From tonight's local support group - question - focal radiotherapy?

Keep going back, don't take yourself or your advserious to seriously. You may help one person. Drink ( what ever ) eat some M&M's and be available.

Thanks, Allen. I didn't want to call BS on two of the guys during the support meeting, but I did express skepticism. So much misunderstanding, we non-medical types may struggle to follow what the docs are saying.

This is a big reason I encourage people to come to this forum!

Paxton -

I agree with you that the purpose of support groups is to provide peer support and encourage patient empowerment (much as HW does). In our groups, we use a trained psychotherapist to run the meetings. The main purpose is to air all the stuff that is troubling us and he does a great job in getting guys to open up. Of course I can address some of the easy medical questions, but for the most part, I tell them, "that is a great question - one you should be bringing up with your doctor." I never tell them what to do, but I can tell them what some options may be, how to get more informed and who to talk to. Men are often reticent to bring up issues with their doctors and sometimes they just need a nudge to do so. We also talk about managing anxiety, depression, the waiting, and the expectations of others. (They are GREAT, btw, for guys on AS who get universal encouragement for sticking with it, often in the face of friends or relatives who cast doubt) Among us, we know a lot of doctors in the LA area and can be a good source for referrals.

Tall Allen - I truly wish I lived near you so that I could attend a support group such as you describe. I think I have the medical end of things pretty well under control for now, but the mind mess often clouds the issues. The only support groups I've found in my area (near northwest Chicago suburbs) seem to be focused on two sub-groups. The majority of members are long-term patients, many now having primary treatment failures and seeking salvage treatment advice. A few are newly diagnosed men, seeking help in making primary treatment choices. Most of the advice I've heard to these men is well-intentioned but out of date or just plain wrong (like the group leader who heard my pathology report of 3 cores G6, 1 core 3+4=7 and asked me when I was going to start ADT). Virtually no time is spent in dealing with the 600 lb gorilla who lives in the far recesses of our minds. The presentations I've seen are all focused on medical/technical topics like radiation therapy for organ-confined PCa (but this RO chose not to discuss SBRT or HDRBT, both therapies not offered by his hospital), new advances in chemotherapy for PCa, genomic and genetic testing for PCa, etc. There was even a very good presentation, with a lot of audience participation, regarding the sexual side effects of the various primary treatment options. There is just no time spent on understanding the emotional impacts of this disease and where men can look for help with it.

I've visited two different UsToo chapters and continue to attend one of them. Does anyone (TA?) know how I might find out if there are any groups that do a better job of helping men find the emotional support to go with the medical/technical support?

The groups I attend are run by the Cancer Support Community, which is the largest such organization in the US. Our facilitator compiled a list of prostate cancer-specific groups they run in the US. I can ask him if he knows of any in your area, or you can try googling them and Chicago to see if there are any near you. They have a policy of not giving out or endorsing medical advice. In fact, when a new guy comes in, he usually makes the disclaimer that "Allen does not represent the views of the Cancer Support Community."

Of course, when I hear a member spouting "alternative facts," I speak up. That usually happens when new guys come in and they have only talked to a urologist. I encourage them to seek out other professional opinions. I typically don't get into as much detail as I might in HW or in my blogs, because that's not the purpose of the meetings.

We voted not to allow doctors to pitch to our support groups because that's not its purpose. They do sometimes have speakers in a space open to anyone at different times from our meeting, but they are not usually well attended. They tend to be sales pitches.

I proposed to the CEO a different approach for speakers who want access to us. I told her I would be happy to moderate a "tumor board" with invited local experts in radiation oncology, urosurgery, medical oncology, radiologist, nuclear medicine, active surveillance expert, and a focal therapist. I would present difficult cases that might include controversial treatments. My purpose is for patients to understand that decisions are not cut-and-dried, that knowledgeable doctors disagree, and the importance for the patient to go and seek out varying opinions.

Paxton -

Here's the link for the CSC PC support group in Chicago. They say it is co-sponsored by UsToo - so it may be one you already attend.

www.gildasclubchicago.org/calendar/133/prostate-cancer-ng?s=1492729200&e=1492734600

To me anytime there are more than 2 or 3 in any face to face group...as the numbers increase pretense nudges genuiness further and further into nothingness...camps...cliques..:group think...stop n chats n post chat grimace...it's just not comfortable for me...then folks...sense that...wonder why:..even tho they know...and then...and then...