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Devastated by support group meeting: I'm doing everything wrong
Prostate Cancer | Last Active: 4 hours ago | Replies (37)Comment receiving replies
@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.
Replies to "@wheel1 So much collective knowledge here in concise form. • Making a treatment decision for patients..."
@fritzo Yeah man, that must have really knocked you for a loop…like being wheeled into the OR and seeing that your surgeon has been replaced by a guy wearing a Smithfield Ham apron…😳
Look, Focal can be good, but is it good for you? There are so many variables that can take you out of that sweet spot where it will be totally successful - as if any treatment can do that.
I would go over all your pre-op testing, biopsy, Decipher score, etc. to see if Focal might even be viable for you.
No amount of cheerleading from anyone - including us - is going to erase all doubt in your mind.
I have always said that the most important thing is to be totally on board with your choice of treatment because regret cuts deeper than any scalpel.
Phil
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@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