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Anyone with aggressive prostate cancer (Gleason 9) and low PSA?
Hi Everyone,
I’ve recently completed treatment for prostate cancer (Gleason score 9). Thankfully, the tumors had not spread beyond the prostate.
My treatment included:
- 42 sessions of Halcyon radiotherapy
- 2 years of Eligard injections
One challenge I faced was a delay of 11 months between diagnosis and the start of treatment. This was mainly because my PSA level was only 1.9, so my case was initially considered non‑urgent despite the aggressive cancer.
I finished the radiotherapy 2 years ago and the Eiligard injections 2 weeks ago. However, for the past6 months or so I have been dealing with a persistent burning sensation when I need to urinate. My urologist believes this is a side effect of the radiotherapy.
I’d really appreciate hearing from others who may have had:
- Aggressive prostate cancer with a low PSA level
- Experience with how monitoring is done in such cases, especially how the nadir is assessed
Thank you in advance for sharing your experiences and insights.
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@melvinw Love the pun, Mel!
Update
I changed my eurologist and he suggested I try Tamulosin (Flowmax), I took this for 2 weeks and it did not help at all.
I am now trying Microtonorm (propiverinehydrochlorid). Anyone one had this had this prescribed?
In 2021 with a PSA of only 1.5 I was also diagnosed with Gleason 8-9, leading to my second round of Cyberknife after 8 years. When my Seattle RO asked for a second biopsy, the local urologist laughed since I only had a PSA of 1.5. He stopped laughing when the Gleason 8-9 came back.
Don't know with what technology you were treated, but several months after my 2nd round of Cyberknife I experienced what is called a "radiation flareup," which felt like the worst UTI ever and lasted a few months. This is apparently a phenomenon typically associated only with high-dosage treatments like Cyberknife.