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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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@surftohealth88 I'll definitely take those healing vibes and prayers-THANK YOU!!
Sorry-I got so many responses to my post, that I lost track of your early one....I just replied about 30 minutes ago, which gave me a chance to brag about my kids. Surgery is currently set for Tuesday afternoon, but if they get a cancellation, they'll move it up to Tuesday morning. I'll find out late Monday afternoon.
Some really good news- a PC buddy of mine who has been through it all (Focal, RP, RT and hormone therapy plus more) just texted me with great news from his PSA test... he is still in full remission. Super happy for him. Hoping to join the party.
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3 Reactions@surftohealth88 Yeah, it's a permanent decision. If I was still on the fence like I was Thursday night, I'd totally be making some calls. But, I've reached the point now that I just want it done.
Have I finished all the tasks I wanted to get done before? Big nope! But, I'm locked in. I really believe surgery is the only right option for me. Locked in....final answer. Let's go.
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2 ReactionsHi, I really feel for you like all the others here in this forum. We all have our personal issues.
I haven't read through all the messages, but enough "not to see" if you have had multiple second opinions. Making this decision on your own is pretty scary. If you have had second opinions from places like Mayo, MD Anderson, Solan Kettering or other centers of excellence, just ignore my ramblings, but remember you only have one life, and do the absolute best you can do to make it a good long one and do absolutely everything you can do to make the best choices.
If I read correctly, your procedure is in a day or two and if you have major questions or concerns, maybe it's time to do a reset and get every concern addressed.
My attending doctors were very happy I went and got opinions from the centers I mentioned above.
I hope you all the best and go in with eyes wide open.
Cheers Dave
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1 Reaction@bonanzaman Hi Dave, You are so right. Short version: I did my homework. Went to a center of excellence (Northwestern-Chicago) and had opted for surgery. Then, I got a HARD push from a moderator that I should rethink my decision and back out and pursue Focal therapy because it was so much better for patients. I now know that I am not a good candidate for Focal. I've got thrown by a wave, but I'm back up on my surfboard and confident with my decision.
But you are so right and thanks for your concern. It's not an easy path!
@fritzo You've got this. Best wishes on your journey. Starting out this is very overwhelming and I know I questioned everything, at least in my mind. The benefit of other peeps is invaluable. Some very good firsthand information and shared experiences of those that have actually wrestled with and had the procedures. I would suggest being weary of the occasional extremist "must does". Generally, if I haven't had a procedure I won't comment or will ask what it was like and how it went.
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1 Reaction@chippydoo Thanks so much for the good thoughts-it means a lot that in this disconnected world that there are so many caring people out. Very humbling. Tells you that you're not alone and the support definitely helps. In my family, I definitely did not want to create this stress for them all.
@fritzo - hey…I’ll be zonked out in the heart cath lab while you’re getting your prostate removed. Maybe we’ll meet up in dreamland and compare surgery notes.
Good luck on Tuesday, and I’m looking forward to your posts once you’re over the fence with this thing. Honestly, once I knew it was surgery for me, I couldn’t get it done fast enough. I hate waiting.
Good luck!
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1 Reaction@turtbean Holy smokes... that's pretty wild. Thinking they'll be giving me some crazy pain meds Tuesday...so hoping I might have some tripadelic "Lucy in the Sky with Diamonds: moments .
Yes, let's get through Tuesday and be done with it-I'm ready to be done with this phase (but not looking forward to recovery, but time for big boy pants (so to speak).
Good luck and keep us posted too!
@turtbean
Good luck in the cath lab. I had an angiogram in Nov 2005 due to a questionable stress echocardiogram. I was concerned afterwards about my plug in the groin where they sent the scope up the arteries. The doc had me in and out of consciousness as needed. He asked during it if I wanted to watch on the screen and I said no thanks. Fortunately I turned out only 50% blocked and needed no stents. I remember at the end before he made a comment before I was going back out under sedation that I would either wake up with a stent, wake up awaiting the surgeon to do a bypass in the immediate near future and be sent home or ready to go home. It turned out I got lucky door number three to go home, nothing further.