Decipher Results and Outcomes

@jeffmarc
We on MCC are not professional medical experts, specialist or doctors. I post that all the time I am not and thus just my personal expereinces and direct knowledge of my diagnoses and treatment. I would not tell others what to do or not to do, diagnos antother's medical condition or what specific treatment they should get for them.

Even getting diagnoses or recommending specific medical treatments from medical professionals, medical expert, doctor, or specialist that are not your personal doctors and/or do not have the patients complete medical history, all medical tests, procedures, medical and mental issues, and information needed to do so should be cautiuos if applicable to them personally.

I recently was on MCC in a different forum about heart rythm. A poster posted what medication should I take and listed the medical issue. The mentor answered that MCC is not a forum to optain medical advise. It is a forum for others to share their expereinces with the medical issue, their specific personal journey and provide inspirations to others.

You posted: "You also said your surgeons equipment didn’t go below .2, after getting exactly that 1 month earlier."
Where is that on my post? My surgeon who did my biopsies never mentioned to me anything about .2 levels on Mayo equipment nor anyone else.

I posted a reply to another poster what my Mayo PCP in our last consultation after my PSA test came back at .22. My PCP advised Mayo Jacksonville Lab does not give number below .1 as below .1 would be considered undetectable per Mayo Jacksonville lab. He did not advise what other labs do or give numbers just my specific test and what Mayo Jacksonville lab does on PSA testing.

You also posted: "You are on Orgovyx , if your PSA has a significant doubling time you would be considered castration resistant, and get one of those two drug types I mentioned."
I am NOT on Orgovyx, never posted I was. And if I was I would be relying on what of the most prestigous medical facilities and specialist to guide me on what my treatment options were.

When I posts I make sure I inform posters I did not have hormone treatments, the reasons why my R.Os (two separate consultations) did not put me on is specifically to my prostate cancer, diagnosis and risk level. Thus I cannot comment on hormone treatments from my personal expereince. I also say this about prostate removal as I don't have any personal expereince with it either.

What I do is mentioned what I did and had done and why I personally made the decisions. I always mentioned talk to your medical professionals about this or that and see if applicable to them. If you don't like what they say or are recommending I personally would get second opinion. I posted that the reasons I personally got a second opinions was to have the added diagnosis and treatment options coming from different medical professionals not because I did not respect the information given to me by either consultations experts.

I post what my personal expereinces with something. I would not post something I read on goggle. I learned about Decipher tests, PSMA tests, bone scans, MRI with contrast, transpernial biopsies with MRI Fusion, and phtoton and proton radiation I learned from my expert medical professionals and personal experience. I only post my own personal expereinces with prostate markers, Space-Oar and getting 30 rounds of proton radiation. I also post my personal side affects, and my consultations and follow ups emphazising this is me personally and not what you should expect, do. or is best for you.

Everyone has different levels of qaulity of life expectations, pain tolerance, mental outlooks, stress and axniety, and what is best for them is what is best for them and their personal journey with prostate cancer. We are all different with each cancer diagnosis, specific expereiences, tests, side affects, outcomes a specific and personal expereinces.

You replied with information directly related to an answer I gave somebody else that started this conversation. The way you responded made me think you were the person that originally asked for assistance.

Since I thought you were the person that started this conversation I used their information to reply to you.

Excuse me!

The information I provided was directly applicable to the person that started this conversation, If you had made it clear that the treatments you were provided, and your medical history related to PC, was different from the original poster, I wouldn’t have replied the same.

The information I provided was accurate. Castrate resistance can occur with any ADT drug. Doctors do go by the PSA doubling time to decide whether to move on from ADT.

Most of the things I post are based on my experience After 15 years with four reoccurrences. I also post based on experiences I have heard from other people After attending weekly advanced prostate cancer online meetings for at least four years. I have heard all different types of prostate cancer cases and treatments for it. I don’t guess, What I post is also based on many years of knowledge from attending dozens of online cancer seminars, hearing other people’s treatments, and what I have experienced. If I recommend a specific treatment I say to ask your doctor.

@jeffmarc
If you put in at top of a post the specific I.D. of a poster you are talking to that poster specifically. If you meant to talk or refer to what another poster posted then put their I.D. in there not mine. If you want to speak generally then don't put in I.D.'s and be generic not saying you said this and you stated that.

I do not need to make clear my posts it is your post that was specifically directed to me and with incorrect information addressing what you said I posted which I did no. Each medical labs are different and what one has for guidelines might not be at another. That is why I only post what my medical doctors advise me of the specific lab they use. I have no idea of the details of what other labs have for guidlines and numbers nor would I infer I do.

When someone hasprostate removed and/or hormone treatment I respond to them I have not had hormone treatments and did not have prostate removed so can't comment as don't have direct experience. I will give feedback on direct experience I have had on diagnosis, tests, treatments, my specific side affects, medical institutions, doctors, only.

On another forum the Director on MCC and mentor stated the purpose of MCC is not to come for medical advice. It is for sharing experiences and provider inspirations to others. Recently the Director again posted the guidelines for MCC emphasizing MCC should not be used to replace your medical doctors and specialist advise, information and direction of what is best for you.

We have to be careful on MCC to not say do this, or don't do that, or say take this or that, or you need this or that. Or infer in anyway we are medical experts in a medical topic. We cannot diagnose a person from a post no should we try to. Nor should medical professional try to do diagnose and guide someone without a complete medical history and testing of that individual specific medical information including mental health.

Your personal expereince with prostate cancer in extensive. It is different to advise a poster to ask your medical providers about treatments, tests. what this means or does not mean for that specific person. I do not go to google to get my medical diagnosis or get a medical question answered. I will use professional medical doctors to do that. If I research something I will ask my medical providers about it. If I want more information and or clarification will seek second opinions.

Many on MCC have attended seminar, done research, gone through second and third opinions. I have learned a lot from others. However what I learn and questions that arise from discussions and research I asked my medical doctors how the apply to me specifically and what this or that tests means specifically to me. That is what Director of MCC meant that MCC is not there to replace the medical diagnosis, tests, treatments of medical professionals and what they mean specifically to you.

I wish you well in your continued journey with prostate cancer.

Hey JC and Jeffmarc, this is a great forum and both of you are frequent and very informative posters. I have never felt that either of you have posted any info other than that directly related to YOUR own experiences - and that includes your own diagnosis, treatments and your respective involvement in other forums, panels, etc.
I think we’ve all had to post “my bad!” Many times since our replies frequently don’t go to our intended target poster or we simply get caught up in the discussion and wind up replying with incorrect information.
Sometimes I post and then realize that many others have done so before me (because I got excited and did not read all the previous posts) and my post is either redundant or less than informative. Also, there is “reply” and “comment” which never cease to cause confusion, at least in my case😳

@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.

You replied with information directly related to an answer I gave somebody else that started this conversation. The way you responded made me think you were the person that originally asked for assistance.

Since I thought you were the person that started this conversation I used their information to reply to you.

Excuse me!

The information I provided was directly applicable to the person that started this conversation, If you had made it clear that the treatments you were provided, and your medical history related to PC, was different from the original poster, I wouldn’t have replied the same.

The information I provided was accurate. Castrate resistance can occur with any ADT drug. Doctors do go by the PSA doubling time to decide whether to move on from ADT.

Most of the things I post are based on my experience After 15 years with four reoccurrences. I also post based on experiences I have heard from other people After attending weekly advanced prostate cancer online meetings for at least four years. I have heard all different types of prostate cancer cases and treatments for it. I don’t guess, What I post is also based on many years of knowledge from attending dozens of online cancer seminars, hearing other people’s treatments, and what I have experienced. If I recommend a specific treatment I say to ask your doctor.

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