I have had PSA tests annually for 10 years and in Oct 2023 had an elevated 6.42 result. Was referred to a urologist, whom performed a DRE. There was prostate enlargement but no tumor discovered through DRE. After discussing several options, I decided to have a biopsy on Nov 21, 2023.
Dec 5, 2023, I met with my urologist to discuss the findings.
12 core biopsy found 1 of 12 core positive for cancer. The path report was Acinar adenocarcinoma, Gleason score 3+4 = 7, grade group 2, 5/15 mm, 33%
Percentage of pattern 4 is approximately 10% Cribriform pattern 4 is absent.
Staging is T1c
Among the treatment options was AS, RP, and RT.
Feeling that AS was a risk without further data, I asked about adding genomic testing for another piece of data. The urologist submitted for Onco DX genomic testing and the result was a GPS of 60% intermediate high risk. I felt AS was off the table.
I had another PSA on January 19, 2024 and post biopsy was elevated to 9.32.
With the above info, I’m swimming in a sea of uncertainty.
The RO is recommending EBRT with possible ADT due to the genomic data. I have met with 2 RO’s, one wants fiducial markers and one doesn’t.
My Urologist feels confident that either RT or RP will be sufficient for a high cure rate.
The first RO did order a CT scan with contrast. The results were mostly unremarkable, sans a known hernia.
I have waffled between RT and RP mainly because no guarantee that if I have the RP that RT or ADT won’t still be in play at some point. I know that my Urologist has performed many RP’s.
Was leaning toward RP but RT is looking more positive as a first treatment option.. Hopefully I can get some fellow prostate cancer warriors to weigh in on their outlook.
Thanks in advance for taking the time to read this .🙂☮️
Written by
cobrasc429
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Hi C 😃. Bravo one of the best write-ups of a situation! Nice use of paragraphing even! (Not actually joking.)
I'm not 100% sure about whether I should be responding or not. Given that I have high-volume metastatic PCa, I'm doing really well, except for fatigue. I have no disabilities. In terms of therapy, I'm on a triplet therapy program (ADT, ARPI, chemo).
And that's that happened to me - because my diagnosis was way too late (your regular PSA testing is fantastic) and that means that I enjoy never having been subjected to radiation or surgery! I already had high volume mets, notably to my spine. (Again and miraculously, I have no disabilities! And this includes urination etc.)
Nevertheless, a couple of questions:
1. Your PSA seems to be going up quickly (mine hit over 1700). How do you know you don't have metastases? My layperson's understanding is that CT with dye is not so great at finding "micro-mets" compared to MRI or PSMA. And this bit of information would have a big impact on your decision making. (Apparently in some jurisdictions now an MRI is the first imaging that is done after diagnosis for someone in your situation.)
2. You don't have a medical oncologist I think? Sounds like you have great doctors but an MO has a different perspective on this - a whole systems approach, not just a primary focus on a particular organ or a primary focus on a particular therapy. Hormone-based cancer such as prostate cancer or breast cancer is very much about the whole system.
3. Your current options seem focused on destructive intervention. My use of that word is not intended to be prejudicial. But ADT only seems to be an afterthought. Maybe a medical oncologist could show how a drug therapy could be an important part of where you're going.
4. I apologize for this long note which for me is a kind of "what if". Almost two years after my diagnosis I'm doing very well except for the fatigue. But the odd thing for me is that, as I mentioned above, I had no destructive interventions. (This was an amazing decision by my doctors because it was too late.) I see a lot of comments on this forum of people who wish life could go back to normal. And I accept in my case this will never happen. So from this lay person's perspective I imagine that my path could have been similar to yours, only worse. Because if I had caught my PCa earlier then no doubt I would have had destructive interventions and then all the sequelae of that intervention. But with metastases then I would still have the heavy-duty drugs. And thus the worst of both worlds. I understand that if one can catch prostate cancer before it definitely escapes the prostate then that is a fantastic result and if you can ensure it stays that way then you will have a long life expectancy. But with the hope of this being true, if one misses that "the horse has already left the barn", then that seems to be a different situation. As you say, "uncertainty".
A very big success for you C in your decision making and your path forward.
To be honest the only unanswered question is regarding the mets status.
Both RO’s and Urologist state the likelihood of mets at this stage is very low but understandably can’t say zero.
The CT scan was ordered by the first RO due to my mets concern. This wasn’t my first choice as I was advocating for a PSMA but all RO’s and Urologist didn’t believe it would be approved with my current status.
The funny part of this insurance approval for tests are:
1. My RO’s were surprised that the genomic test submitted by my Urologist was approved.
2. My Urologist was surprised that the CT scan was approved.
Obviously the approval process in NW Ohio is as inconsistent as other areas of the US.
No one in my initial team felt a MO was required but I’ve thought about seeking their perspective.
Both RO’s stated that the side effects have been greatly reduced from years ago specifically rectal issues. Interestingly, one RO prefers fiducial markers and the other doesn’t.
Do you exercise? The best outcome improvements come from resistance and cardio. The more the better -- we are talking at least 150 minutes a week. This is "free" medicine and works to help many health conditions and APC treatment side effects.
Did you get a bone density scan (DEXA)? The idea is to get pre-treatment baseline numbers. ADT will accelerate BMD loss and on ADT you stand 0 chance of offsetting it with supplements, vitamins, etc.
The harder early PCA is hit, the better -- see recent trial results ARASENS phase 3, for one. Become familiar with trials relevant to your case and also NCCN treatment guidelines.
You absolutely need to have both an MO and RO. A good urologist will refer you and start you on Firmagon.
No mention of bone density but in all fairness, I haven’t committed to RP or RT yet. That decision will be made soon.
As for exercise, I can’t say I’m an avid exercise buff but have seen and will heed your advice on this matter. It certainly won’t make my health worse.🙂
No mention to date of firmagon but the second opinion from a Cleveland Clinic associated Urologist did mention some clinical trials that he felt might be beneficial.
There are two kinds of RT that are standouts to my way of thinking SBRT and high dose rate brachytherapy, as monotherapies. They are both highly curative and have low side effect profiles:
First, I thank you for sharing of time and knowledge. Hopefully my truncation will not affect your brand,🙂
I’m considering multiple RT’s such as EBRT, SBRT, and HDR Brach. With HDR Brach being currently forefront .
There are individual radio-sensitivities and radio susceptibility concerns that need to be considered. Particularly the latter. I believe that a discussion of what assays are currently available to evaluate this concern is the next step.
What are your thoughts on the aforementioned topic?
Anyways, depending on any future assays, RP might be the better option.
If RP, urosurgeon’s skillset is utmost in better outcomes. Going through that vetting process could be daunting. Most surgeons feel confident in their abilities, I would imagine.
Once a person hears the diagnosis, there’s a sense to do “something” rapidly. I’ve been told that I have time to decide. With that being said, as time passes, the desire to move forward presses harder…
It is unusual to be radiosensitive. But there is a test called PROSTOX, based on a cheek swab, that can test for genetic sensitivity. I know Dr. Kishan is currently running a trial (GARUDA). He tells me that about 15% of patients have genetic sensitivity, and he treats them with lower doses.
I ‘m 68 and had 2-3 Mets, and my PSA came down from 125 to <.006 in about ten months, since April 2023. I . Declined surgery, chemo and radiation. My MO at famous Boston hospital said I’m an Exceptional Responder, and is allowing me a holiday from Relogolix and Darolutemide The bad news is that my testosterone went to 1, and bone density went to hell. Hoping the holiday can bring it back.
In addition to my two meds, I also embraced plant based diet ( no sugar, meat, alcohol, but some fish ( baked but never fried) also supplements such as green tea, melatonin, etc.
Perhaps most importantly, I embraced HITT. For me that was weight room and sprint swimming for 30 minutes and “bouncing/ bounding “, as if on a trampoline, in deep end of pool. Move the lymph
I’m sure some would disagree, but I can feel this drive my immune system after most workouts.
It’s not for faint of heart, and people have said how can you push that hard at 68, but I do, and it has helped…maybe a lot.
That’s why I’m doing my due diligence to the best of my ability to make that decision. Then carry on .. 🙂
It’s good to talk to men that have already been through these different scenarios and hear from them , as opposed to just statistics. Stats are fine but they don’t always tell the whole story.
Same here on the hernia front, at some point I have 1 hernia to repair also.
Happy to answer any questions you might have about my history in my bio. A couple things to consider: 1) it's not uncommon for biopsies to miss the highest grade tumors, 2) it's good to think about Plan B and Plan C when you are deciding about Plan A.
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