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 !!!

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

waynen | @waynen | Jul 19, 2023

In reply to @fuzzy123 "It’s how you ask the question ✌️ Ask if PSA tests are recommended ???" + (show)

I was diagnosed with high risk PC at 73. My General Practioner checked my PSA every year. When my PSA was 2.2. At 72 it was 2.8 and at 73 it was 3.8.
My doctor didn't like the trend and sent me to a specialist who found 4+4 Gleason. My Mayo radiation oncologist told me that the PSA is caused by the prostrate and prostrate cancer. If the PSA starts rising, it's the time to check it out if the PSA starts rising. By the way, my brother was over 75 and his doctor wanted to stop checking PSA. Since I had it, he asked to have PSA continued and last year was treated for PC. Keep checking it.
I listened to a panel of Urologists who talked about getting patients who stopped getting PSAs and they were finding patients with much more severe cases of cancer. Catching it early makes it much easier to treat.

cstrutt52 | @cstrutt52 | Jul 19, 2023

You said that you had a boatload of questions, but I don't see a question. Please do remember that this is not Facebook. Ranting and yelling at others is not the standard here. Ask a question of other cancer patients and they will respond. But they are patients not doctors. We can only talk about our experiences.

booterbaugh | @booterbaugh | Jul 19, 2023

In reply to @fuzzy123 "Yes, All Urologists will order PSA testing because they believe it should be a mandatory test,..." + (show)

True true.. doctors don't even know about prostate cancer..too many options and opinions.. I'm just going to die with it.

lcashell | @lcashell | Jul 19, 2023

In reply to @lcashell "My oncologist insists that I have a PSA test every month. After my initial slash/poison/burn (surgery,..." + (show)

I just noticed a "Freudian" slip in my response. You are most definitely "cursed" to have Stage 4 cancer. You are never "cured". Hah!

pianoman | @philipbrachko | Jul 20, 2023

Been doing this for a year. I would start with AI. Download Microsoft Edge. It's free. Their search engine , Bing will take you to their Open AI, you can ask any question. On the left side of the page it will refer you to studies and websites RE: your question, the right side of the page, you can start a dialogue with AI.

gila | @gila | Jul 20, 2023

Dear friend, I’m so sorry you aren’t getting your questions answered. It is really hard to even know the questions to ask. There is so much technical info, drugs, acronyms, options and opinions Since my husband was diagnosed and had surgery in June, I daily read volumes of things trying to educate us before we go back to Mayo in September. Sometimes my brain is just too full to absorb it all. It gets overwhelming.
Please know that that there are men who live 20 or more years despite experts and statistics. My great uncle was one of them. He died of a heart attack at 83, not the cancer.
We have to feel our strong feelings, grieve the loss of what we thought life would be, accept, live in the uncertainty and try to find hope. Sometimes a good therapist is invaluable to the process.
Much love and prayers for us all on this journey.

ajpernsteiner | @ajpernsteiner | Jul 24, 2023

I had some issues withe the VA and psa testing. However, anyone that has a Quest Lab can order his own PSA test for $59 (rate here in Vegas) Any man with PC in his family should establish a base psa #, regardless of age and what a primary dr tells him. June of 2022 I had to fight for my rights, and finally got the biopsy and was gleason 10. 45 sessions of radiation and will be on Orgovyx for a year this August 31st. So far doing very well.

groundhogy | @groundhogy | Jul 25, 2023

In reply to @cstrutt52 "You said that you had a boatload of questions, but I don't see a question. Please..." + (show)

Thats a little heartless castrut. The guy just showed up.

groundhogy | @groundhogy | Jul 25, 2023

fuzzy123
Im very curious as to the secret that doctor told you...

cstrutt52 | @cstrutt52 | Jul 25, 2023

In reply to @groundhogy "Thats a little heartless castrut. The guy just showed up." + (show)

Not meant to be heartless, but he does need to calm down and learn to avoid conspiracy rabbit holes. He claims to have lots of questions but asks none. He claims to know more than the Mayo doctors but does not say what he knows. Complains about a "gang of doctors" who make up the PSA rules to harm us all and also calls for mandatory PSA testing. And then he never returns. We all live under some "percentage" rule ("you have an 80% chance of living another five years" etc.)