It sounds to me like you have had good treatment. My treatment was at Mayo Rochester. DECIPHER is a relatively new treatment and does not appear to be routinely used by Mayo. I haven't researched the test since my understanding is that it is used primarily to diagnose less advanced cases which is very important, particularly with younger patients. Thus the high proportion of children you have observed.
I have read that it is important in avoiding over-treatment in marginal cases where the decision is between treatment and observation. The combination of 3D MRI, high-quality biopsy interpretation and, in my case, PSApet scanning is a very good indicator of existential metastasis rather than the probability of developing metastatic PC down the road.
Your case, where you must avoid full body radiation would make you an exception and perhaps a better candidate for DECIPHER. Intermediate stage PC diagnosis is particularly difficult to diagnose and the trend is toward breaking it down into more refined sub-categories. But there is no general agreement on how to do that. I'm sure genomic testing of many kinds will be of greater use in the future as more scientific data becomes available.
I took two weeks off and travelled to Rochester over the Christmas holidays in order to shorten the treatment schedule to two weeks. Pre-treatment my PSA was 13.85. I had PSA tests at three weeks post-treatment (6.7), and another six months after that (2.7). I've had no post-treatment care other than observation at six-month intervals. I had two tumours, one on each side of the prostate. Now we are watching the downward trend in PSA, alert for any changes in trend. It will reach its nadir at some point where, one hopes, it will remain until it no longer matters.
When you had the follow up PSA testing was that done at Rochester or locally?
DECIPHER is a genetic test of your biopsie cancer. It determines if high, intermediate or low risk of metastasis. I don't think it is used much as is very expensive. Mayo does not do the test. They take the biopsie cells and are shipped or somehow give the lab that does the DECIPHER.
In addition to Mayo giving me the results the DECIPHER testing institute did state if insurance did not cover the test they had speical pricing based on your income. Mine covered it.
What I had was Proton Pencil Beam. It is a narrow beam technology that limits secondary radiation as well as stopping at prostrate and not continuing through body like Photon does.
It appears you had a high dose treatment and a lot less treatments than I. I had some and still have some side effects but no medication or treatment needed for them. I have not had a post PSA test yet. They do it at post 3 months. Then every 3 months for 1st year, then every six months for second year, and not sure what after that.
Again thanks for you information.