1. < Prostate Cancer

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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jc76 | @jc76 | Oct 9, 2023
In reply to @hammer101 "I would recommend going to a center of excellence (such as Mayo-Rochester). Rural doctors just don't..." + (show)
@hammer101

I would recommend going to a center of excellence (such as Mayo-Rochester). Rural doctors just don't have the experience that is needed. Before I retired, I went to my local doctor (Davenport, IA) every year to have a physical. One of the tests they performed was PSA level. I was busy traveling for my job, so believed what they told me (everything looks good with your tests, good to go). After retiring, I wanted to more closely manage my health. Went to a cardiovascular team to change my diet so I could get off the statin I had been taking for a decade. The nurse practitioner was a friend of our, so she reviewed my entire medical file. At the end of my first meeting, she asked me if I was addressing my prostate problem. I asked, what prostate problem. She let me know that my PSA had been rising for over 6 years, doubling three time, with an increasing velocity. At that point, I went to Mayo-Rochester, was diagnosed with PC (Gleason 7-4/3). Being 56, I went with a radical prostatectomy and doing well now (10 months later).

Bottom line, these mid-sized practice doctors cannot be trusted. You must do your own research, manage your own health, and get to a center of excellence when there is a problem.

Best of luck,

Jim

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Wow hammer101, That is terrible that your provider was not addressing or concerned with the rising PSA.

My primary care doctor at Mayo did not like my rising PSA over the years even though was still in normal range. We thought it might me my long distant bike riding so we laid of the bike riding for a week prior to a PSA test and still rose. He said was not going to let a rising PSA not be addressed. He changed seeing him and testing to every 3 months and when still was rising (even though not that much) and don't like the rising rates consistently over the last couple of years.

He referred me to urologist and said the urologist will order an MRI. Then my journey began but my primary care doctor kept seeming and still seeing me every 3 months even after treatment ended to provide additional feedback and watch with me my results and recovery. Great doctor and not only sees me but is always available to me via Mayo portal.

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1 reply
hammer101 | @hammer101 | Oct 10, 2023
In reply to @areallyrawdeal "Thanks Jim: What really got me is that no doctor in the two years I was..." + (show)
@areallyrawdeal

Thanks Jim: What really got me is that no doctor in the two years I was in trouble knew that lower back pain in an older man is a red flag for prostate cancer. None ever brought up my prostate? I diagnosed myself. It just infuriates me that I have been put in this situation because of doctors who failed at their job in every way. I’ve come to terms with this now so I’m okay. Thanks again. All the best to you.

Jump to this post

I agree, it is very disturbing how many incompetent doctors and hospital organizations there are in practice. At this point, like you did, we must all become educated about our symptoms and help drive our doctors to the root cause. After a person knows what they have, it is vital to get to a center of excellence for that illness. For me, with prostate cancer, that was Mayo-Rochester. I cannot say enough positive about the experience I had at Mayo-Rochester. Doctors and staff were incredible and caring.

Jim

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hammer101 | @hammer101 | Oct 10, 2023
In reply to @jc76 "Wow hammer101, That is terrible that your provider was not addressing or concerned with the rising..." + (show)
@jc76

Wow hammer101, That is terrible that your provider was not addressing or concerned with the rising PSA.

My primary care doctor at Mayo did not like my rising PSA over the years even though was still in normal range. We thought it might me my long distant bike riding so we laid of the bike riding for a week prior to a PSA test and still rose. He said was not going to let a rising PSA not be addressed. He changed seeing him and testing to every 3 months and when still was rising (even though not that much) and don't like the rising rates consistently over the last couple of years.

He referred me to urologist and said the urologist will order an MRI. Then my journey began but my primary care doctor kept seeming and still seeing me every 3 months even after treatment ended to provide additional feedback and watch with me my results and recovery. Great doctor and not only sees me but is always available to me via Mayo portal.

Jump to this post

JC76, sorry for the initial reply. I had two replies and accidentally replied to yours with an incorrect response 🙂 ...
It is awesome that your primary care physician is at Mayo. Amazing what a difference it makes to have a competent doctor and organization. Your doctor knows that PSA level does not guarantee you have or don't have cancer. It is the doubling time and velocity that is most important.
For myself and my wife, we are looking into doing a yearly physical at Mayo-Rochester to take the incompetent local doctors (Quad Cities, Iowa side) out of the loop. We would still use the local doctors for colds and non-life threatening issues, but not for anything serious.

Best of luck and so very glad all is going well for you!!

Jim

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jc76 | @jc76 | Oct 10, 2023

hammer101, Not sure I read your initial reply.

I think going to a outstanding medical facility can make all the difference in the world. I know a lot of medical facilities like Cleveland Clinic, Mayo, etc. can do and will do tests, physicals, procedures and then work with your local medical doctors.

I had a doctor down in Vero Beach (he was trained at Mayo) working for IRMH medical and told me. It is okay to have minor things done here but I recommend you go to major medical facilities for anything important. I remembered that and got a second opinion way back in 2006 at Mayo Jacksonville and stayed with them since then.

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