Definition of terms request

[elvismlv123]

Can we please define our terms so we can communicate better?We dont need the entire medical vocabulary but in order to understand where we are are and where we are going stepping back a little might help.

[Tall_Allen]

Here are some of the common abbreviations:prostatecancerinfolink.net/...

Which terms don't you understand? There are some consensus definitions, but some terms are more precisely defined than others. It would be better for you to ask about individual ones than broadly make a statement.

This document explains the basics of advanced prostate cancer and may answer a lot of your questions:

nccn.org/patients/guideline...

[elvismlv123 in reply to Tall_Allen]

I want you to know I do not have advanced PCa and I am 17 years into this. I know a lot others do not. In the advanced category other protocols are effective. So its very different and very scary. My interest is that my PSA also is rising but my PCa is contained. I am not on a roller coaster but maybe a slightly bumpy road.I find it troubling that men here are being shuffled about with this drug and that and that treatment is reactionary not planned and patients living 3 months at a time waiting for the next shoe to drop.I hope you truly understand what I am trying to say.

[Tall_Allen in reply to elvismlv123]

Well that explains your confusion. If you have localized prostate cancer, there is a different forum that you may find less confusing:

healthunlocked.com/prostate...

I think there is also a forum for men like yourself who are on active surveillance.

You may find that the following explains the terms that apply to your situation:

nccn.org/patients/guideline...

I believe that for men with advanced PC, it is a good idea to stay in the present moment, and not try to plan for future scenarios that one can only imagine. The state of the science changes rapidly, so planning is futile.

[elvismlv123 in reply to Tall_Allen]

I dont agree...planning is everything and I am in the right group and I am not confused.

[Hidden in reply to elvismlv123]

You do need to be cognizant that many men on this site get upset with non apc members posting....reading about ADT side effects is not the same has enduring ADT side effects. Same with radiation, RP and other systemic treatments.I understand the desire to plan but you will probably never require the treatments mentioned on this site except for Radiation and Radical Prostectomy. I believe that is the gist of TAs response.

[Tall_Allen in reply to elvismlv123]

You expressed confusion in your post: "Can we please define our terms so we can communicate better?... in order to understand where we are are and where we are going stepping back a little might help." I assume you were using the royal "we" since you only speak for yourself. But if you are confused, please ask clarifying questions. And I hope you do so on the patient forum appropriate for you.

[elvismlv123 in reply to Tall_Allen]

thank you..we are two different frequencies and you are preaching to the choir

[joeguy in reply to elvismlv123]

Unfortunately not all treatments for advanced prostate cancer are as effective as we hope they would be. You may plan for a particular drug to work for 3 or 4 years, but then you discover it only works for 3 or 4 months....being "shuffled about with this drug and that" is the name of the APC game Im afraid....... hopefully you will not have to experience it.

[elvismlv123 in reply to joeguy]

Thank you for an intelligent response.I understand this is a puzzle and a lethal danger. That is why I am here. I dont like what I see going on and I am trying to inject some logic to it.I feel after 17 years of my journey I have some skin in the game an I want to help.I am not here to hurt anyone's ego or push them to do some asinine thing. I t is obvious in some way our bodies have failed us.I too was misled and if I didnt question everything I would have been long gone.I dont see that happening here.

[elvismlv123 in reply to elvismlv123]

I am not a Dr Bob Leibowitz total fan but he said something about 2004 . He asked a group...I am paraphrasing who do you think will have the best chance of survival............Naturally its an impossible question to answer...He said those of who always look for a new effective TX protocol. Now I may be bonkers on this and he said something totally a field but I align with this type of thinking.Dr Bob said his protocol was not a cure and some opponents of him in the end said it was. He never agreed.Of course it wasnt but it was a damned sight better than anything else. It was somewhat science based. Being in the arena of no cure and a disease out of control, doctors have no impetus to save anyone. Its like that with cancer in general.Are you not willing ask what is your success rate with this protocol and why choose xyz an not abc?Is he to say ...you know your situation...I got nothing but its worth a shot....

[tango65]

healthunlocked.com/advanced...

[elvismlv123]

Thank you...we are at a loss to compete with abstruse medical terms and such and odd ball abbreviations. Normal language suffices. Each of us gets exposed to our own corner of this world and have our own limited vocabulary. I want to have everyone fully understand their treatment,their medicines and their expected outcome. A lot of us do know those things but I fear many do not.

[elvismlv123]

Sorry you dont understand

[rscic]

Bottom line here is some sites have been suggested to help with your original question. I hope these sites are helpful. I am pretty sure at least some people on this site will be willing to answer any other specific questions you might have.