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

@charlesprestridge Charles-best wishes to you as well.

I'm not normally a person who experiences high emotional drama....but, you know, challenging times with less than simple answers.

Thankful to everyone for their help!

There is no perfect solution for PCa. Choosing from the treatment options is difficult. Choosing treatment vs active surveillance is difficult.

Everyone should know the risk & side effects of the treatment they have chosen and be willing to live with it. In my journey, I made the decision to have surgery and then I made peace with it. Being burdened with doubts is useless, the burden of having PCa is great enough.

Not at all telling you what decision to make, but once I made my decision I then tuned out of most topics on this discussion board and elsewhere. I needed to keep myself unburdened and at peace. This is just my way, knowing how my mind and emotions work. Wishing you well!

@jeff1963 Well stated sir! Thanks for the well wishes.
I guess in a sense, being challenged on my decision may be a good thing, but I sure didn't ask to be challenged. I could've lived without just fine and being unburdened would have been so much better. Oh well.

The good part? It firmed my resolve in my decision. The bad part? The full realization that there will likely be better treatment choices with proven results in the near future. Focal might be that...but not enough data right now. We have to make a decision based on where medical science is right now.

Just spoke with a really good fellow who should'a been on active surveillance. But, 16 years ago, everyone got surgery. That was the standard of care then. I'm stuck in the now.

@turtbean Wow-sharing all that info in such detail-super helpful in a big way.

Do you do anything for the itchy-burny-sticky situation or just cope?
The pelvic floor work is interesting. Pre-surgery, I've been trying to do kegels in different positions. It's super easy to do sitting down. Standing up has gotten easier. But, I've tried doing them while walking and going up stairs. That's a whole lot trickier-but getting there.

Question: On the core work, does that affect your incisions, pain or increase hernia risk. I do a brief morning high-intenisty workout that has tons of core work. But, I'm not sure I will be able do any of that for a long time after surgery.

Owning your decision-that seems to be key.

@colleenyoung
Thanks for the support Colleen. You are so right about the moderator. I know that he realized that what happened was completely the opposite of the purpose of a support group. I so appreciate that he reached out. But, I also know everyone in the medical system has their own bias. They are human. In his case, I know that he is opposed to RP in general because he treats sexual function. So, his view that avoiding RP is the goal came through clearly to me, even at the last meeting where he initially reccomended active surveillance even though I've had two surgeons and a radiation oncologist tell me I am not a candidate for AS.

I have not reached out to the surgeon because I think the question is really, do I move forward with my decision...or do I put on the brakes completely and cancel until I can be evaluated for Focal. I don't think he could answer whether Focal is right for me without re-evaluating my case.

I've been so fortunate. I'm super thankful for this community. I've chatted directly with three PC patients today. One is 100 percent unhappy with his surgery decision 16 years later. He is still angry that the doctors didn't fully inform him of all of the side effects. It's been tough. Another patient friend talked with me and he is 100 percent satisfied that his surgery was his best choice eight years later. They both suffer complete ED. The third person started with Focal, then had to have salvage RP, hormone therapy and radiation. He feels he should have started with RP, but made his decision to do Focal based his life situation at the time. He's in a great place and enthusiastic about his life.

Take-aways; everyone has a different story. We're gonna have what-ifs. My decision was confronted and I guess it has strengthened my resolve. My insurance likely won't cover it, it may not be right for my diagnosis and there isn't enough data yet to convince me that it isn't just kicking the can down the road.

Is it the right choice? It's going to have to be for me.

@fritzo

For the “itchy-burny,” I found that barrier cream works…sometimes. What seems to cause it is that with Depends fitted with a guard, it’s easy for the head of my penis to get pushed up against the guard, especially when sitting or lying down.

As urine drips out, it gets the guard wet, and my tip is sort of trapped up against in a perpetually damp spot, causing the discomfort, which causes constant adjusting and readjusting, trying to find a comfortable position for it. Sometimes the cream helps, sometimes moving around and adjusting helps, and sometimes, it’s just a matter of enduring it.

Pelvic floor & core - I didn’t start that until two months after my catheter came out, and my incisions were well on their way by then.

I’m not the least bit active beyond having a quick disposition, I suppose you could say. I’ve always walked a lot, that’s about it, no gym work or anything like that. I’m guessing you’d find my core work pretty light, compared to what you do - I’m doing things like pelvic tilts, leg exercises with resistance bands, things like that, nothing very taxing, but they help.

Sitting down and lying down seem to be the easiest position from which to do a kegel. Standing…a bit more difficult, and holding one while walking or mounting a step is very difficult for me. I can engage it, but lose it at the first bit of exertion, but I’m getting better. We managed to go out to dinner tonight, and nothing more than a few dribbles - as recently as a week ago, I would have emptied my bladder as soon as I exited the car, would have needed to change guards in the restaurant, and would have done the same upon returning home. Tonight, one Depends pull-up, no guard, and it’s not even damp, and I’ve had it on for three hours. That’s pretty good.

Take care. Feel free to ask me anything at all about my surgery, recovery, side effects, etc. I have no shame and don’t know when to shut up! 😉

Is it not true that 50% of men who have RP end up needing radiation anyway? Perhaps I read those stats wrong? I know of at least one top prostate doc who is against RP, Dr Scholz who has many videos on youtube. He is an MO so isn't pushing any specific treatments. But from all of his videos I've seen he shy's away from surgery. It seems if your doctor is a surgeon he pushes for RP, if RO radiation, others that do HIFU, etc etc will push you toward their specialty. I think there may be a place for all these options depending on the patient & their stats. It can be very confusing and you always wonder are you or did you make the right choice.

@copyman - I think it’s really difficult to pin a number on recurrence. Each case is different (is the tumor pT3b…pT2a…did it get into the lymph nodes…) - that said, the numbers my oncologist gave me for my two treatment options (surgery or hormone shots & radiation) showed pretty similar outcome paths, around 33% experience recurrence.

In my case, my oncologist was the surgeon who did my RP, and he didn’t steer me toward surgery at all. He laid out both treatment plans, the pros and cons, told me to think it over, then to let his staff know, and they’d handle the scheduling either way. He was very helpful in covering both paths.

Maybe it was because I had my treatment done at a large cancer center, so sending me to the RO simply meant trotting me across the hall, not to another practice, so it wasn’t like he lost any money over it. I really couldn’t say.

@fritzo
I was at the UCSF conference today and Dr. Cooperberg gave a talk about focal therapy

He said this in November

At the 11/1/2025 PCRI conference the following was said by Matthew R. Cooperberg, MD, MPH Urologic Oncologist UCSF

What about focal therapy?
* The energy modality matters much less than the accuracy of the imaging - which is not there yet.
* Overall focal therapy is associated with minor side effects, but high rates of recurrence both in- and out-of-field.
* Focal therapy is not really a replacement for surgery or radiation; it is better considered an adjunct to active surveillance

He reinforced it today. He felt that people who had more than a 4+3 or had lesions in both sides of their prostate should not even consider it. Here’s a bunch of information from his today’s presentation.

Some information from today’s slides

UCSF Results: first 135 HIFU patients
• 54% recurrence (41% in-field)
• 4% progression by 1 year, 16% overall
• IPSS (urinary obstruction) 6 before, 6 after
• SHIM (erection function) 16 before, 13 after (p=0.11)
• Major drivers of recurrence: GG3, high Decipher

Trade-offs
• Overall focal therapy is associated with minor side effects, but high rates of recurrence
• Inadequate energy delivery?
• Inadequate field of treatment?
• New cancer development?
• Others?
• Understanding the high recurrence rates and trying to improve them is a major area of research focus.
• Focal therapy does not burn bridges: RP, RT, even additional focal therapy are possible if necessary

Summary thoughts
•Focal ablation has a growing role for very carefully selected cases.
• Side effects rates are low but recurrence rates are high. GG3 and high Decipher are warning signs, as are high PSAD and bilateral disease.
• Focal therapy is an adjunct to active surveillance; additional treatment may well be needed down the road, but these treatments are still possible after focal.

University of California Consensus
1. Focal therapy must be acknowledged to be investigational
2. Focal therapy should be done under trial or research protocols as much as possible
3. Candidates should have at least 10 year life expectancy, GG2 or low-volume GG3, stage T1 or 2, and PSA < 10 or PSA < 20 and PSAD
< 0.15
4. Candidates need an MRI-guided confirmatory biopsy before treatment
5. Follow-up biopsy at 12 months is essential

@copyman

There is about the same rate of BCR for RP and RT but after RP one can have salvage RT as a second chance for cure. (Yes, they call it "salvage with curative intent").

Radiologist like to say that there are additional radiation techniques that can be implemented post RT - yes there are, but with less success and much bigger post radiation toxicity. Not to mention that salvage RP is with much higher incidence of incontinence and ED is almost warrantied and it is very, very rarely done.

There is even a new line of thought that with immunotherapy RP will become even more implemented as a "tumor de-bulking" first step, but that is another story ...

Bottom line - BOTH therapies have their pros and cons, BOTH give about the same result, BOTH can cause ED and incontinence but in reverse time span, BOTH groups of patients will have almost identical OS rate.

It really comes to one's personal preference - what looks less off-putting to you ? For my husband being on ADT that can cause numerous side effects and having RT for two months with possibility of secondary cancers was more scary than having surgery. Now that he will probably need salvage he is happy that he had RP and now has a second chance for "cure". He has zero "buyer's remorse" - ZILCH.