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.

@ucla2025
Colleen Young is the Director of MCC.
There are volunteer monitors who also monitor MCC.

@ucla2025, There are guidelines everyone on MCC have to follow. The most important ones are the guideline to share your personal experience and provide inspirations to others. No one on MCC is a medical expert on prostate cancer. And even if they were MCC was designed for medical advice just sharing your personal experience on your journey and what you did and learned on that journey. Even if a person was a medical expert on prostate cancer they do not have your full medical and mental health history, nor have they examined you thus MCC is not for medical diagnosis, prognossis, etc.

Giving advice shoud be directly realated to the person personal experiences with their journey with prostate cancer. Fact checking others or dismissing another by right and wrong is not purpose of MCC. I try very hard to limit my post to my direct experience. If I do post something it is directly from my experience and or what my doctors and medical experts have advised me and guided me with their medical expert advice.

I hope you will continue with MCC. If you have a issue with a posters comment to you, you can click on the three dots and report it. One of the monitors or Director (Colleen) will read and address it if needed.

Final thought, having any type of cancer is placing the individual under tremendous stress and anxiety. MCC is here to share personal direct experience and inspiration to help others, not fact checking, spelling, I right your wrong post, nor that citing a web site is the correct treatment for you. The correct treatment for you comes from your medical professionals and your own personal decison to do what is best for you and your family not what was best for others or others telling you what to do or not to do.

I have learned a lot on MCC. When I got disgnosed with prostate cancer I was not on MCC. I learned about it at a prostact seminar at Mayo Jacksonville and joined. I am lucky to have superior, expereienced and dedicated medical experts at Mayo Jacksonville and UFHPTI treating me. I am sometimes overwhelemd with medical and mental health information given to me by my medical and metal health experts. But at Mayo their motto is "Patient First."

It is good to research or listend to posts but when you have doubt or questions about what you are reading or being told please asked those questions or information you have read with your medical experts. Again they are the only ones with your full and complete medical and mental health history.