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.
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
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@turtbean Oh, you just described my abdomen pain perfectly....it's internal abdomen soreness just above the groin where you feel like you've been punched and kicked multiple times. It's better, but slow going so far. When I had spasms, it rolled right through this section, but really didn't feel like the bladder location. Fortunately, those have mostly subsided.
Always a party!
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4 Reactions@fritzo Oh man, I had zero pain but if I coughed or cleared my throat my abs felt like an MMA fighter had backed me into a corner and used my body as a speed bag.
Phil
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3 Reactions@heavyphil Yes, yes and yes! I'm at the point now where I don't have the rolling pain, but it's now triggered by bending, twisting and yeah, coughing. Guess I'll have to wait for a while for the MMA rematch 🙂
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1 Reaction@fritzo ,
glad you are out of the surgery and full of humor. This helps with the healing. Make sure you stay hydrated. Have you had your first bowl movement already?
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3 Reactions@dinu Humor, sometimes it's all we got 🙂 Have laid the golden egg, so that is good. It wasn't impressive, but don't think there are style points on this journey. Thanks checking!!