA (undetectable), and even with the side effects, I don’t regret having surgery one bit. Not at all. Matter of fact, now that I’m down to getting up to pee twice a night, I’m actually getting more quality sleep now than before I had surgery. That’s a good thing.

Different folks have different cancer characteristics, and what’s good for one isn’t an option for another. There’s a tendency, especially among the less-informed and cancerless folks, to try and be helpful by saying things like, “My brother-in-law’s dad’s best friend had prostate cancer, and he got the freeze thing done. You oughta do that, worked great for him.” - there are a dozen different treatments because of all the different situations we can find ourselves in.

Bottom line - surgery was my choice and I’d make the same decision again tomorrow if I had to. It’s what’s working for me.

Good luck!

@wheel1 So much collective knowledge here in concise form.

• Making a treatment decision for patients is really hard.
• Getting all of the specific information about what your specific treatment options is hard. (especially with all the options today)
• Every treatment can fail because cancer is so individual and different. Leaving options for recurrence treatment is huge.
• Medicine is a moving target. You have to decide based on the knowledge of today.
• What is an exciting and promising new treatment is most likely not yet proven.
• Patients that do well tend to move away from the forums because they don't need the support anymore. A few wonderful souls hang around to pass on their knowledge.
• Living with cancer is hard.
• Your fellow patients are a lifeline that get you through this hard time.

So, yes, I've learned first hand the adage that surgeons want to cut, radiologists want to radiate...and now, Focal docs want to focate...or perhpas its ablate. You can't blame them. They've dedicated their lives to a practice to making people better.

Seems like the big benefit of Focal therapy is that you can treat now and not suffer as serious side effects (mostly) than IMRT or radical prostatectomy. To me, Focal doesn't feel curative. It's a way to kick the can down the road. The benefit of Focal is that it keeps most of your follow-up treatments available.

I hoping for curative...or at least best odds. So, it looks like surgery for me. It leaves the option of radiation/hormone therapy as effective recurrence treatments should I need them later.

Like someone else said, you have to make a decision and then make the best of that decision.

Just wish that I hadn't been hit with full force by a strong advocate for Focal a few days before surgery.