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.

Mine was UCHealth in Highlands Ranch Colorado. My doctor was one of the first adopters of the DaVinci robot and is one of the top robotic surgeons in the country.

Interesting history: the same doctor used the same robot to remove my kidney and then used the same incisions from 2014 for my prostatectomy. So no new scars. I thought that was cool he could do that.

I do believe working hard on fitness and pelvic floor strength ahead of time was a game changer. For me I never even felt different and I don't feel as though I can hold my bladder for less time than before. Quite literally I can sense or detect no change whatsoever between pre and post op. I was prepared for the sensation of holding or releasing your bladder to be significantly different, but it hasn't been.

This is all to say that when you do regain continence and have a strong pelvic floor then you won't hardly even know anything happened. Keep working on the kegels!

I think you are on the right track - taking an active role in your treatment, educating yourself, willingness to change facilities, willingness to understand, and if necessary, challenge those recommendations. Mayo advertises thier comprehensive team approach to care, but that never happened. I saw a urologist who insisted surgery was the only option for my G9 PC. I was referred by my surgeon to a Mayo RO, but during that appointment, I had to update her about my situation as it was clear my case had never been discussed with her. I had likely BCR 3 months after surgery and confirmation 6 weeks later with a PSADT of < 3 months. I had a PSMA PET scan confirming matastisis. At the follow-up appointment with my surgeon, stage 4 was confirmed, a referral to an RO was made, and I was told to check in with him 6 months later. No ADT was started and no referral to a MO or GU Oncologist was made, despite my request. When I met with the RO, she said ADT & AR & IMRT were needed immediately (the fact is they should have been started 10 weeks earlier) . She started me on Eligard. After considering the issues, I decided to move my care to The University of New Mexico Comprehensive Cancer Center. I was immediately seen by a GU Oncologist who spent an hour with me, answered all my questions, and added abiraterone w/prednisone and recommeded I start 45 sessions of IMRT when my PSA drops below 0.5. I feel like I'm now getting the comprehensive care that I had expected at Mayo. I want to state clearly that I have no competency complaints about my Mayo surgeon, radiation oncologist, or any other staff. Mayo is a wonderful facility, well staffed, and very state of the art. My concern/complaint was the lack of comprehensive coordinated care I thought I would get and the rushed nature of some appointments where I had questions but could feel the surgeon needing to move on. It is worth remembering, each of us is ultimately responsible for our own care and is our own best advocate.

Thanks so much for sharing your case in detail. I am new here so I have little trouble understanding all acronyms - is there any link in this forum for all of those abbreviations. Thanks so much in advance.

Do you have any web links for exercises you did ? Thanks so much in advance .

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.

Thanks so much for sharing your case in detail. I am new here so I have little trouble understanding all acronyms - is there any link in this forum for all of those abbreviations. Thanks so much in advance.

Here are a few:

ADT - androgen deprivation therapy (testosterone inhibitor, like Orgovyx)

ARSI - androgen receptor signaling inhibitor (blocks cancer cells from "seeing" testosterone, like Erleada)

mCRPC - metastatic castrate-resistant prostate cancer (no longer responds to ADT)

mCSPC - metastatic castrate-sensitive prostate cancer (still responds to ADT)

MO - medical oncologist (does chemotherapy)

PCa - prostate cancer

PSA - prostate-specific antigen (main screening/monitoring test)

PSE - PSA test supplemented with an epigenetic test to refine risk assessment — mainly for screening rather than surveillance

RO - radiation oncologist

RP - radical prostatectomy

RT - radiation therapy

uPSA - ultrasensitive PSA test (down to 0.01 or lower) — mainly for surveillance rather than screening

Here is a list of many abbreviations

It all starts with PROPER Kegels - emphasized because there is an improper way to do them that can actually make things much worse. When you have mastered that you incorporate that into other general exercises, i.e., engaging the pelvic floor while doing a squat, the doing that with weights, etc. The best suggestion is to see a pelvic floor therapist long before you need to so they can make sure they get done right, then incorporate that knowledge into any exercise where the core gets engaged - thus making it logical to practice pelvic floor too. Even just getting up and sitting down in a chair can be used to engage/disengage until it become second nature.