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

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Update: I am still shocked by what happened in my support group session last night. I feel like the doctor presented an overly-rosy profile of the effectiveness of focal therapy and did not convey just how small a group of patients actually are appropriate for focal therapy. He was incredibly convincing and incredibly enthusiastic.

And, then, after I had been convinced by the doctor's presentation that choosing surgery was absolutely the worst decision that I could make, having the person running the session telling me repeatedly that I should cancel my surgery if I wasn’t confident in my decision because focal treatment just might be the best option for me. He even spent some time with my test results to see if I qualified for focal therapy.

So, yeah, I was put on a roller coaster. I reached out to you all and you answered the call. I now feel confident in my decision to go with surgery and that focal is NOT a good choice for my situation.

As it turns out, three months ago during my initial visits, my wife kept notes and dang, both the surgeon and radiation oncologist in those long consultation sessions said that focal options were not appropriate for me. I feel pretty stupid now that I didn't retain those comments, but I truly was in the fog and shock of early diagnosis.

The oncologist said the “advantage to those quasi-experimental treatments is maybe it would work but disadvantage is you lose time to treat and give time for it to spread. There’s not a lot of data on those treatments yet.” The surgeon said, “Focal therapy an option if only just a few cores in one location, but you are probably not a candidate for this based on location.”

I’m in a so much better head space - heartfelt thank you to all.

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Replies to "Update: I am still shocked by what happened in my support group session last night. I..."

@fritzo "He was incredibly convincing and incredibly enthusiastic."

The word "Incredible" is incredibly 🙂 overused, but here it is the correct word. 🙂

@fritzo

I think focal therapies can be the future of treatment. But results show we aren’t there yet.

@fritzo
Dear Fritzo, it IS overwhelming , the whole process is just horrendously stressful - so much information and so much to learn in such a short period of time, so many things to consider; what, when, with whom, where, how, why, and than some 🤕. It happens to me to even now after so much reading and learning - there are days when I feel like I am tabula rasa ! During appointments the pressure was even worse and between my heart pounding and me trying to concentrate on questions the risk of loosing notes became real issue, so early on I decided to start recording conversations. It was a life saver ! It helped me go through consultations at latter time and refresh my memory with every detail.
Also, you have to keep in mind that presentations like one that you saw are very often self promoting, I mean even some popular videos that everybody watch here are basically promotions for that facility or that person . Nothing bad about promoting, but everybody (meaning "consumers") has to be careful and do their own research and listen to ALL sides and than make their decision. Also, decisions are not written in stone - if you wish to have some more time to ponder (week or two ) , that is OK too 😎.
PS: I forgot - did you ask your surgeon how many RPs he performed and what is his record with ED and incontinence rate ? If he did thousands and with great results, you are really in good hands.