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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.
Replies to "Hi Peter Thanks for your reply. I know there is a lot of emotion going on..."
@ucla2025
I know for me and many others the mental side of having cancer causes a lot of anxiety and stress. You come to MCC to read the personal and direct experiences of others and for those on MCC to be an inspiration.
That my friend is what I see your post are about. Just know many others have had serious and long time dealing with serious prostate cancer with many side affects and problems. Sometimes that brings a different outlook and different type of posts.
I think which I try to do is every time you post asked am I giving just my personal experience with the subject and I trying to be an inspirations to others. Now the offset of what I just typed is those who are just starting their journey and their personal expereince and knowldege is very limited not able to be an inspiration as they have not started their journey beyond diagnosis or first sign of the issue.
Thus the mental side of having cancer is very important to thsoe just starting their journey. If I am in doubt of how to respond to a post I clink on the three dots and asked for guidance from montior and/or director to help me stay within the guidelines of my personal expereinces and being an inspirations to others.
@ucla2025
I can understand your frustration. Sometimes people can project their own frustrations on others, wishing they had not made the choices that they made. Even though their comments have not been helpful for you, I think their perceived insensitivity is more their passionate desire to help you be successful in treatment approach.
That said, I hear ya! I also get frustrated and have to stop going on some forums for all the same reasons as you. I found some relief by watching videos of experts talking about life threatening illness and such of I go on forums not specific to prostate cancer. That way you get less feedback on specific cancer treatments.
I am sincerely sorry you and family are faced with this illness. I trust you will navigate through it and find continued peace and happiness as you do so.
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@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..???