Newly diagnosed with prostate cancer and still gathering information

Posted by brucemobile @brucemobile, Apr 3 9:59am

I was just diagnosed within the last two weeks. My PSA is 4.1 which I’m thinking isn’t that bad. I was not prepared for the results of the biopsy. Gleason 4+3 intermediate unfavorable. 13 of 15 cores positive. The urologist is favoring surgery. Second opinion also surgery but wants a Pet scan which is in the process of being scheduled. I am in Alabama and expect to be treated here. I am still in the asking questions and doing research stage, at this point I don’t know until after the pet scan if I have any options. The information on the post operative effects ofsurgery goes from mild to wild, I’m concerned. Anyone who can share their experiences would be appreciated.

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Profile picture for jeff Marchi @jeffmarc

That one core that was 4+5 is your Gleason score?. The other cores are irrelevant when it comes to what the doctors rely on.

Gleason nine is very aggressive and you should get to the best place you can go to get treatment.

Not only should you get a PSMA pet scan you should try to get a decipher score which you tell how likely it is that you will have a recurrence. With Gleeson nine recurrence chances are very high.

If you want the best progression free survival be proactive and get the best treatment you can find.

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I also was 4+3 after biopsy in August 2024 but 4+5 after surgery in November. I have some adverse findings - cribriform, bladder neck invasion and so on. I've had two post-op PSA tests - one undetectable and the other 0.02. The urologist agrees recurrence is likely and radiation is next for me. His slow pace concerns me, but Mayo also said it's too early to begin radiation. Next blood test is a month from now. I hate the wait but it appears I have to wait for the next PSA results.

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Profile picture for kjacko @kjacko

I had RP almost two years ago with ZERO incontinence issues. The most difficult thing was after my pathology report came back, my Gleason score was a higher risk than my biopsy showed. Doing great so far. No issues. Hoping and praying for more of the same. You too!

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That seems pretty common. Many people come out of RP perfectly fine. I’m old enough that it isn’t necessarily optimal and personally adverse to surgery. I also have a friend my age whois a med onc. He went RP and is doing great. Good luck to all on the PC journey

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I should also say that without aPSMA Pet Scan. I don’t know how they can say surgery. They should only narrow with all the info in.

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Profile picture for anosmic1 @anosmic1

I also was 4+3 after biopsy in August 2024 but 4+5 after surgery in November. I have some adverse findings - cribriform, bladder neck invasion and so on. I've had two post-op PSA tests - one undetectable and the other 0.02. The urologist agrees recurrence is likely and radiation is next for me. His slow pace concerns me, but Mayo also said it's too early to begin radiation. Next blood test is a month from now. I hate the wait but it appears I have to wait for the next PSA results.

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I was 3+4 after biopsy and 4+3 after surgery, but I had none of the adverse findings that you have. I have BRCA2 However, which causes your DNA to be unable to fix DNA errors that leads to prostate cancer. I’m still alive after 15 years and four reoccurrences

You know already that your cancer is very aggressive and chance of reoccurrence is quite high. Getting a decipher test can tell whether or not your chance of reoccurrence is high medium or low. I know people with Gleason 9 that have lived 20 or 30 years after surgery or radiation. The proper treatment can really extend your life.

You don’t mention your age, but if you are under 70 surgery may make a lot more sense. Yes, it can cause problems. If your doctor can spare your nerves during surgery. It can help a lot to maintain an erection. An MRI can tell the doctor whether or not it’s likely that the nerves can be spared. Long-term results are almost the same with radiation or surgery but if you are younger and have surgery, you can have a radiation later. With a reason nine that is something you should look forward to.

Do you have small or large cribriform in the biopsy report? The answer to that is critical. If your cancer has spread outside the prostate, then radiation sooner is recommended.

There is evidence to support the use of adjuvant radiotherapy in high-risk patients. EORTC 22911, SWOG 8794, and ARO 9602 all showed a biochemical progression-free survival benefit for adjuvant radiotherapy, compared to observation, for patients with adverse pathologic features.2-4 However, the use of adjuvant radiotherapy in clinical practice remains low (estimated < 10% of patients who meet the criteria).

Dr. Efstathiou concluded as follows:
* Early salvage radiotherapy is favored over adjuvant radiotherapy in most patients
* Consider adjuvant radiotherapy in otherwise fit, motivated, very high-risk patients with ≥2 of the following risk factors:
* pT3b-4
* Gleason score 8-10
* pN+ Lymph node Metz
* Decipher score >0.6
* In high-risk patients, use lower thresholds to initiate ‘ultra-early salvage or adjuvant-plus’ radiotherapy
* If giving adjuvant radiotherapy, it implies high-risk disease. Thus, Dr. Efstathiou would recommend treating the prostate bed and pelvic lymph nodes, in addition to short-term versus long-term ADT, depending on risk factors
* May consider genomic classifiers or artificial intelligence tools to help with informed decision-making
* The goal is to avoid (or delay) radiotherapy in those who we can, without missing a window to cure patients who are guaranteed to recur

Here is the link to the article originally posted here by @surftohealth88.
https://www.urotoday.com/conference-highlights/apccc-2024/151546-apccc-2024-debate-how-to-best-manage-a-fit-patient-with-high-risk-localised-and-locally-advanced-prostate-cancer-how-to-select-patients-for-adjuvant-therapy-after-radical-prostatectomy-and-how-to-treat-them.html

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Profile picture for anosmic1 @anosmic1

I also was 4+3 after biopsy in August 2024 but 4+5 after surgery in November. I have some adverse findings - cribriform, bladder neck invasion and so on. I've had two post-op PSA tests - one undetectable and the other 0.02. The urologist agrees recurrence is likely and radiation is next for me. His slow pace concerns me, but Mayo also said it's too early to begin radiation. Next blood test is a month from now. I hate the wait but it appears I have to wait for the next PSA results.

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I am 2 weeks post op, I had a consultation with an RO, he told me that it isn’t common to start treatment early anymore but would prefer monitoring to watch the PSA.

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Profile picture for brucemobile @brucemobile

I am 2 weeks post op, I had a consultation with an RO, he told me that it isn’t common to start treatment early anymore but would prefer monitoring to watch the PSA.

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All of the documentation I have seen recently points to the fact that earlier radiation is really good if you have certain issues. What your doctor says about waiting for the PSA to rise is old news and has been countered by some doctors that have found the results are not good for people that have certain prostate cancer issues.

Here are some information about it from a Doctor who is a very highly respected and very knowledgeable. @surftohealth88 Originally posted this link.

There is evidence to support the use of adjuvant radiotherapy in high-risk patients. EORTC 22911, SWOG 8794, and ARO 9602 all showed a biochemical progression-free survival benefit for adjuvant radiotherapy, compared to observation, for patients with adverse pathologic features.2-4 However, the use of adjuvant radiotherapy in clinical practice remains low (estimated < 10% of patients who meet the criteria).5

Dr. Efstathiou concluded as follows:
* Early salvage radiotherapy is favored over adjuvant radiotherapy in most patients
* Consider adjuvant radiotherapy in otherwise fit, motivated, very high-risk patients with ≥2 of the following risk factors:
* pT3b-4
* Gleason score 8-10
* pN+ Lymph node Metz
* Decipher score >0.6
* In high-risk patients, use lower thresholds to initiate ‘ultra-early salvage or adjuvant-plus’ radiotherapy
* If giving adjuvant radiotherapy, it implies high-risk disease. Thus, Dr. Efstathiou would recommend treating the prostate bed and pelvic lymph nodes, in addition to short-term versus long-term ADT, depending on risk factors
* May consider genomic classifiers or artificial intelligence tools to help with informed decision-making
* The goal is to avoid (or delay) radiotherapy in those who we can, without missing a window to cure patients who are guaranteed to recur

Here is a link to the original article.
https://www.urotoday.com/conference-highlights/apccc-2024/151546-apccc-2024-debate-how-to-best-manage-a-fit-patient-with-high-risk-localised-and-locally-advanced-prostate-cancer-how-to-select-patients-for-adjuvant-therapy-after-radical-prostatectomy-and-how-to-treat-them.html

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I am also newly diagnosed: Gleason 3+4, 1 out of 18 cores positive, 14.5 PSA and a GPS score of 47. Per NCCN guidelines, I fall into the unfavorable, intermeidate risk category because of my PSA is greater than 10. In addition, the GPS genomic score of 47. suggests a very aggressive form of cancer which could have spread to lymph nodes: even though my PSMA PET scan did not show metastitis in April. (These scans are great but are not always perfect)

After having my patholgy report re-read and re-confirmed, I consulted with both surgeons and radiologists so I could decide between surgery and radiation which - in expert hands with the latest tools - have roughly equivalent long term cure rates, but with different side effect profiles. Surgery is in some ways the most invasive form of treatment, but I learned my pre-existing urinary symptoms due to enlarged prostate were likely to be greatly exacerbated with radiation treatment. I was left with one option: surgery which is scheduled for this coming Tuesday.

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Profile picture for soli @soli

I am also newly diagnosed: Gleason 3+4, 1 out of 18 cores positive, 14.5 PSA and a GPS score of 47. Per NCCN guidelines, I fall into the unfavorable, intermeidate risk category because of my PSA is greater than 10. In addition, the GPS genomic score of 47. suggests a very aggressive form of cancer which could have spread to lymph nodes: even though my PSMA PET scan did not show metastitis in April. (These scans are great but are not always perfect)

After having my patholgy report re-read and re-confirmed, I consulted with both surgeons and radiologists so I could decide between surgery and radiation which - in expert hands with the latest tools - have roughly equivalent long term cure rates, but with different side effect profiles. Surgery is in some ways the most invasive form of treatment, but I learned my pre-existing urinary symptoms due to enlarged prostate were likely to be greatly exacerbated with radiation treatment. I was left with one option: surgery which is scheduled for this coming Tuesday.

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I’m 3 weeks post op. You’ve got this. The procedure isn’t as bad as you would think. I wasn’t big on having a catheter and there was some soreness where they inserted the robotics and another when the inflated my abdomen but all things considered I’m doing pretty good. I will keep you in my thoughts as you go through this.

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Profile picture for brucemobile @brucemobile

I’m 3 weeks post op. You’ve got this. The procedure isn’t as bad as you would think. I wasn’t big on having a catheter and there was some soreness where they inserted the robotics and another when the inflated my abdomen but all things considered I’m doing pretty good. I will keep you in my thoughts as you go through this.

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Thanks for sharing your manageable surgical experience and also keeping me in your thoughts.

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No problem, I think everyone here will agree that staying positive is a major factor in the healing process.

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