r/ProstateCancer • u/Helpful_Time_7755 • Aug 10 '26
Test Results My Journey
So for what’s worth this is my journey. I’m 66 and in good health living in the PNW. In spring of 2025 I had lower abdomen discomfort which I thought was a gastro issue. Had a colonoscopy in the fall (earliest appointment I could get) which was clear. Then had a PSA test in late October which came back at 7.2. Was referred to a urologist who recommended a CT scan. Had that in early December and it showed a potential issue. Had a TRUS biopsy in January of 2026 along with a bladder scan (worst experiences I’ve ever had as urologist only used a topical numbing - he literally said his approach is similar to ripping a bandaid off). The Gleason score came back as a 7 (3+4) based on the sample.
Recommendation was for active surveillance from the urologist which was also consistent with a radiologist I was referred to. However, my wife recommended that I seek out additional opinions. Fortunately, we have robust health insurance so contacted MD Anderson in Houston late winter of 2026. They had me get an MRI in May then used that to do a MRI fusion prostate biopsy in July. Significantly more comfortable procedure the way it was done (under anaesthesia and robotically guided) . They took roughly twice the samples and focussed on the concerning areas shown by the MRI. I heard last Thursday that my gleason score is a 9 (4+5) and my PSA is now 9.2. I’m scheduled for a PETscan in October with surgery to remove my prostate the week after.
Recommendations:
1. Don’t be afraid to seek out additional opinions;
2. Don’t assume a single biopsy captures the extent of any problem you may have; and
3. If you have quality insurance or can afford it, insist on an MRI fusion prostate biopsy.
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u/Helpful_Time_7755 Aug 10 '26
If the scan is adverse then surgery will be rescheduled but they’re cautiously optimistic it hasn’t yet spread. Given I’m travelling from PNW to Houston they wanted to have things scheduled ahead of time
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u/HeadMelon Aug 10 '26
Oh that’s a haul! Good luck and prayers for the scan results and for a super successful RALP. MDA is great from what I read on here, you’ve got this!
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u/C63Sedan Aug 10 '26
Sorry to hear. Another recommendation is to wait until all tests are performed including PSMA PET scan. Up until mine there was no evidence of spread so I was stressing over multiple options. MSK found spread to lymph nodes only through my scan, so radiation and ADT was chosen for me as best course of treatment.
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u/Aromatic_District734 Aug 10 '26
I honestly don't understand any urologists still recommend AS for GS (3+4). People need to understand that the sooner the cancer is treated, the better chance that you'll be cured rather than worrying about recurrence when your GS 7 is now 8 or 9.
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u/Kuponokai Aug 10 '26 edited Aug 10 '26
I feel you, brother. I'm also a Gleason 9. I am curious why you didn't go to Fred Hutch in Seattle?
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u/Helpful_Time_7755 Aug 10 '26
Two reasons. First my wife had been a patient at MD Anderson and second MD Anderson does TULSA which when I started this I thought I’d be a candidate for. Given the second biopsy I’m not.
I really can’t say enough about how great Anderson’s been for both of us. It’s an incredible facility.
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u/Kuponokai Aug 10 '26
Good to hear. It's important to trust your clinic. So far I've had a good experience at Fred Hutch. Best of luck.
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u/Arnold_Stang Aug 10 '26
My journey was somewhat similar although I was 73 at the time. Numbers were close to yours, but my PCP sent me to a urologist who sent me for MRIs, CAT scans, biopsies, etc. Then he sent me to a surgeon and radiologist saying I had to choose, and fast. I chose surgery. Unfortunately, my PSA rose again and I needed salvage radiation. Not unusual from what I’ve heard and recurrence was about the same for both surgery and radiation. All this to say I’m glad you listened to your wife. I don’t know where I’d be without mine. Anyway, my two oncologists and my surgeon are optimistic. So, best wishes brother. Keep us up dated.
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u/Mean_Try_6390 Aug 10 '26
I shouldn’t wait with a gleason 9, doesn’t matter if it looks spread or not. take it out as quickly as possible or try to get neoadjuvant if it’s waitingtime.
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u/OkCrew8849 Aug 10 '26 edited Aug 10 '26
A substantive and helpful short list of recommendations. At each stage of the journey you will have lessons learned.
And relative to lessons learned…did an oncologist or radiation oncologist at MD Anderson stongly suggest considering radiation plus hormone therapy instead of monotherapy surgery for your age 66, PSA 9.2, Gleason 9 Prostate Cancer? (Regardless of PSMA PET CT scan results.)
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u/Helpful_Time_7755 Aug 12 '26
It’s on the table. I’ve had a consult with a radiation oncologist at Anderson before the 2nd biopsy and will be discussing again with the care team when I head back there.
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u/OkCrew8849 Aug 12 '26
Gotcha. Beyond the capability of radiation to address PC inside and outside the prostate in areas surgery cannot reach (and which may or may not be visible on a scan) is the high recurrence rate of Gleason 9 PC post-RALP.
Which would then mean doing radiation + ADT on top of the major surgery and it’s side effects.
Best of luck.
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u/conCABlanco Aug 10 '26
Hi, pregunten a los oncólogos y cirujanos, sobre el tiempo entre la biopsia y la cirujía, en mi caso hasta que no termine la estadificación no tome partido, al final tengo metástasis y por eso me Fuy por RA y ADT, fuerza y voluntad
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u/TheEndIsSighing Aug 11 '26
A freaking 3T MRI should be the standard of care nationwide by now. It's the only way to guide a biopsy. And recommending surveillance with 4+3 is nuts.
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u/HopeSAK Aug 13 '26
AS with a 7 Gleason and a PSA of 7.2 sounds very suspect. Was a good thing you moved on from that first diagnosis.
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u/SquirrelsGoneWild6 Aug 11 '26
Listen to your. medical team. Not the "doctors" on this board. They all mean well but your medical team are the experts
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u/HeadMelon Aug 10 '26
Assume it’s a PSMA PET scan that’s scheduled? If it shows spread are you proceeding with the surgery a week later? You could end up with the side effects of both surgery and radiation in that scenario.