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

@ctsenior
The new one incision hole surgery is suppose to dramatically lessen the amount of nerve damage. There are lots of men who have had surgery that have recovered and have a useable member. I would not take the risk on focal therapy because long term data does not support its use. “Need for Retreatment: About 20% of men may require additional treatments (either a repeat focal session or whole-gland treatment) within 5 years. “. (From the Cleveland clinic). Surgery cure is about the 91-95% range. Sad to say there are no guarantees, but more based on a case by case by competent surgeon and oncologists.

My view on this is a bit different.

First (as you have just found out), there are different types of “support” groups out there. Many do offer “encouragement,” and will nod “yes” and agree with everything I say. (I have not found those to be useful.)

Others provide “support” in providing the latest diagnostic and therapeutic information, for me to then digest and consider, and (perhaps) to discuss with my medical team to see if it would improve my treatment outcomes (I have found those to be very useful.)

And finally, other “support” groups have their own agenda, either to promote (or demote) a particular treatment or protocol, or simply to be critical of whatever path others have chosen. (I have not found those to be useful.)

(I regularly attend two in-person support groups, and irregularly attend five virtual suppirt groups.)

That said, if you’re already that close to getting a prostatectomy, there shouldn’t have been anything said at that Zoom meeting that you hadn’t already known about and already considered in making your treatment decision.

> you should already know all the facts about RP.

> you should already know all the facts about focal therapies.

> you should already know all the facts about (external and internal) radiation therapies.

At this point, this close to going under the knife, there should have been nothing that expert could have said that would make you conflicted or despondent because you thought you had your “…mind made up and now experts were saying that was not the right thing to do.” So, regardless of what that Focal Therapy expert said, you should have already looked into that option and known (at least most) of what he was saying.

I would simply ask you to consider whether you’re confident that the treatment choice you’ve made is the right one for you? If the answer is “yes,” then absolutely go for it. If the answer is anything other than “yes,” then you probably need to step back and think this through. (When I decided to have proton beam radiation therapy, I had spent at least a couple of years accumulating information and evaluating treatment options. When I finally made my decision, that was it. As much as anyone can be certain, I was confident that was the right choice for me,)

Even though I didn’t have focal therapy (because of the nature of my disease, I was not a candidate), I do sort of agree with his one point —> If you’re not confident with your decision, then contact your doctor and get more info…..

This is an important decision you’re making; possibly the most important decision you’ll ever make. And, you’ll have to live with this decision for the rest of your life. It’s not possible to be 100% certain, but you should be as certain on this decision as you have ever been on any decision you’ve ever made. Again, if you’re good with it, go for it.

Exactly 5 years ago today (April 19, 2021), I started my 28 sessions of proton beam radiation; I had already had my Eligard injection and the SpaceOAR Vue insertion. I was confident it was the right decision for me then; today (5 years later), I’m still convinced (and relieved?) that everything has gone as well as we had expected and planned.

Good luck as you proceed on your journey.

@fritzo
Hi, From the information I have read the success rates of both surgery and radiation are about the same. Both are in the mid 90% for localized process cancer. It’s more of a case by case depending on lots of factors. If you have cancer contained in the prostate and you have an experienced surgeon you should be fine. Sad to say there are no guarantees.

@fritzo ,

also after the surgery those groups are very helpful. Just cause you had surgery does not mean that the problem is gone. Depending on your surgery outcome you may end up with additional radiation or ADT treatment.
Just like me. I am waiting for the official pathology results from the surgery, hopefully this week I will get the results and then the plan moving forward can be defined. I am still continuing my ADT which i started before the surgery, but it will most likely be augmented with RT.

Looking forward to hear back from you once you get back from surgery.

Stay strong and be positive!
Dinu

@fritzo
I am so happy to hear of your wife. I am sure that you were quite frightened as I would be, way more for your spouse than you could ever be for yourself. It is so true to keep the ball rolling as new treatments continually reach the opportunity for all of us to continue to just keep the ball rolling.

@fritzo
It sounds like your surgeon is still ahead of the game with this surgical approach similar to the goals of Retzius sparing technique. It is unfortunate so many surgeons are old schooled. I still hear about open prostatectomies. I first started sharing about the new technique I was getting prepared for close to two years ago and it had been around but most knew nothing about it. Your surgeon seems also intent upon minimizing side effects from the surgery and is up to date on newer techniques. I think you will be find and hope you update quickly after your surgery. Best of luck

@surftohealth88 Good note about "promoting". And even without that crass motive, we can never forget that our doctors are human, subject as professionals to the need to know "facts" and hold onto them, sometimes before they deserve the name or in the face of (at least initial) counter evidence. It's just human, especially among people who are esteemed for a particular body of knowledge. One "tell" that this is happening may be when we observe enthusiasm - an emotion - come into a doctor's recommendation. I appreciate professionals who give me objectivity and leave the emotion to me and my loved ones. We have plenty as it is.

@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

@ctsenior Yeah, from what I hear, it's seems like it's 90 percent of RALP men end up limp. And, yes, I have been a bit obsessed about that. Thanks for the advice...good to have options for sure.

I'm 63, but I think of myself still as young. I know others look at my gray beard and probably think otherwise. I almost think Focal would be great for old men too...because if you want to kick the can down the road a bit and then do the heavy recurrence treatments, you still can.

If you're old, you probably aren't a candidate for surgery, so Focal might be great and then follow with radiation/ADT when it comes back.

Based on the info shared by @jeffmarc (thank you again!) from the UCSF Prostate conference on this Friday; UCSF finds on recurrence with focal was really staggering. "Overall focal therapy is associated with minor side effects, but high rates of recurrence both in- and out-of-field."

This bullet point from the presentation really seemed like a shocker....the UCSF Result for their first 135 HIFU patients was: "• 54% recurrence (41% in-field)."

Recurrence is higher than 50 percent, so that means you will have to follow with surgery/radiation/ADT or whatever choice you have. So, I'm guessing it does buy you time, but perhaps spread becomes worse. I don't know.

I really do appreciate that reality check. Yeah, dick at half or no mast, coming up. Sucks. But as a long-time buddy of mine told me this week who has complete ED but is cancer free after eight years , his decision was to chose life over cancer Hoping to do the same...

@brianjarvis Hey Brian, which of the virtual support groups do you find you like the best?
(there are no local support groups in my area, so it is virtual for me)