I was diagnosed in May, and I realized last night that I am worn out. People say prostate cancer is the "good one". They have no idea. Things move so slowly. It seems from the time you get the high PSA score something is hanging over your head. A month for MRI, hoping for good results. No. Another month for biopsy, worrying about results. Nope. Waiting a month for PSMA and worrying that it has spread. Finally good news there. Making appointments with different doctors who give you different answers, some contradicting the last doctor you have seen, some contradicting the information from the countless hours you have spent researching treatment options. Having a doctor tell tyou that Decipher doesn't matter because you are not a candidate for AS anyway. (4+3) Having the next say it should be done. Having a doctor tell you that you need a genetic test. The next saying it doesn't matter, it has no impact on treatment.
For example, I got a second opinion from a urological oncologist. He said I was a great candidate for focal therapy such as HIFU or cyro. But of course he specializes in those treatments. He also told me that if BRCA was present I wasn't a candidate at all and have prostate removed. So now wait 6 weeks for germline testing. When I told him that I have seen studies of poor outcomes with HIFU and cyro, he told me those are older studies and that the next big study would show vast improvements.
Your head gets filled with so much information that it starts to wear you out after awhile.
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Chasbearcat999
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Have you find out more about Cribriform or asked your MO about any additional treatment that is needed or recommended? maybe a short ADT, 4-6 months? I had 3+4 (40% gr4) in biopsy taken in May (cribriform is not mentioned) that is upgraded to 4+3 (70% gr4 with Cribriform) in histology report post RALP in June, 1 month later. My research so far concludes adverse prognosis and outcome for existing of Cribriform morphology. So please ask your MO and J.Hopkins if any additional treatment is recommended and give me a feedback. Here is my history, so far healthunlocked.com/user/FMOH_N
Welcome to modern medicine. Tall Allen is certainly right, but that takes an enormous amount of time (and talent), and unless you are a scientist, I think it is difficult to "follow the evidence".
For my part I try to find the best people I can get access to, listen, process the inflow of info as best I can, and go with the counsel I get from the person I Intuitively trust the most most.
Like you, I wish there was consensus, but often times there is not.
Sigh...the "best" treatment option is not always obvious. Focal can work.....but studies so far indicate less successful than Rp or RT...as you mentioned !!!
The good news about PCa is there are a lot of treatments. The bad news is there a lot of treatments. Good luck on the journey you undertake when you are in the club no one wants to join. We have all been through it. Just take your time and do your research as best you can. When you make a decision never doubt yourself. Best wishes.
The amazing part is that they present you with options and ask you to decide. I remember being on a zoom three years ago with a radiologist and a surgeon together, and I asked, “so now the guy in the room who knows the least is going to decide what we do?”
Practically speaking, I do recommend you find a therapist. Talking about this stuff once or twice a week helps you clear your head and find focus. Believe there is a hospital in California that now actually assigns you a therapist when you are diagnosed as part of your care plan. As it should be.
I can only laugh. My Urologist retired, my Oncologist moved a thousand miles away and my Radiation Oncologist, who was a department head, reportedly got relieved of his duties all within the last 8 months.....and it was confusing even before all that happened. I promise I feel your pain. Hang tough brother, we'll make it.
I agree with your comments and the confusing list upon list of abbreviations & medicine descriptions!! I was put in a position (UK) of effectively being interviewed by three consultants each one with their own specialism ! And I had to make the choice! I went for Brachytherapy. That was in 2011 and end of last year with the PSa rising I was faced with further "negotiations!" This time it was a focussed radiotherapy beam onto a tumour on an adjacent lymph node! Waiting now for the results of my first blood test!
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