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Devastated by support group meeting: I'm doing everything wrong
Prostate Cancer | Last Active: 4 hours ago | Replies (37)Comment receiving replies
@fritzo, wow. Thanks for taking the time to write your experience. I can't begin to imagine the distress that the presentation caused you. Thank goodness the moderator followed up privately immediately after the session and again this morning. That was the responsible thing to do. I sure am glad he noticed your distress.
I think there is a a good lesson for all the guys and their significant others to learn from this. We are all different. Prostate cancer unites the members here, but each person is different, each case is different and everybody makes the decision that is right for them with the best information they have and with the guidance of their doctor(s).
Each expert is going to be most informed (and passionate) about the treatment they offer. Similarly each man here has the most personal experience with the treatment path he chose, and is similarly passionate and supportive in that option.
For prostate cancer, there are oten several effective treatment options available. That's such a great thing. But it also puts a burden on the patient to make their choice AND to be comfortable with it. That's not easy.
@fritzo, have you reached out to your surgeon to share the experience you had and to ask questions to feel ready to proceed? How are you doing now?
Replies to "@fritzo, wow. Thanks for taking the time to write your experience. I can't begin to imagine..."
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@colleenyoung
Thanks for the support Colleen. You are so right about the moderator. I know that he realized that what happened was completely the opposite of the purpose of a support group. I so appreciate that he reached out. But, I also know everyone in the medical system has their own bias. They are human. In his case, I know that he is opposed to RP in general because he treats sexual function. So, his view that avoiding RP is the goal came through clearly to me, even at the last meeting where he initially reccomended active surveillance even though I've had two surgeons and a radiation oncologist tell me I am not a candidate for AS.
I have not reached out to the surgeon because I think the question is really, do I move forward with my decision...or do I put on the brakes completely and cancel until I can be evaluated for Focal. I don't think he could answer whether Focal is right for me without re-evaluating my case.
I've been so fortunate. I'm super thankful for this community. I've chatted directly with three PC patients today. One is 100 percent unhappy with his surgery decision 16 years later. He is still angry that the doctors didn't fully inform him of all of the side effects. It's been tough. Another patient friend talked with me and he is 100 percent satisfied that his surgery was his best choice eight years later. They both suffer complete ED. The third person started with Focal, then had to have salvage RP, hormone therapy and radiation. He feels he should have started with RP, but made his decision to do Focal based his life situation at the time. He's in a great place and enthusiastic about his life.
Take-aways; everyone has a different story. We're gonna have what-ifs. My decision was confronted and I guess it has strengthened my resolve. My insurance likely won't cover it, it may not be right for my diagnosis and there isn't enough data yet to convince me that it isn't just kicking the can down the road.
Is it the right choice? It's going to have to be for me.