Uncertainty regarding prostate grading - Advanced Prostate...

Advanced Prostate Cancer

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Uncertainty regarding prostate grading

CheeseButtie profile image
11 Replies

Is it possible to have a low grade prostate cancer (ISUP) diagnosis but with extra capsular extension?

Thank you

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CheeseButtie profile image
CheeseButtie
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11 Replies
Tall_Allen profile image
Tall_Allen

Yes. But it is high risk, nonetheless.

dac500 profile image
dac500

Yes, it happened to me .

ck722 profile image
ck722

High risk has a little bit of a different meaning these days. The PSMA PET scans can find much smaller bits of cancer than the previous imaging techniques. No longer are we "shooting-in-the-dark".

CheeseButtie profile image
CheeseButtie in reply to ck722

Thank you for your replies.

I am a little confused following the procedure which was a robotic prostatectomy (partner not me) After which it was found to be extra capsular but downgraded to a ISUP grade 1.

The consultant's letter said no further problems anticipated and six monthly PSA tests. But my understanding is that once the tumour has exited the capsule it could be spreading. The next appointment isn't for another 4 weeks after which the PSA will be taken.

Could I be directed to the best place to start hunting for information.

I am so grateful for your expertise.

lowT163 profile image
lowT163 in reply to CheeseButtie

I’m confused also. Sounds like it’s out of the prostate to me. Same wording used on me and I got the full scope of treatment. Good luck.

ck722 profile image
ck722

"Could I be directed to the best place to start hunting for information." Stay here and bounce what your doc says off the people here. Some truly high powered brain power resides here. Also, search the web but be very careful. No supplement has ever cured Pca. None, ever. Don't take turmeric for 7 days prior to a PSA test. It can invalidate the results skewing it artificially low.

dhccpa profile image
dhccpa in reply to ck722

Are you still using fisetin and rectal cannabis?

ck722 profile image
ck722 in reply to dhccpa

yes. I believe it is slowing the progression. PSA=.053

Cooolone profile image
Cooolone

Lol, sorry for the giggle...

Risk stratification is such... Voodoo!

They are neat little boxes to throw patient diagnosis into as a communal group, rather than take the time to establish a genuine personalized risk stratification by focusing on the individual before them. How many have had their specific cancer cells profiled? Sure generic tests are done, but usually more specific testing isn't applied until the generalized care doesn't work... Or manifests itself in a rare form or presentation (ask me how I know) lol.

PSA history, Gleason Score, SOC tests work for a large contingent of patients, so they'll allow that to justify staying in that paradigm... But until we get to a more individualized care mentality, I don't believe numbers and or results will get much better. I'll allow for diagnosis testing isn't quite there to allow for it, or maybe that would slow down care for too many then, but I still feel the current system is too generic for high risk patients. Exhibited by their typical progression through standard of care via risk stratification as their PCa progresses and becomes stringer with each stage. Why when a "High" risk patient is identified, aren't the Extreme therapies available at an earlier stage? Basically, I don't agree with the process of FDA approval for certain drug use, until a patient fails other stages or treatment lines. If a drug has shown efficacy towards a cancer, let a patient use it whenever they want! Maybe, just maybe, some with high risk stratification will benefit.

There is much hocus pocus done with risk stratification... Intermediate, Low, Intermediate High, Low High, High... Yeah? Really? Hmmmmm... Gotta love it! So convenient

Obviously, I've had my morning coffee

Best Regards

Cooolone profile image
Cooolone

Information is available in my bio... Lol, and I've posted about it before. ;)

Cooolone profile image
Cooolone

It is more relevant as to where it is, than what in that case as PCa cells don't typically spread to the appendix... Too much to get into, didn't mean to muddy someone else thread.

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