Cancer support group last night - we have a ways to go on education....

Last night we had a monthly prostate cancer support group meeting at a local cancer "community".

I was a little surprised how certain some of the new folks were on surgery, while not having much understanding of Gleason score, staging, and how those metrics guide the treatment decisions. The certainty seemed to be based on the doctor's assertions.

There wasn't a lot of time to go into much detail with them, and I'm always a bit wary of challenging people's treatment choices. That's so personal, and at such a high stress point in one's life, that it seems important to be gentle in education.

Uniformly, they were convinced by the standard urologist's line, "If you do surgery first you can always do radiation. If you do radiation first you don't have any follow up options if it doesn't work.". It would be an entire dissertation to dissect that, and the meeting's not very conducive to that. I did make the point that surgeons will always recommend surgery, and to consider all choices.

I highly recommended this forum to all of them. Some cards with the website info seem like a good idea to hand out. Have any of you done anything like that?

Hopefully, some of them will find their way to this helpful forum!

Some years ago we did cards for another medical-condition support web site. Only a few of us ever used them, but there were no local support groups for that sort of medical condition. Might be of use to a few of us here, if we are active in local groups. I typically attend the local UsToo PCa support group a couple of towns over, and may try out another local group. Might be worthwhile. The other group site actually has a logo and all, so card design was easy. Here. . . don't know.

I also know how you felt at the group session. If you look back at some of my earlier posts, I posted about my disappointment at the content of presentations at a group meeting, and was disappointed that there was little to help a newly diagnosed patient. The local group closest to me is comprised of seemingly all guys who were diagnosed and had surgery 8-12 years ago and are now dealing with failures and disease progression. They, as well as the group facilitator, had no clue how to help a newbie learn enough to make a decent treatment choice. I guess I could try, but then I'd need to find some newbies to help, and right now that's not my "thing."

Regardless, I'd be interested if anyone else wants to proceed with a "calling card" for the group.

Redwing
That seems to be very common. I have also spoken with guys who were diagnosed 5 or more years ago that don't know their Gleason score.
As mentioned, kudos on the outreach. I think with the research you've done and what you've picked up here at HW, you have a lot to share.