Will PSA ever hit 0 or close to it?

Posted by beaquilter @beaquilter, Dec 12 12:07pm

I think you "regular" guys on here, know my husband's story.
Stage 4 diagnosis in Feb. Gleason 8 and 9s, PSA was close to 300!
Firmagon and Zytiga and prednisone and chemo over the summer.
PSA is still trending down but it's 0.33 now, last month it was 0.37, before that 0.44 and maybe before that 1 something then 2 something and so on, but the last few months it's slowed down drastically and we're worried that it's bad news, that it will never hit close to 0 (undetectable), I try to be positive that it's still going DOWN! but I've read online that if it's not 0 by 6-9 months, it's not a good future outcome.....I also read that Firmagon IS better than Lupron in these cases. So he'll stick with that for now, unless it's insanely $$ next year as our insurance won't cover it.
Anyways, I don't want replies about the Lupron, just what your thoughts are on the PSA levels.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for jeff Marchi @jeffmarc

@jc76
You disagreed with this

You posted: "Actually the medical community generally considers < .1 as undetectable." Thus an inference you are providing the medical community.

The article I referred to later said

The American Urological Association (AUA) and the European Association of Urology (EAU) generally define undetectable PSA as below 0.1 ng/mL post-prostatectomy.

Are you saying that the AUA and EAU are not the medical community? They sure seem to be exactly that. I even included the “generally” reference they used.

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@jeffmarc
Your first post: Actually, The medical community generally considers < .1 as undetectable. Some labs can go as low as < ,001 And others < .006 But that is not considering undetectable that is just the value they come up with. You stated, Medical Community not AUA and EAU. That came on your second post saying you did more research.

I do not speak or infer what "Medical Community" is or what they state. You did more research for whatever reason and you contradicted your first post. It was your second post that you said the medical information was coming from AUA and EAU.

Regarding the way I post my PSA tests. My test results are sent to me on Mayo portal. I post exactly the way the number was given to me not what you think is the right way it should be posted. I don't leave off 0 or anything else as want to make sure what I post is what was given to me and not alter it.

My Mayo Lab gave me .10 Again I asked my PCP about how low those numbers would go. And he (Mayo Jacksonville) replied (message again written in portal) that Mayo Jacksonville lab considers anything below .10 as undetectable and probably will not see. What Mayo Phoenix or Minnesota does I don't try to state information as not part of my personal experience.

I did post to one poster that was going to asked if Mayo Jacksonville if Mayo a more specific test based on the specific case of the patient. I was wondering about those with RP who don't have a prostate. I just had radiation and don't know if a more sensitive test is done for those with RP so will asked. But this will come from my medical doctors and what Mayo Jacksonville labs do.

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Profile picture for jc76 @jc76

@jeffmarc
Your first post: Actually, The medical community generally considers < .1 as undetectable. Some labs can go as low as < ,001 And others < .006 But that is not considering undetectable that is just the value they come up with. You stated, Medical Community not AUA and EAU. That came on your second post saying you did more research.

I do not speak or infer what "Medical Community" is or what they state. You did more research for whatever reason and you contradicted your first post. It was your second post that you said the medical information was coming from AUA and EAU.

Regarding the way I post my PSA tests. My test results are sent to me on Mayo portal. I post exactly the way the number was given to me not what you think is the right way it should be posted. I don't leave off 0 or anything else as want to make sure what I post is what was given to me and not alter it.

My Mayo Lab gave me .10 Again I asked my PCP about how low those numbers would go. And he (Mayo Jacksonville) replied (message again written in portal) that Mayo Jacksonville lab considers anything below .10 as undetectable and probably will not see. What Mayo Phoenix or Minnesota does I don't try to state information as not part of my personal experience.

I did post to one poster that was going to asked if Mayo Jacksonville if Mayo a more specific test based on the specific case of the patient. I was wondering about those with RP who don't have a prostate. I just had radiation and don't know if a more sensitive test is done for those with RP so will asked. But this will come from my medical doctors and what Mayo Jacksonville labs do.

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@jc76
Those two groups, AUA and EAU, are a big part of the medical community in Europe and USA. In my original comment I didn’t think I needed to quote them, but I was aware of their statements because I’d actually read that information a couple of days before I made my post. Didn’t think I needed to be so specific since i was just posting well known information. I did post that specific information later, Because I thought it would be more informative for people, and it would add some more different opinions.

Enough already.

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Profile picture for pesquallie @pesquallie

@jc76

> 0.1 means higher than 0.1. Some people posting do not seem to understand that < 0.1 is the normal way to present a PSA less than 0.1.

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@pesquallie
I normally don't use the > or < I use below. Reason is that is the way my doctors talk to and send me portal messages using clear language.

I have a terrible time with long post and brevity. I lately have attempted to use the > to at last cut down some. Only to find the < and worn off my key pad. I knew this but sadly did not pay attention and yes your post on the < and > is correct and for me should just keep to my use of words.
But I thank you for your respectful post.

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Profile picture for jeff Marchi @jeffmarc

@jc76
A .10 result is not the same as < .10. It’s interesting they add a zero after the one and you’re not getting an ultra sensitive test. I’ve never gotten anything, but one digit after the decimal point.

Did they tell you it was below .10, Not that it was .10. It’s not quite clear from what you’re writing And those results Are not the same. For the last 25 months, my test has come back as < .1. I don’t expect it to last forever, but it’s nice to get a vacation.

The same as an AI search shows that < .1 is widely recognized as undetectable By many institutions, Are you saying people shouldn’t be informed about that? I’ve seen it in documentation from one of the major prostate cancer standard groups. But it’s not OK to tell people? They are also saying effectively that the medical community generally considers < .1 to be undetectable.

It’s an educational thing not a personal point of view.

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@jeffmarc
I have replied to you in past. Make sure you read a post before you fact check others.

I posted my last PSA test came back to me in writing on my portal. Mayo Jacksonville uses patient portals to send test results. My portal test listed my test results as PSA .10 They also sent you a chart to show the over time changes.

Plain and simple I posted what Mayo lab sent to me in writing. Questioning others? You can post what you get or want to use to post but I will post exactly the way Mayo Jacksonville sends their lab results to patients. I don't know what Phoenix and Minnesota does because they don't treat me nor use their labs so I don't tell other posters what other labs do or not do, nor any other lab and what the use for undetectable or how their lab results are posted as that is not my personal experience.

Again you seem to be fact checking with "not quite clear from your writing." And did they give you this or that. I think it is perfectly clear I posted exactly what my lab test posted .10

I then posted I asked my Mayo Jacksonville PCP about how low the PSA numbers could go. He replied (via portal) that would probably not see an lower numbers as Mayo Jacksonville lab uses anything under .10 as undetectable. I posted that exact language as it to came to me via portal.

Regarding your comment: A.I. shows: < 1 is widely recognized as undetectable by (By your typing) many institutions." "Are you saying people should not be informed about that."

You posted information on your first post: "the medical community says." You did not use any reference you were citing the specific medical institutions you did in second post. Those medical intuitions came after posting "I did more research." Then you came back saying from your research you found no standardized number.

I think the MCC PC forum should try to get their medical information provided by they medical doctors, and specific labs they use. Many posters like me state labs are different and trying to lump test results and how they are done will differ from lab to lab. If they want more information research it. I have used in my post a reference to medical intuitions but I never post "the medical community" says this because I don't speak for medical community.

I have learned a lot from web sites send out to reference. But it was to go to those sites and read the information yourself. One of the mentors gave a web site for Kegel exercises was excellent and helped me immensely.

I have interacted with you in the past fact checking me only to come back and then you would say made mistake. Or statements like my writing not clear and you went back and read it you would come back you did not read it correctly.

I also posted that I am going to asked my Mayo PC (to another poster) if Mayo uses another more sensitive test for those that it is necessary (like those that have had RP).

I post what Mayo Jacksonville gives me and from my direct personal experience with them and my personal journey with PC. I do not refer to others institutions or other posters PC experience.

REPLY
Profile picture for jeff Marchi @jeffmarc

@jc76
Those two groups, AUA and EAU, are a big part of the medical community in Europe and USA. In my original comment I didn’t think I needed to quote them, but I was aware of their statements because I’d actually read that information a couple of days before I made my post. Didn’t think I needed to be so specific since i was just posting well known information. I did post that specific information later, Because I thought it would be more informative for people, and it would add some more different opinions.

Enough already.

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@jeffmarc
You are the one with fact checking and questioning others post. So don't question others if you don't want them to respond. "enough already?"

You are not a medical professional, a medical expert on PC and should not infer you are. In my opinion you need to be specific when you are citing information and not inferring that you are speaking for medical community.

I am not alone JM in your postings on MCC. You have had a long journey with PC. I understand your research wanting to know more about your PC. But you say I did not think I needed to clarify this or that but then you ask others to clarify their post but you don't think we should question or ask you the same.

I will say again, I am not a medical professional, and am not a PC expert and do not try to infer I am. I trust my medical doctors and the information given directly to me. If I doubt something I research it or get second opinions from PC medical professionals.

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Profile picture for jc76 @jc76

@jeffmarc
I have replied to you in past. Make sure you read a post before you fact check others.

I posted my last PSA test came back to me in writing on my portal. Mayo Jacksonville uses patient portals to send test results. My portal test listed my test results as PSA .10 They also sent you a chart to show the over time changes.

Plain and simple I posted what Mayo lab sent to me in writing. Questioning others? You can post what you get or want to use to post but I will post exactly the way Mayo Jacksonville sends their lab results to patients. I don't know what Phoenix and Minnesota does because they don't treat me nor use their labs so I don't tell other posters what other labs do or not do, nor any other lab and what the use for undetectable or how their lab results are posted as that is not my personal experience.

Again you seem to be fact checking with "not quite clear from your writing." And did they give you this or that. I think it is perfectly clear I posted exactly what my lab test posted .10

I then posted I asked my Mayo Jacksonville PCP about how low the PSA numbers could go. He replied (via portal) that would probably not see an lower numbers as Mayo Jacksonville lab uses anything under .10 as undetectable. I posted that exact language as it to came to me via portal.

Regarding your comment: A.I. shows: < 1 is widely recognized as undetectable by (By your typing) many institutions." "Are you saying people should not be informed about that."

You posted information on your first post: "the medical community says." You did not use any reference you were citing the specific medical institutions you did in second post. Those medical intuitions came after posting "I did more research." Then you came back saying from your research you found no standardized number.

I think the MCC PC forum should try to get their medical information provided by they medical doctors, and specific labs they use. Many posters like me state labs are different and trying to lump test results and how they are done will differ from lab to lab. If they want more information research it. I have used in my post a reference to medical intuitions but I never post "the medical community" says this because I don't speak for medical community.

I have learned a lot from web sites send out to reference. But it was to go to those sites and read the information yourself. One of the mentors gave a web site for Kegel exercises was excellent and helped me immensely.

I have interacted with you in the past fact checking me only to come back and then you would say made mistake. Or statements like my writing not clear and you went back and read it you would come back you did not read it correctly.

I also posted that I am going to asked my Mayo PC (to another poster) if Mayo uses another more sensitive test for those that it is necessary (like those that have had RP).

I post what Mayo Jacksonville gives me and from my direct personal experience with them and my personal journey with PC. I do not refer to others institutions or other posters PC experience.

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@jc76
You guys need to stop being petty. You're acting like a bunch of teenage girls!

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Profile picture for jeff Marchi @jeffmarc

@jc76
Those two groups, AUA and EAU, are a big part of the medical community in Europe and USA. In my original comment I didn’t think I needed to quote them, but I was aware of their statements because I’d actually read that information a couple of days before I made my post. Didn’t think I needed to be so specific since i was just posting well known information. I did post that specific information later, Because I thought it would be more informative for people, and it would add some more different opinions.

Enough already.

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@jeffmarc
You guys need to stop being petty. You're acting like a bunch of teenage girls!

REPLY

@jc76 and @jeffmarc,
Reading your posts, you agree more than you disagree.

"An undetectable PSA level is generally considered below 0.1 ng/mL, but with newer, ultra-sensitive tests, it can be defined as < 0.06 ng/mL, < 0.05 ng/mL, or even < 0.01 ng/mL, depending on the lab and test sensitivity, with lower values indicating better outcomes after prostate treatment." Read more: https://www.mayocliniclabs.com/api/sitecore/TestCatalog/DownloadTestCatalog

Yes, Mayo Clinic Connect is a place to share our personal experiences. Community members share experiences, ask questions, find answers, give and get support and exchange vital information.

As we grow familiar with the condition we live with, we gather information to share with others. Thus, members can use phrases like "the medical community..." or "according to Mayo Clinic..." or "as I learned from this Prostate Cancer Research Institute (PCRI) webinar..." When citing information you've gathered, please try to post references.

It's true that members should not give medical advice, however citing references or what you have learned from you health care team is permitted.

Should you have any questions, send me a PM or an email using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

REPLY
Profile picture for Colleen Young, Connect Director @colleenyoung

@jc76 and @jeffmarc,
Reading your posts, you agree more than you disagree.

"An undetectable PSA level is generally considered below 0.1 ng/mL, but with newer, ultra-sensitive tests, it can be defined as < 0.06 ng/mL, < 0.05 ng/mL, or even < 0.01 ng/mL, depending on the lab and test sensitivity, with lower values indicating better outcomes after prostate treatment." Read more: https://www.mayocliniclabs.com/api/sitecore/TestCatalog/DownloadTestCatalog

Yes, Mayo Clinic Connect is a place to share our personal experiences. Community members share experiences, ask questions, find answers, give and get support and exchange vital information.

As we grow familiar with the condition we live with, we gather information to share with others. Thus, members can use phrases like "the medical community..." or "according to Mayo Clinic..." or "as I learned from this Prostate Cancer Research Institute (PCRI) webinar..." When citing information you've gathered, please try to post references.

It's true that members should not give medical advice, however citing references or what you have learned from you health care team is permitted.

Should you have any questions, send me a PM or an email using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

Jump to this post

@colleenyoung
Thank you.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@jc76 and @jeffmarc,
Reading your posts, you agree more than you disagree.

"An undetectable PSA level is generally considered below 0.1 ng/mL, but with newer, ultra-sensitive tests, it can be defined as < 0.06 ng/mL, < 0.05 ng/mL, or even < 0.01 ng/mL, depending on the lab and test sensitivity, with lower values indicating better outcomes after prostate treatment." Read more: https://www.mayocliniclabs.com/api/sitecore/TestCatalog/DownloadTestCatalog

Yes, Mayo Clinic Connect is a place to share our personal experiences. Community members share experiences, ask questions, find answers, give and get support and exchange vital information.

As we grow familiar with the condition we live with, we gather information to share with others. Thus, members can use phrases like "the medical community..." or "according to Mayo Clinic..." or "as I learned from this Prostate Cancer Research Institute (PCRI) webinar..." When citing information you've gathered, please try to post references.

It's true that members should not give medical advice, however citing references or what you have learned from you health care team is permitted.

Should you have any questions, send me a PM or an email using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

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@colleenyoung
Your posts clarifies that using a term the Medical Community (does not identify the medical institutions) and that many medical institutions are now using new ultra-sensitive test to determine what it undetectable.

Thank you for the additional information. I was not aware of the ultra sensitive test far below using < .1 It is why I posted I would talk to my PCP Mayo about was Mayo Jacksonville using a more sensitive type PSA test on specific patients or now available.

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