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DiscussionNew to the brotherhood, is my event timeline reasonable?
Prostate Cancer | Last Active: Apr 7 11:42am | Replies (18)Comment receiving replies
@logan9
I wanted to provide an update to my journey for anybody facing the decision of moving their care to a center of excellence.
After my surgery but before my initial 3-month follow-up, after receiving good advice from this forum I sent my Urologist surgeon a message stating:
Given my aggressive features, I wanted to use this time interval to evaluate where/who he would refer me for radiation treatment and begin to move towards a team approach.
More detailed information regarding my cribriform pattern, was it large/small?
I requested a Decipher test to be performed on my prostate tissue.
The responses I got over multiple exchanges was less then satisfying:
I never did get an answer to my cribriform pattern size, only a definition which I already knew.
He eventually did relent and order the Decipher test, but it required extended debate.
He would not tell me where/who I would be referred to until face to face with him at my initial 3-month follow-up. His written response to my query was, "You are likely to require a multidisciplinary approach long-term. However, in the short-term there is no value in a radiation or medical oncology referral at this time".
I did not require a referral, so after some research I setup my own appointment with a GU Oncologist at Duke Cancer Center appx two months post-surgery. Prior to this 2nd opinion meeting, I was requested to complete PSA & Testosterone testing with Duke CC, and all my prostate related information including biopsy & surgery slides/results were reviewed prior to and covered during our appointment, he answered all our questions, encouraged me to participate in the Promise program for genetic testing. We came away feeling very informed, and this oncologist was willing to work with our Urologist if that was what we wanted.
At our 3-month follow-up with our urologist, he could see on My Chart that I had been seen at Duke CC but he could see no details. He asked who I had seen, I told him and he looked him up right then. I remarked that he would not reveal the same information to me previously so I asked him again where/who he would refer be to, and he finally told me which I wrote down and reviewed later. We discussed radiation/hormone treatment briefly, and he repeated that 0.2 would be the trigger point for such treatment somewhere 1-2 years in the future, and he said see you in three months. That was the last time I've seen him. I couple weeks later I sent him a nice message thanking him, but that I was transitioning my care to Duke CC, his PA responded nicely but never heard from him.
I am positive 110% that we have made the correct decision for my case, especially given the events that followed and that my 1-2 years of relief have become mere months.
Here are my data points:
PSA - 10/2/2025 = 0.02 11/5/2025 = 0.04 1/30/2026 = 0.09 3/17/2026 = 0.17
Testosterone - 10/2/2025 = 251 1/30/2026 = 232
Decipher Score - .85 (high risk)
Promise Result - Negative
The 11/5/2025 was from the urologist office, while everything else was from Duke CC, there was not much concern over the different values of the first two results due to lab variability.
After the 0.09 PSA value, we were offered an appointment with radiation oncology or we wait until the next 3-month appointment. We took advantage of meeting asap to get established and discuss my situation, which included a starting radiation/ ADT prior to 0.2 if rise continued. It was the radiation oncologist that recommended the March PSA test at the 2-month mark, which we agreed with and clearly we have rise & velocity.
Things have since moved swiftly, we have met with both oncologists since 3/17, have agreed with radiation to prostate bed and lymph nodes pelvic region. Almost finished my second week of Bicalutamide with two more weeks to go, also have Lupron 6-month shot coming this next Monday. Also, next Monday with be full blood workup with another scheduled for end of April.
Radiation will be Photon IMRT, 20 sessions, 52.5-55 Gys. I'll be getting mapped out in another week.
We had good discussions about radiation and ADT and came to an agreement on this format.
In summary, I really liked my urologist, very straightforward, we believe he did a fine surgery, but he was clearly attempting to control the narrative to his way of thinking. The entire process from disease discovery thru ultimately surgery had us reeling and unable to find solid footing. Over time with alot of learning inside/outside this forum, and solid advice from this forum, we feel like we are now able to participate with some level of confidence in discussions about my condition/treatment options.
Zero regrets transitioning to a COE, I hope my urologist experience is helpful to others in their decision making.
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@logan9
I am so glad to hear that that you found great cancer center and a doctor who is proactive and who knows what to do - what a relief it must be for you to finally feel listened to and being taken seriously. It is enough anguish to deal with imminent BCR and to deal with ambiguous answers on top of it must have been a nightmare. : ((
My husband had RP in August and his uPSA is creeping up now so I completely understand you.
Would you be so kind to tell me what length of ADT your team recommended ?
Thanks in advance .