It's Official I have Prostate Cancer

Sounds like you have made the right choices. When it comes to an oncologist, make sure they are a Genito Urinary Oncologist, They specialize in prostate cancer, unlike medical oncologist that work with all types of cancers. A GU Oncologist keeps up with everything going on With prostate cancer, Things change constantly.

You should try to get to a center of excellence so that multiple people will review what’s going on and can give you the best advice for what to do. A Gleason 8 is aggressive so look for educated/experienced advice.

If you pick radiation Try to get MRI guided radiation. The MERidian machine is what to look for because it has a more focused radiation that affects nearby tissue less

good luck we have all been there

I'm sorry to welcome you to this terrible club. Be sure to start preparing for the future by getting into better shape, hammering your pelvic floor both through kegels and during workouts, lining up more doctors to get additional opinions and preparing yourself for recovery.

Because most of what you will read and hear will be mostly doom and gloom, I want to assure you that you can come out of the other end of this relatively intact. I got my prostate removed just over two weeks ago, zero ED, zero incontinence and I credit that to a skilled surgeon and spending three months physically preparing for life after prostate cancer.

You can do this, we all all here for you!

Reach out with any questions or concerns.
Stay Strong Brother, we got this.

Once I get the results of the MRI PSMA I have to meet with the surgeon to review the procedure etc. I will be sure to ask about Kegels and Pelvic floor exercises to prep for the surgery.

The part that worried me the most was the Gleason score. My urologist thinks it has not spread but that's what the PMSA and MRI is for.

Jeff
Your knowledge and willingness to help others is amazing and so very informative. Thank you for all of your thoughts for so many people. god bless you

I like you had my RP performed 1/27 My Gleason score was 9 grade 5. While My surgeon told me that he got clear margins, truth is he did not. The Pathology showed that I have a T3a that has invaded outside the prostate. I am working on restoring my continance 3 weeks post op with little success although I am trying to do the kegels. I feel as if I have no control over my voluntary urinary flow as if I am paralyzed but am told this is normal at this time. I am told to wait 45-90 days for a post op PSA to determine whether my levels are detectable or not. My problem is that my pre-op PSA was 2.4 and the PSMA pet scan pre RP showed no evidence of spread yet the Gleason 9 and my T3a suggests metastatic disease so I don’t know how a PSA blood test is going to guide further treatment since I am one of those prostate cancer patients that do not produce a lot of PSA as a marker so I plan to consult with GU oncologists that will think outside the box as I have the wait.

Just so you know something about Gleason 8. I know a few people that have lived many years with a Gleason 8. Rick Davis, who founded Ancan.org, Was a Gleason 8 who was treated with radiation at UCSF, at least 15 years ago, Has been cancer Free since then..

It is not a death sentence and with the treatments and drugs they have available today you’re probably going to live a long time. Most prostate cancer patients die of some other cause.

Ancan.org holds weekly meetings for advanced prostate cancer people, And many other meetings for other levels of prostate cancer and for other diseases. Their newsletter that comes out weekly has a lot of information about new things going on in prostate cancer. You can also watch old meetings to get a feel for what’s going on. If you like to get some advice Come to a meeting after your PET scan has been completed.

How interesting that we both got our RP done a day apart! Given that, though, how can you know he didn't get good margins so soon after surgery? In a span of ~2 weeks I would think it unlikely that the spread hadn't already happened prior. With Gleason 9 grade 5 that's pretty serious PC, the chance it spread seems like it would be high regardless of margins.

I attribute my continence to two things: the technique my surgeon used on my urethra and hammering my core and pelvic floor for three months religiously before surgery. I may have been fine regardless, but I hedged my bets.