Meeting others in person that have had a RARP/PC?

Posted by jayhall @jayhall, 3 days ago

Yesterday I had a PT session and while I was waiting to be checked in etc. another man waiting asked me If I was a patient at the Urology Clinic and I said yes. We struck up a conversation and he's 6 weeks out of his RARP with the same surgeon. We briefly exchanged information and agreed to meet up and chat etc about our experiences etc. Has anyone ever met others that have had a RARP/PC in person. I'm very much an introvert and not sure how to go about making a PC buddy in real life.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Interesting situation. I do have a neighbor that had RARP about a decade ago. I didn't know until I mentioned my diagnosis and his wife mentioned his history. But even then he didn't really want to talk about it, so I let it drop. Thinking about some of the discussions on this blog, I think I might be a bit hesitant to share in person some of my detailed personal information about ED and incontinence that I've shared (essentially anonymously) on this site. Urine releases and ED are not comfortable topics to discuss face to face (at least for me) with a casual acquaintance who I'll continue to see in social settings. However, general discussions about medical facilities, treatment options, etc I wouldn't have any trouble discussing in person. I'm not saying my attitude is right, but rather just speculating on how I might react if I met someone who wanted to chat about PCa in person. I guess I can understand my neighbor's reluctance to discuss his RARP. Of course, someone else might feel entirely different about the matter. Best wishes.
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I think that is a great idea. We'll swap war stories! I'm in the Orlando area.

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I searched high and low for this before my surgery and had zero success. I lucked into two guys that my pelvic floor therapist said were open to meeting and talking about their experience. This was at a time where I was desperately trying to find positive experiences since every testimony was doom and gloom. Evening finding an in-person support group was pretty much impossible. I landed on a virtual support group of local men, and every single one of them were long term PC patients with ongoing issues or recurrences. It was heart breaking.

One of the reasons I've made a point to remain as active as I can (without burning out) on here is to provide that voice of success.

I think finding people to meet in person is no different than finding success stories here - once you do your treatment and are in the clear you have no reason to participate in those activities. I can say that sometimes it's hard to read other very sad stories here and that can bring me down. And, due to the nature of this, I think finding people to chat with who aren't currently suffering from something is very difficult. Not unlike a church ministry, far fewer people are interesting in ministering to others through their own experiences than are.

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Got a neighbor that had radiation about the time I was doing salvage and we talk about it. Have a 12 step friend that was just diagnosed and I share info about my RP as he has a choice to make. During radiation 3 of us sat and talked about it and other stuff everyday. I feel communication is a powerful tool while going through this. In my sports association one of the guys is very high risk and has asked me many questions from where I started to where I am today. I welcome the thoughtful questions. The good stuff far outweighs the douche that implied I was no longer in tact.

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