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Prostate cancer

Posted by timoppermann @timoppermann, Sep 26 7:52pm

Psa from 110 to 228 in 2 months. Pirads 6. Gleason score 8. Prostate 63cm. Cancer tumor 98.6 mm. Also EFE PNI SVI. Severs fatigue and low back pain severe. Urologist said prostatectomy wouldn't really help. Referral to medical oncology, radiation oncology and hormone therapy. How worried should I be and how bad is it.? Getting PET next week.

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timoppermann | @timoppermann | Sep 28 5:04pm
In reply to @mjp0512 "Here's my case so far. Diagnosed Gleason 9 - 5/6/25, also not a surgical candidate -..." + (show)
Profile picture for mjp0512 @mjp0512

Here's my case so far. Diagnosed Gleason 9 - 5/6/25, also not a surgical candidate - referral to genito-urinary oncology; Since I am also a heart failure patient, referral to cardiac oncology scheduled. PSMA PET - 6/6/25 showed multiple local and distant metastasis of lymph and bone (vertebrae). ADT (Orgovyx) started 6/7/25. ARSI (Nubeqa) added 6/10/25 when Dr. got PET results along with referral to radiation oncology. Fiducial markers placed 9/2/25; Radiation to prostate (IGRT x 20) begins 9/30/25. DXA scan scheduled 11/12/25. GUO follow-up scheduled 12/10/25. That's it up to now.... Oh, and between Oncology and Cardiology, throw in half a dozen blood tests along the way to monitor things from pancreas and liver response to medications, to cardiac enzymes and everything in between.

Sorry you had to join our little club. Worry does nothing but make it hard to sleep. I find it better to just get really pissed at the cancer and determined to fight it. Will it kill me? Eventually, maybe, but not today. Best wishes and let us know your progress. My radiation treatment T-shirt...

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@mjp0512 thank you

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thenglm | @thenglm | Sep 28 9:58pm

What can I do for ED? I am currently on radiotherapy, leuprolide, and enzalutamide. This treatment is for my recurring postprostatectomy PC. I am presently using cyfil and dynafill but they are not working at all.

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capatov | @capatov | Sep 29 8:45am

My heart goes out to you and I wish you only the best from your treatments. I agree with what others are saying and have heard of patients with PSA scores many times higher than you that have lived for many years on ADT hormone therapy alone. Now they have Pluvicto as the next option.

Many say due to the large number of men that are or will be impacted by PC...there are new diagnostic and treatment protocols being approved almost daily. Some say PC is quickly becoming a "chronic" health condition treated over time like Diabetes.

Remember what we all must keep in mind no matter what stage we are at. Every day above ground is a blessing.

Prayers going out for you and my fellow PC patients everywhere!

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heavyphil | @heavyphil | Sep 29 5:10pm
In reply to @mkostelecky1962 "Good morning, As always we are greatful for everyone asking questions and sharing personal experiences. Shifting..." + (show)
Profile picture for mkostelecky1962 @mkostelecky1962

Good morning,

As always we are greatful for everyone asking questions and sharing personal experiences.
Shifting gears, my question pertains to Cyberknife radiation. Had a prostatectomy 7-2-25. Pathology showed surrounding lymph nodes were clean. Post prostatectomy ( 8 weeks) my PSA was .30, two weeks later PSA was .43. Second PET scan did
not detect additional cancer. Been reading about Cyberknife radiation, my question is Cyberknife radiation a viable alternative post prostatectomy?

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@mkostelecky1962 Cyberknife is not usually done in your case; usually IMRT with radiation given to prostate bed and pelvic lymph nodes (no matter that the nodes were clear).
It involves anywhere from 25-39 treatments depending on your RO’s preference.
Phil

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jrs619 | @jrs619 | Sep 30 7:51am
In reply to @jeffmarc "Since the cancer has already left your prostate, they usually want to do radiation of the..." + (show)
Profile picture for jeff Marchi @jeffmarc

Since the cancer has already left your prostate, they usually want to do radiation of the prostate, eventually, to stop it from continue to propagate the cancer.

Really need to see the pet scan results to know what is going on. It’s very possible this can be treated and you can continue to live many years. I know people with much higher PSA’s than you that have lived many years.

The lower back pain could be due to metastasis and treatment could reverse it.

Let us know what the results of your PET scan are and what the doctor says you need to do.

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@jeffmarc
Hey Jeff, just want to say thanks for being supportive and keeping up with this blog. It is appreciated by many even if they don’t mentioned it. I’m very been following along by reading the comments and different situations of many it really helps. Thanks again, God Bless You

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xahnegrey40 | @xahnegrey40 | Sep 30 8:46am
In reply to @mjp0512 "Here's my case so far. Diagnosed Gleason 9 - 5/6/25, also not a surgical candidate -..." + (show)
Profile picture for mjp0512 @mjp0512

Here's my case so far. Diagnosed Gleason 9 - 5/6/25, also not a surgical candidate - referral to genito-urinary oncology; Since I am also a heart failure patient, referral to cardiac oncology scheduled. PSMA PET - 6/6/25 showed multiple local and distant metastasis of lymph and bone (vertebrae). ADT (Orgovyx) started 6/7/25. ARSI (Nubeqa) added 6/10/25 when Dr. got PET results along with referral to radiation oncology. Fiducial markers placed 9/2/25; Radiation to prostate (IGRT x 20) begins 9/30/25. DXA scan scheduled 11/12/25. GUO follow-up scheduled 12/10/25. That's it up to now.... Oh, and between Oncology and Cardiology, throw in half a dozen blood tests along the way to monitor things from pancreas and liver response to medications, to cardiac enzymes and everything in between.

Sorry you had to join our little club. Worry does nothing but make it hard to sleep. I find it better to just get really pissed at the cancer and determined to fight it. Will it kill me? Eventually, maybe, but not today. Best wishes and let us know your progress. My radiation treatment T-shirt...

Jump to this post

@mjp0512 good luck today !!- its not a big deal.. done in 20 min- dont wiggle around once they get you in place !!

wear loose easy to slide down pants ( always a must for older guys ! )

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1 reply
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mjp0512 | @mjp0512 | Sep 30 9:32am
In reply to @xahnegrey40 "@mjp0512 good luck today !!- its not a big deal.. done in 20 min- dont wiggle..." + (show)
Profile picture for xahnegrey40 @xahnegrey40

@mjp0512 good luck today !!- its not a big deal.. done in 20 min- dont wiggle around once they get you in place !!

wear loose easy to slide down pants ( always a must for older guys ! )

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@xahnegrey40
Thank you, much appreciated. I bought the gaudiest lounge pants I could find to go with the t-shirt. 😁

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johndavis60 | @johndavis60 | Sep 30 10:03am
In reply to @mjp0512 "Here's my case so far. Diagnosed Gleason 9 - 5/6/25, also not a surgical candidate -..." + (show)
Profile picture for mjp0512 @mjp0512

Here's my case so far. Diagnosed Gleason 9 - 5/6/25, also not a surgical candidate - referral to genito-urinary oncology; Since I am also a heart failure patient, referral to cardiac oncology scheduled. PSMA PET - 6/6/25 showed multiple local and distant metastasis of lymph and bone (vertebrae). ADT (Orgovyx) started 6/7/25. ARSI (Nubeqa) added 6/10/25 when Dr. got PET results along with referral to radiation oncology. Fiducial markers placed 9/2/25; Radiation to prostate (IGRT x 20) begins 9/30/25. DXA scan scheduled 11/12/25. GUO follow-up scheduled 12/10/25. That's it up to now.... Oh, and between Oncology and Cardiology, throw in half a dozen blood tests along the way to monitor things from pancreas and liver response to medications, to cardiac enzymes and everything in between.

Sorry you had to join our little club. Worry does nothing but make it hard to sleep. I find it better to just get really pissed at the cancer and determined to fight it. Will it kill me? Eventually, maybe, but not today. Best wishes and let us know your progress. My radiation treatment T-shirt...

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@mjp0512 Great Message!!
Good luck today! I’m 9 out of 38 radiation treatments done!

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1 reply
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mjp0512 | @mjp0512 | Sep 30 11:43am
In reply to @johndavis60 "@mjp0512 Great Message!! Good luck today! I’m 9 out of 38 radiation treatments done!" + (show)
Profile picture for johndavis60 @johndavis60

@mjp0512 Great Message!!
Good luck today! I’m 9 out of 38 radiation treatments done!

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@johndavis60
Thanks, John! Looks like I'll be done before you. Hope they don't fry anything important. 🤣

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johndavis60 | @johndavis60 | Sep 30 7:37pm

LOL!! What could go wrong?

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