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Decipher Results and Outcomes

Prostate Cancer | Last Active: 18 hours ago | Replies (24)

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@jc76

@heavyphil
As you can see I put your I.D. is the reply post. I am replying directly to you. Mistakes can happen but when the same thing is done repeatedly it needs attention.

Several times I have received post from this individual stating I said this or that and he was saying what I said was wrong and fact checking me. I sent private message saying I did not state that. I asked please do not post that I said something that was not correct then start fact checking me. He came back with sorry I miss-read your post and you are correct.

When this recenlty happened again and was blantly wrong it needs addressing. I, nor any other, need to be fact checked when posting direct experience. It is our experience and what we are told directly from our medical providers and medical professionals to me specifically not an opinion or googled. I also don't need someone telling me I misspelled a word. I don't post what I googled I only post my direct knowledge from what is told to me by medical professional to me specifically on a a subject, treatment, my experience.

I will research subjects but any information I obtain from research I ask my specialists and doctors who are medical professionals with direct knowledge of my medical history, tests, diagnosis, and treatments. That is where I take medical advice from medical professionals.

I don't fact check others, nor say "I disagree" or don't do this, or do that, or try this, etc. I don't spell check others posts. I really come for comardariee and to communicate with others going through same isssues not to read I disagree, or that is not correct or this is this or that.

Example: My Mayo urologist told me that the increased infection rate for having biopsies done transrectal was 1-2 %. I posted that and I did not want to take a chance the 2% chance told to ME by my urologist. A poster stated he was told 1% but that he became the 1% and regretts his decision to have it done transrectal. I did not contest being told 1% (lower than I was told) as that is what he medical professional told him and what my professional medical doctor told me to consider with me specfically not who was right or wrong 1% or 2%. Also numbers a Lab uses for diagnoses and testing is relevant to that specific lab protocol. I don't need to google lab information or fact checking a major medical facility lab protocol.

There are tons of research out there and many contradict each other. I am part of a 25 million dollar research grant given to UFHPTI to conduct long term research into proton and photon radiation treatments as the information on them is all over the place.

From the very start of using MCC I always post I am speaking for me specifically and what I expererienced or had done. Everyone's cancer is specific to them. No one on MCC should be referred to as expert in prostate cancer. That inference is what monitors do no want on MCC saying MCC should never be a replacement of your medical doctors and specialists.

If I see a post that I do not have direct experience, tests, treatment, I do not try to provide information, google facts, or comment on. I limit my post to my direct expereince to me and what I personally expereinced.

I came on MCC to come out of my introverted personality to discuss what I was going through. I found out I was not alone and many things I was experiencing were not unique to me as I thought it was. I am on many other forums where I post my direct and specific experience with a subject.

I like to hope I pass on some inspiration to others from my direct knowledge and experience of my diagnosis, tests, my personal experiences through the my journey. Again what I learned is I am not alone in my anxiety, stress, and worry that I was experiencing. For that I will always be grateful to MCC.

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Replies to "@heavyphil As you can see I put your I.D. is the reply post. I am replying..."

I can certainly vouch for what you are saying: you only post what is pertinent to your own experience and that is what the forum should be all about.
I am not aware of any private discussions you may have had (ergo, the private part) between you and whomever, but I am glad you made your feelings known.
Keep up with all the great posts - especially if you are part of a study! THIS is the knowledge we all need. Best
Phil