Is there a moderator?

Colleen is our moderator. @colleenyoung
She's lovely. Send her a Private Message (envelope icon in the top-right corner) with any issues.

Sorry you're having trouble.

@peterj116 Thank you.

Just to add.... Urologists & other specialists are great, but one thing they know little about is the emotional impact of all of this.
I can tell you from experience & most will agree, that our moods change daily & we can become sensitive to the most innocent of things.

We're allowed to. Some dude just told us we have cancer.
Around 30,000 guys die from this each year.
So this is totally the place to vent & be sensitive about things.
We're all in the same boat, here.
Only for some of us, the boat is full of pee.

Hi Peter Thanks for your reply. I know there is a lot of emotion going on here. I just don’t understand why people in a support group tell you that your doctors are terrible and that what you are doing is wrong, incorrect, uninformed, etc. It doesn’t feel supportive or helpful at all. I shared very personal information only to be told we were doing it all wrong, we needed new docs, our care was inferior, etc. And also being criticized for having a positive mindset which has carried me through this and has made my husband be able to endure this as well. Thanks again for your support.

Well... sometimes they are terrible.
We have no problem trashing the "experts" here, when we feel like a vent.

Case in point.... my urologist.
My physio put me on 5mg daily Cialis months before the surgery, to minimise the effects of nerve damage or surgical scarring.
I asked the urologist who was doing the prostatectomy if I should continue with 5mg Cialis.
"Oh, I don't believe in that".

Umm... what?

"Avoid coffee. It's a diuretic".
"No. you can eat & drink what you like".

I'm beginning to think that contradicting information is their source of amusement.
But sometimes these "specialists" are wrong.
So here you can say "My doctor said this. Does that sound right?"
Most of us aren't medical professionals, so can't give medical advice - but we can say "No, my urologist never mentioned that & I had no trouble".

@ucla2025 there is a world of PC info on the internet..I refer you to Dr mark Scholz.. https://pcri.org/mark-scholz

He has many You Tube videos which describe most all the serious prostate cancers..Gleason scores, metastic disease treatments etc...ADT Therapies , radiation treatments and chemo for very advanced disease...
Dr mark exudes hope and positive treatment options and NEVER says anyone is a goner...you can check your doctor's recomendation treatments against Dr mark's ..in very general terms...if it is totally different or you do not feel confident or not seeing PSA drop, then maybe a new oncology group is in order.
Lots of treatment options out there now...you are not alone...but having the right oncologist for you is imperative.

And Yes, lots of contradictory stuff about treatment in general.. for ex: Alpha Lipoic Acid...it helps destroy PC cell replication.. but should you take the supplement during radiation ?? some say yes, some no..same with Vitamin C...also, I was put on Erleada and Orgovyx early and couldnt tolerate the Erleada...many dont tolerate it well..so I had ask for Nubeqa..was told that "yea its ( Nubeqa) easier on most guys" so I thought " well why in F*** did you put me on Erleada then..it nearly made me crazy..???

@xahnegrey40 Hi thanks for your response. I am familiar with Dr. Schloz and have seen many of his videos. We are receiving state of the art care at UCLA and have confidence in our doctors, It’s serious business but we are on top of it. I don’t understand why people on this group keep criticizing what we are going through and believe that they know better than us what to do. I love Dr. Scholz outlook and encouragement, he’s a great inspiration. I never believed we were alone or that my husband is a “goner”. But some people in this group seem to think so. I don’t get it. We have a great UCLA oncologist.

@xahnegrey40 Yep we specifically asked for Orgovyx and Nubeqa due to concerns about side effects.

@peterj116 Your doctors might be terrible but that doesn’t mean mine are.