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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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@fritzo
I forgot to mention you do need to install goto meeting on your device in order to attend the meeting. The software is free on every platform.
The session name to join the session is answercancer
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1 Reaction@jeffmarc You know what, I fall into the intermediate risk group (3+4, contained, Decifer .61) Not sure it would be right for me to drop in on the high-risk group?
@jeffmarc That's a poweruser tip-thank you!!
@oldgreenpaint Wow, I guess that's good news and bad news at the same time. Glad you got through though.
@chippydoo Funny thing....a buddy of mine who has had various surgeries over the past 15 years (hiatal hernia, knee replacement, carpel tunnel) said we're all just used cars. The parts are gonna wear out...so you gotta replace 'em (if you can).
That's my goal - six weeks to something closer to normal. Gonna do my best to do al the right things post surgery. Giving me hope there-thank you!
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1 ReactionI just want to add that we had here other members that postponed RP for a month or so even though they did not change their mind - they just needed some time to become emotionally "fortified" . If you need 2 weeks or a month to collect your thoughts 🙂 and find additional sources of support - it is completely OK to do it. Patients cancel surgery for many reasons, I am sure that your hospital is used to that. 💗
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1 Reaction@surftohealth88 Oh yeah, this sounds like me too. I actually had to start a blood pressure med because of stress. Hope to go off of it later. Thanks for the good advice.
For notes; I totally relied on my wife because I realized if I focused on note taking, I would stop the thinking process on questions. I even had my daughter and son-in-law listen in via phone for two of the early consults (they are both doctors at Stanford-one internal med and the other family practice). To continue the dad brag, my son, who is a PMNR doc, will be with my wife while I'm in surgery to keep her in a good place.
Yeah, my surgeon at Northwestern didn't actually have a number for the number of surgeries, but guessed it was way over 1,500...but I suspect it's a much bigger number because he has been there something like 15 years and I believe is their number one surgeon for surgeries performed. He leads their fellowship program.
The procedure he does is a fascia sparing approach that spares the bladder neck and preserves more of the fascia area to help with continence. There's a video of the actual surgery, but I can't bring myself to watch that.
I'm in a much better place now. I be lying if I said this "promotional" presentation on Focal was a good test for me. But, now know that I don't qualify for Focal. I'm locked in...
@fritzo
You are right you don’t fall into the advanced group. There’s a low intermediate group that would be what you would attend.
The low intermediate group meets on second and fourth Mondays of the month at 5 PM Pacific time
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1 Reaction@fritzo
I am glad to hear that you feel much better today 😃🌺 !
I do not know if you saw my post here where I mentioned making a "recording" of appointments - I find it very useful, just wanted to mention that if you missed it. : ))) I can hardly keep myself from fainting when I talk to onco doctors lol - and remembering it alllll was just not possible for me. My brain at those moments is in another dimension altogether, floating in iridescent plasma of disbelief and helplessness. 😋
At what time is your surgery ? I will be sending healing vibes and prayers your way : )))) and I am sure many other members here too ! There is a GREAT chance that you will be (like many other members ) astonished of how uneventful the whole procedure is once you wake up : ))) !
Wishing you the best of luck and complete eradication of PC !!! 🍀
@jeffmarc Good to know-yeah, I wouldn't want to me the kid showing up in the wrong classroom on the first day of classes.