1. < Prostate Cancer

How could they get my diagnosis so wrong.

Posted by pianoman @philipbrachko, Sep 16, 2023

August 8, 2022 diagnosed with Stage 4 metastatic PC. GS 8, Cancer spread to lymph nodes, seminal veseciles, and bone. After 8 months of ADT decided to have RALRP on July 18th 2023. Results of pathology, small tumor on right side of prostate < 5% of volume. NO METASTISIS , everything else clear. Now considered cancer free. Impotent and incontinent. WTF

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pianoman | @philipbrachko | Sep 17, 2023
In reply to @edmond1971 "Lots to cover here and thank you for sharing your situation and I'm sure you will..." + (show)
@edmond1971

Lots to cover here and thank you for sharing your situation and I'm sure you will get lots of help.

Baseline information - It would be helpful to learn more about your age, overall health, comorbidities, PSA history, specific results from PSMA PET scan. These factors and findings play a significant role in understanding the guidance provided by your health team and also the individual decision making that you had to figure out.

ADT treatment - 8 months of ADT is a long enough stretch of time that you should have seen measurable results in terms of lowering PSA, hopefully to < 0.1, and building on that information it would help to have a better sense of the decision for RALP and the extent of the cancer at that moment in time.

RALP surgery - The best results from a surgery is pathology that confirms the cancer is isolated to the organ, the risks are surely present in terms of incontinence and impotence. The path forward for bringing normalcy to these quality of life factors can range from a few weeks to a few years, it really varies and does depend on your health going into the surgery. For the incontinence, definitely go the direction of Kegel exercise and with time you will have better control of your bladder. For the impotence, it would be helpful to get a sense from the surgeon if the nerves were spared, but even if they were, it can take time for things to wake up. Also realize that an orgasm happens in your brain, so while it might not be 'the way it used to be', you can still find that pleasure.

Most of all, be easy on yourself. Prostate Cancer is a challenge and every patient is different and life isn't made of perfect decisions. I think you are in a good spot to (1) confirm the cancer is gone and stick with a healthy diet to prevent biochemical recurrence and get annual PSA tests, (2) work on bladder control muscles and be patient, (3) be patient with the sex drive and just be lucky you aren't on ADT anymore, for those of us on ADT, the drive itself is gone, less so the function.

Keep the Faith

Jump to this post

I'm 73, perfect health otherwise, very athletic before all this. Was on HRT for 12 years. PSA was undetectable for 10 months before surgery. Had DNA testing done, all 77 cancer markers were negative. No family history of PC. PSMA said regional metastatic PC. The latest MRI and CT scan 7 months before surgery showed that everything was normal size and the CT scan stipulated that everything was grossly unremarkable,( couldn't find any evidence of cancer)

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pianoman | @philipbrachko | Sep 17, 2023
In reply to @philipbrachko "I asked for one, the rule is if you have ADT or radiation they won't do..." + (show)
@philipbrachko

I asked for one, the rule is if you have ADT or radiation they won't do a decipher test.

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Thanks for the link to pubmed, Very informative, The pathology report was state of the art and reviewed by a tumor board of pathologist. They did say that my results were likely do to treatment effect. However, they concluded that the cancer never metastasized beyond the prostate . There was a lot of disagreement among my scans, I guess the Doctor chose the ones that would justify radiation or surgery. If they were correct in the tumor being < 5%, perhaps a TURP could have been performed, just to remove the tumor. Keep in mind Gleason is only 80% accurate at best and there are a lot of < 50% accuracy.

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jc76 | @jc76 | Sep 17, 2023

pianoman, too bad. I had my biopsies done at Jacksonville Mayo and my first consultation at Mayo oncology/radiology. I had not decided on treatments.

During my consultation with oncologist/radiologist at Mayo Clinic (after my results from biopsie showed cancer, gleason score, stage, agressiveness) he asked if I wanted to do a Decipher test as would be more accurate to determine agressiveness of the cancer. This Decipher test gave me the information I needed to make decisions on treatments.

I am not sure where you are going but does not sound like someplace I would like. But having said that it really depends on where you live and ability to travel to centers that can offer you more. I know if I lived closer to Rochester or Phoenix I would gone there for their proton radiation treatments as Jacksonville does not have it yet.

But I am in Florida and just to far along with having to stay there for treatments. My wife is a Diabetic 1 just diagnozed in May of last year and has yet to get it under complete control so staying close to home and Mayo Jacksonville (where she is treated) was another factor. She gets excellent care there and great providers.

Good luck and hope things work out for you!!

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2 replies
natem | @natem | Sep 17, 2023
In reply to @philipbrachko "I had 2 MRI's, 3 CT scans, 1 Bone scan, 1 PSMA scan and Gleason score..." + (show)
@philipbrachko

I had 2 MRI's, 3 CT scans, 1 Bone scan, 1 PSMA scan and Gleason score 8.
1 MRI and 1 PSMA scan were in agreement on Metastasis. The bone scan was negative, the rest were inconclusive. There wasn't enough tumor after surgery to do another Biopsy.

Jump to this post

Don't they have to do a biopsy to get a Gleason 8? If so, are multiple reports mixed up or wrong? Sounds horrific on it's face.

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2 replies
pianoman | @philipbrachko | Sep 18, 2023
In reply to @jc76 "pianoman, too bad. I had my biopsies done at Jacksonville Mayo and my first consultation at..." + (show)
@jc76

pianoman, too bad. I had my biopsies done at Jacksonville Mayo and my first consultation at Mayo oncology/radiology. I had not decided on treatments.

During my consultation with oncologist/radiologist at Mayo Clinic (after my results from biopsie showed cancer, gleason score, stage, agressiveness) he asked if I wanted to do a Decipher test as would be more accurate to determine agressiveness of the cancer. This Decipher test gave me the information I needed to make decisions on treatments.

I am not sure where you are going but does not sound like someplace I would like. But having said that it really depends on where you live and ability to travel to centers that can offer you more. I know if I lived closer to Rochester or Phoenix I would gone there for their proton radiation treatments as Jacksonville does not have it yet.

But I am in Florida and just to far along with having to stay there for treatments. My wife is a Diabetic 1 just diagnozed in May of last year and has yet to get it under complete control so staying close to home and Mayo Jacksonville (where she is treated) was another factor. She gets excellent care there and great providers.

Good luck and hope things work out for you!!

Jump to this post

At the time they did not offer me a decipher test. After RALP I requested a decipher test, was told that once you have ADT they can't do it. So I requested another Gleason test, was told the tumor was so small that there was nothing left to test. I am grateful though. I am cancer free and was told that there was no Metastasis .

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pianoman | @philipbrachko | Sep 18, 2023
In reply to @natem "Don't they have to do a biopsy to get a Gleason 8? If so, are multiple..." + (show)
@natem

Don't they have to do a biopsy to get a Gleason 8? If so, are multiple reports mixed up or wrong? Sounds horrific on it's face.

Jump to this post

I had a Gleason test Aug. 2022 Score 8. After the RALRP I was told that the tumor was so small < 5% of volume ,that there was nothing left to test, after removal. I am grateful though, cancer free and no metastasis . I can do what ever I want. Making progress on the incontinence, 9 weeks now. I believe in time that the ED can be corrected.

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undetectable | @undetectable | Sep 18, 2023

Sounds like all will work out in the end, phew! Was it always your plan to do ADT for x amount of time and then have RP? Are your docs saying that ADT killed your metastasis and shrank your tumor? Or are they admitting there was a mixup?

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lyricw | @lyricw | Sep 18, 2023

Is the prostate removed intact as one piece or is the prostate removed in multiple pieces? It se s like enough lesion would be present for biopsy unless ADT made the residual atrophy to non-existent.

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ozelli | @ozelli | Sep 19, 2023

You said that "PSMA said regional metastatic PC". Was that done prior to ADT?

How many mets were there? Single met to lymph node?

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1 reply
edmond1971 | @edmond1971 | Sep 19, 2023

Thank you for replying back with helpful information, it sounds like you have a positive outlook going forward and terrific to hear that you are making progress on the incontinence and likely you can make similar progress with the ED. It would be good to look at the surgery report and confirm with your surgeon that the procedure sparred the nerves. Last but not least, continue to get annual PSA and maintain your excellent health, it is unfortunate that biochemical reoccurrence happens (even with clear margins and 0.0 PSA), so keep on living and enjoy.

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