It's Official I have Prostate Cancer

My Gleason 8 was 4+4

I'm the poster child for what happens when you don't do enough kegels. I'm now 13 weeks past surgery and incontinence remains a regular concern for me. The one caveat is that my cancer apparently spread into the bladder neck, which increases leaking.

I'm also annoyed with my urologist. I had my follow-up appointment scheduled for next week, but got a call on Friday that I can delay a week and see an assistant, or wait another 2 months to see the guy who did my surgery. After my Gleason went from 4+3 at the biopsy in July to 4+5 during surgery in November, I'm not in a patient mood.

A GS 4+4 puts you in high risk.

You may not have the clinical data necessary to make a treatment decision.

The PSMA, MRI are two additional data points.

Other useful data points to share with the group may be any PSA tests you've had and the biopsy report.

With that additional clinical data, you and your medical team will be able to make a better informed decision. I say better because given the dizzying array of choices, nit sure their is an absolute right decision.

That data can also help the members of this forum give their experience as it relates to your clinical data.

I was diagnosed in January 2014. Choices were binary, surgery, brachytherapy.

The CT and MRI "showed nothing" so surgery it was! The MSKCC monogram - https://www.mskcc.org/nomograms/prostate gave me a 30% chance of BCR. That meant 70% chance of not...

18 months later, BCR...

You have several options:

Surgery if the clinical data indicates no spread. I say indicate, it is not guaranteed.

You could discuss doublet or triplet therapy with your medical team if the clinical data indicates spread - https://dailynews.ascopubs.org/do/would-you-use-doublet-therapy-and-not-triplet-therapy-patient-newly-diagnosed-mhspc

Certainly bring a radiologist into the discussion.

Read through the NCCN guidelines too - https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1459

You have gotten good ideas from the others. Keep in mind statistics, Bell Curve, standard deviations, averages....I did not do any kegel exercises, when the catheter came out, zero incontinence! Why, maybe the skill of the surgeon?

Kevin

I never did any kegels before or after surgery. Really had no incontinence to speak of either, At least for eight years after surgery.

Everybody’s different.

At this point, your urologist is really not the guy you want to see. You’re done with urology you have to move onto oncology to get the proper treatment.

You have a Gleason nine that is very aggressive. You want to get yourself to a center of excellence or a Genito urinary oncologist to guide your future treatment.

It sounds like your issue is more complex and kegels may not have been effective or may have needed to be done for quite a while before things correct.

Don’t be hard on yourself, there are things that can be done to correct heavy incontinence, from medications to surgical solutions.

I had a very good surgeon who used an unusual technique on me, one usually only done after there is stress incontinence and is proven to be 95%+ effective - since he was in there already it made sense for him to do that. I also did kegels and hammered my core for 4 months before surgery. I walked away with no incontinence nor any ED, it could be the work, could be the surgeon, could be luck.

Don’t kick yourself, I think luck of the draw in cancer is pretty common.

Thank you for your guidance. Very insightful.

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.

WOW, that's not good.

I saw another reply that incontinence, or lack of, may be linked to the surgeon. I am not knowledgeable enough to expound on that. BUT, as I did my post-op PT, the person indicated to me she has two other clients who were 6+ months after surgery who still had incontinence issues - neither had done pre-op PT. That's another reason why I recommend it.

Still, the best of luck to you.

I'm a huge advocate for pre-op PT. I spent 4 months physically preparing for surgery because it's literally the only part of the treatment that I had a modicum of control over and, by God, I was going to control what I could. I think that has led to a better than expected recovery for me.

That’s a terrible and unfortunate story, Steve - NEVER should have happened. But fear not, ALL of the vaunted cancer institutes we always recommend have similar horror stories.
I met a nice guy during salvage therapy who had surgery at Sloan and when his PSA started to climb his surgeon told him not to worry since he was “cured”. His next 3 month PSA was even higher - but guess what? - his surgeon had left Sloan ( or got booted) and when the patient tracked him down to his new hospital he refused to speak with him and it got ugly in the waiting room - this is Long Island, OK? Shit happens!😄
So he goes back to Sloan for a consult and the RO couldn’t believe his ex-colleague told him he was cured when his post op PSA was like .7…
It’s a minefield out there and it’s hard to know where to plant your feet sometimes.
Glad you had the presence of mind to know you were being jerked around and found a better facility.
Phil