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My Story So Far - 53yo / PSA 130

Prostate Cancer | Last Active: Apr 22 7:53pm | Replies (28)

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Profile picture for Jeff Marchi @jeffmarc

A few things come to mind right away.

Have you had genetic testing? Somebody that gets prostate cancer this young may have a genetic issue that can make it more aggressive. Speak to your doctor about getting hereditary, genetic testing right away.

While they can spare the nerves with surgery when they do radiation they destroy the nerves. That results in being able to get an erection for a couple of years and then it usually goes away. If they can spare the nerves with surgery, then you can probably get an erection for a long time. The thing is, you are on ADT (Lupron) And it not only takes away the desire to have relations. It also takes away the ability to get an erection..

Were any of these things found in the biopsy intraductal, cribriform,, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive. You have seminal vesicle invasion so that already makes your cancer more aggressive. You can get a second opinion from a specialist in biopsies if you’re Worried about what you are being told.

If you decide on radiation, here are some more information about the ability to treat the prostate area again. (40% of the prostate is left after radiation). This is something doctors don’t usually tell you.
https://connect.mayoclinic.org/discussion/salvage-focal-therapy-and-surgery-equally-effective-after-radiation/
You really want to get a decipher test. That will give you a good idea whether there will be a reoccurrence and how soon. It also can guide treatment, A high decipher score usually means you need to have ADT longer.

As others have said, There is usually no cure for prostate cancer. You can have long-term remission, but the more aggressive, your cancer the less likely it will be long-term.

One thing you have to realize is that the treatments available today allow people to live decades. I’ve had prostate cancer for 16 years starting at 62. I’ve had surgery followed by radiation and after that had three more reoccurrences. I have the genetic problem of BRCA2, which makes my cancer much more aggressive. I’m still around today due to the really great drugs available. I’ve been undetectable for the last 28 months, But it will eventually come back again.

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Replies to "A few things come to mind right away. Have you had genetic testing? Somebody that gets..."

@jeffmarc Thank you so much for this useful information. Because my cancer is already known to be aggressive, my urologist said the genetic test isn't useful. Obviously, with surgery, they will analyze the cancer after the fact - another up vote for the surgical option. All of this is really helpful.

I remain inclined towards surgery - not least because my surgeon is one of the best in the country and essentially said "I can take care of this" with an informed confidence that was reassuring. I fully expect recurrence and that it will be a chronic issue for the rest of my (hopefully very long) life.

Glad to know you're doing so well. Thank you again for sharing.