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Devastated by support group meeting: I'm doing everything wrong
Just absolutely devastated last night during a PC support group meeting. I thought I'd share with the support group (via zoom) that my RP surgery is in four days and was hoping I might get a few words of encouragement before the big day. Instead, this support group session was an informational meeting on Focal Therapy from an expert.
To me, what followed was 90 minutes of medical information with the slant that RP surgery is absolutely a terrible thing to do as first treatment if you can do Focal and that people should start with Focal therapy and not suffer the barbaric side effects of surgery (I'm informed, I know what they are).
I was a zoom participant and my audio was turned off and I never had the chance to say, "Hey guys, I'm doing surgery in few days and now you've got me convinced that everything I'm doing is wrong." I was despondent because I thought I had my mind made up and now experts were saying that was not the right thing to do.
It was a rough night.
Let me explain: This meeting turned out to be entirely a presentation by a director of a Focal Therapy program where they offer five different focal therapies. His program was loaded with fantastic information.
But, one of his key messages that I was taking away is that Focal Therapy for those that qualify is that you don't have to unnecessarily suffer the indignities of impotence and incontinence if you choose focal therapies...or at least much less risk. They assess your case and then pick the most appropriate focal therapy. Later, down the road, if your PSA starts going up, you still have the full option of RP. But, another key theme is that you really want to avoid RP because of the horrific side effects. So, explore this new, modern approach that is the forefront of treatment that is Focal Therapy.
At the end of the session, the moderator saw I was waving my arms (my audio was muted from the feed during the entire session) and leaned in to see that I wasn't waving goodbye...I was upset. He could kind of hear me. At first, the discussion was like if you're not 100 percent confident with your decision, then contact your doctor and get more info and if not confident, cancel the surgery....even it it's as late as rolling in the operating room.
However, he very graciously got my phone number and called me directly, which I'm super appreciative. We were able to talk more. At first, it was an assessment of whether I would be a candidate for Focal Therapy (contained to one lobe of the Prostate, no spread). So, yeah, I probably could be a candidate. But, then I think he realized that an entire session on Focal and how glorious it is with no opportunity for "support" from the group for those at a surgery turning point could have left me "conflicted' just days before my surgery.
I reached out to a PC buddy who was really helpful. He shared his journey and some of his thought. The turned out to be a real lifeline.
I'm still conflicted, but thinking I'm going forward with my surgery. Holy smokes, that was not what I needed from a "support" group days before surgery to be convinced that I'm doing the absolutely wrong thing.
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@dinu I am 100 percent signing up for AnCan- thank you!
@fritzo
When is your surgery?
@dinu Looking at their website, I see this is one of their principles: "AnCan does not mix education with support – some people want to listen to a presentation, others need support. Mix the two and there is not enough time for either – and guarantied unhappy customers!"
Yeah, I was looking for support and what I got was 90 minutes of education with no opportunity to ask questions. They are so right about an unhappy customer!
@heavyphil Dang-you got the gift of hammering points in one whack!
• Ham handed surgeons-no thank you-that would be terrifying! Bad joke back atcha: Why did the ham go to the doctor. It wanted to be cured. (ouch, sorry)
•Regret cutting deeper than any scapel - dang, so true, I talked with a fellow yesterday who has lived with 16 years of regret and anger. Definitely hurting.
I'm in a better place now. But, dang, I think in this case they forgot just how fragile /stressed people can be when they pull the rug out from under you when you think you might have it figured out and surgery is imminent.
@vancouverislandhiker Thank you for that. It really does help in a big way. Some positivity after that experience is so needed.
Reluctant brotherhood-aptly named. I am totally checking that out-thank you!!
@wheel1 All I can say is that you are a warrior. That is amazing about your 18 year remission. Not the same, but my wife has diagnosed 26 years ago with a serious lung disease (PH). They told her to make her plans. She's still hanging in there and now there dramatically more amazing treatments for PH then way back when (basically three then, Flolan, lung transplant or a few rare responders to CCBs, which she was).
I guess the task is to stick around long enough that we can take advantage of the new technology. Safe travels on your journey!
@wheel1 In three days-so time has run out unless I want to go radical and cancel. But, it's a major center and the surgeon is incredibly experienced and leads the fellowship program, so I'm confident in his skills.
@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
@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.