It's Official I have Prostate Cancer

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.

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.

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.

Hey Mish, sorry about those results, but today’s treatment options turn a once lethal disease into a manageable chronic one.
You will probably be placed on ADT as you heal before undergoing salvage radiation. As you correctly point out, PSA does not supply a good basis for treatment in your case, so no matter how low your post-op PSA is, you cannot wait IMO for the magic .2 before initiating salvage treatment.
Also, be sure your RO is including the pelvic lymph nodes and not just the prostate bed - something like 35% of failed salvage rad. occurs in the nodes. Best
Phil

My surgeon told me that he got clean margins immediately after surgery. Obviously until the surgical pathology came back and showed he didn't get clean margins, I had hoped that he was correct but I now know that his statement was premature. My surgery was complicated by the fact that 3 months earlier i had laparoscopic inguinal hernia and umbilical hernia repaid with mesh so he could not take a chance and disrupt the mesh to do lymph node dissection. I know I need to be patient but it is hard not knowing what my future holds. I am struggling with the Kegel exercises and remain incontinent. I wish I could say after ~3 weeks I am seeing less incontinence but not the case. You were smart for hammering your core and pelvic floor before your surgery. I was not so smart. where was your RP performed? Mine was at Mayo in Phoenix.

Hey Phil
A quick question. Everyone says nothing can be done until I heal and I have to wait 90 days from surgery. Do you have any thoughts on exactly what is meant by "after you heal" Any reason that that ADT can't be considered 30 or 45 days post surgery? Any thoughts on this. Thanks Phil.

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!

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.