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ADT, maybe not? Anyone opted out of ADT?
Prostate Cancer | Last Active: 17 minutes ago | Replies (83)Comment receiving replies
@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
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@jc76 We only stopped the Zytiga after 3yrs. He's been on hormone therapy, leuprolide, for almost 4yrs and we are just now stopping that, but with strict PSA monitoring.
He has only had that 1 biopsy by Urology Austin in late 2018 that showed Gleason 3+4, 2 out of 12 cores with < 10%. I've never heard the term Decipher before I started reading MCC. David was on Active Surveillance for 2yrs. He was put on hormone therapy in early 2021 because of PSA of 72 & 1 CT that "suggested" lymph node mets. This was the only urologist in Alamogordo, NM. We moved back to & saw Austin Cancer Center Oncologist who added Zytiga, even though their CT showed no metasis a little over a month after 1 Lupron shot! Then when that Dr moved away we went to Texas Oncology. Then we decided just to move back to NM & at least be happy in the mtns! Every Dr only wanted to take up where that 1st Urologist in NM left off!
The next oncology appt is Nov 10 @ a Christus Cancer Ctr to agree to monitor the PSA after stopping ADT. It went down from 0.06 to 0.05. Yay! And yes we did find a great Internist for both of us, who let's me handle David's med mgmt, ha! He is not a proactive patient but very compliant. You probably know how stressful being "proactive" can be & I let all these Drs intimidate me for too long. Thanks so much for all the support from y'all @ MCC!!!