New to Prostate Cancer with a boatload of questions, but who to ask?

Posted by fuzzy123 @fuzzy123, Jul 17, 2023

So many questions to ask !!!
Diagnosed July 2022. PSA was 37 and was told my Gleason score was between 6 and 9 after biopsies and the cancer went to a single lymph node !!! Went thru 44 rounds of external beam radiation and was put on Abiraterone and Prednisone and now my PSA is almost undetectable !! Was never given a Stage to my cancer but rather a life expectancy ( 50% chance to live 5 years ) !! My cancer Doctor/Doctors have a portal to ask questions but I was told to Make Appointments to talk !!! Meaning they want PAID to answer A question or many questions !!! I was never given a PSA test previous to my diagnosis and I found out it’s Not Recommended to do so ??? And I know a few other things about this Non Testing that some may not know including even Mayo Clinic Doctors !!! Though they should know and just accept the reasons why there isn’t Mandatory PSA Testing !!! One of my Doctors who Attends and Speaks at many Cancer Centers told me a few things that really, really upset me about this Gang of Doctor’s that MAKE THE RULES regarding PSA testing and ultimately cost me my life !!! Yes I know THINGS !!!

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@fuzzy123
My urologist orders regular PSA tests as does my primary and have for many years.
Take care,
Jake

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Yes, All Urologists will order PSA testing because they believe it should be a mandatory test, As far as PCP providers that’s a whole different story !!! It’s an individual choice , and many, many do not ever order a PSA test because it is not recommended to do so !! But like I said before I guarantee ALL Drs in USA will get a PSA test done to themselves regardless what they will do for their patients. I mean 1 out of every 9 men will get prostate cancer !! ( It’s not rocket science ) just common sense to do so !!!

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First of all, calm down. You had prostate cancer and you were cured. Now for the rest of your life: Get your family doctor or any doctor you might regularly see order an annual PSA test. I had a reoccurring cancer five years after RP. I saw a Radiation Oncologist and he did 39 treatments of radiation. Now every six months my Radiation Oncologist has me do a PSA test. It seems to me that your radiation oncologist should have done the same. Bottom line is that we all are responsible for our own health so take the step above and get an annual PSA TEST.

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My oncologist insists that I have a PSA test every month. After my initial slash/poison/burn (surgery, chemo, radiation) treatment regiment my PSA was non-detectable so we went to a once every 3 month test schedule. But after 5 years the cancer returned. So we are back to once a month.

Nobody ever told me what my “stage” was either, but it is in my online medical records. Stage 4 is defined (I believe) as cancer that has spread to other organs such as lymph nodes.

And, I am afraid I have to disagree with the above comment about being cured. You are never cursed from Stage 4 cancer. You simply try to keep in check.

Since it has reared its ugly head again, We tried a (rare) second dose of radiation treatments. If that doesn’t work, we are going back to a systemic treatment.

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@daveymc

First of all, calm down. You had prostate cancer and you were cured. Now for the rest of your life: Get your family doctor or any doctor you might regularly see order an annual PSA test. I had a reoccurring cancer five years after RP. I saw a Radiation Oncologist and he did 39 treatments of radiation. Now every six months my Radiation Oncologist has me do a PSA test. It seems to me that your radiation oncologist should have done the same. Bottom line is that we all are responsible for our own health so take the step above and get an annual PSA TEST.

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Cured ??? I never said I was cured !!! I said as of right now my PSA is undetectable !! I was told I had 50% chance of making to 5 years !!! I’m going to DIE of this crap !!! And I never knew what a PSA TEST was or what it was for !!! I am very responsible for my own health but if I don’t know anything about something how the hell am I supposed take care of it !!! Isn’t that what my PCP is getting Paid to do ??? Take care of my health ??? And my PCP doesn’t give a PSA test to any of his male patients !! I asked him and he said NO !!

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Your cured if you have undetectable PSA and if your PCP won't prescribe a PSA for you, get another PCP. And whoever gave you that statistic is out of date. Something is strange here, if your PCP doesn't prescribe PSA'S how did you find out you had prostate cancer? Best of luck guy you will die from worry faster that from prostate cancer.

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@daveymc

Your cured if you have undetectable PSA and if your PCP won't prescribe a PSA for you, get another PCP. And whoever gave you that statistic is out of date. Something is strange here, if your PCP doesn't prescribe PSA'S how did you find out you had prostate cancer? Best of luck guy you will die from worry faster that from prostate cancer.

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It’s called REMISSION, not cured !!
So then according to you I should Stop taking the Zytiga and not get anymore LUPRON injections 🙈 And after 9 months of night sweats ( 8 PCP visits ) he finally checked that little PSA box on the bloodwork paper !! That’s how I found out !!
Yes, something is strange here (YOU) !! My PCP does not test PSA because it is not recommended to do so !! GOOGLE IT and it will tell you the exact same thing my PCP told me !! It is Not Recommended to give patients PSA blood work tests !! So he and many PCPs do not give PSA tests !!

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@fuzzy123

It’s called REMISSION, not cured !!
So then according to you I should Stop taking the Zytiga and not get anymore LUPRON injections 🙈 And after 9 months of night sweats ( 8 PCP visits ) he finally checked that little PSA box on the bloodwork paper !! That’s how I found out !!
Yes, something is strange here (YOU) !! My PCP does not test PSA because it is not recommended to do so !! GOOGLE IT and it will tell you the exact same thing my PCP told me !! It is Not Recommended to give patients PSA blood work tests !! So he and many PCPs do not give PSA tests !!

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I think you need to change your PCP. Anytime you Google for PSA it says something like this, "While the general guidelines recommend starting at age 55, you may need PSA screening between the ages of 40 and 54 if you: Have at least one first-degree relative (such as your father or brother) who has had prostate cancer.

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It’s how you ask the question ✌️ Ask if PSA tests are recommended ???

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fuzzy123: I think we all go through some type of grieving process when we find out about cancer and the journey can be tough in many ways. Get as many opinions from Dr's as you can and then make your comparison. Although highly trained and experienced and generally worth listening to, that does not mean they always make the best choices as they are also humans with flaws. All any of us can do is to listen to different sources and opinions and pick through what may work best for each of us. Even the awkward or less than professional opinions, help us avoid concluding something that could make things worse. We can only make the best collaborative decision we can make with imperfect information as we are all different. Good luck with the scary and frustrating journey but just take one step at a time. You will get to a solution that gives you some level of satisfaction.

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