Connect
Comment receiving replies
@jc76 I wish my husband had your experience back in 2021 when his PSA spiked. He had his only biopsy in 2019 that showed low risk & MRI that showed no metastasis. The urologist said the CT showed suggested mets to lymph nodes so he started ADT immediately & put us in shock w/death threats! Then the oncologist put him on Zytiga even after the CT showed no mets 1-1/2 mo after 1 Lupron shot. So then, each urologist and oncologist we went to over the next 4yrs just carried on with the Lupron every 3mo and Zytiga+Prednisone every day. I asked to stop Zytiga after 3yrs and his PSA every 3mo stayed undetectable! We have been offered no further testing in all this time. Except that I asked to have the genetic testing & it came back low risk, but they never offered the genomic testing (in case treatment could be improved for his prostate cancer if there is any left!) We are in the process of stopping treatment & going back to Active Surveillance. Sure need prayers. Thanks!
Replies to "@jc76 I wish my husband had your experience back in 2021 when his PSA spiked. He..."
@jonesfit65
You have my full prayers. I have had excellent medical care and can only imagine how you and your husband are feeling.
It appears you have been going to different urologist and oncologist but still not comfortable or trusting your are getting the best care and tests. Have you explored getting a second opinion from a major medical instutition? Usually you do not need to have a in face appointment as your medical records can be sent there.
You mentioned having the genetic test and came back low risk. Was that the Decipher? But the Decipher test would have been on biopsies taken 6 years ago and not reflective of today.
I must advise I do not have personal experience with hormone therapy. I can only reflex on what I have been briefed on by my medical doctors, what I have in research, and what I have read on MCC. Hormone treatments are usually going to dramatically reduce PSA.
But then I think I read correctly after you stopped hormone therapy 2.5 months later your PSA was undectectable. If I read right his tests showed metasis? Is that correct? Back in 2019 do you remember his Gleason Score? It is the basis of treatment options and other testing needed to clarify or add to that diagnosis.
Sounds like you and your husband are having really terrible time with his PC diagnosis and treatment options from his doctors. Mental health is just as important as our physical health as both will have dramatic affects on each other.
Do you have a primary doctor you like and trust? Discuss with him/her about second opinions from a major medical institutions and be honest about the standard of care you feel you are getting now from his urologist/oncologist
Connect
@jonesfit65
What you could do is stop all the drugs and see if his PSA starts rising. If it does get a PSMA PET scan and that will find whether or not there are Mets in his body. This is something you have to work with his doctor to get approval, But it does make sense so you could be proactive about it and say this is what you want to do. You want to get the PSMA pet scan when the PSA hits around .6 or .7, Any lower and it may not see Anything.
This will show whether or not there really is a problem.
When he stops prednisone, he must taper it off over a long period of time or he will get a tremendous amount of fatigue in the afternoon. It can take months to taper it enough, so the fatigue doesn’t occur. Talk to your doctor about this, It is a major problem when Someone drops prednisone.
Back in 2021 the PSMAPET scan was not readily available, Now it is.