Active Surveillance Is Over For Me

[Fox2018]

Hello Everybody,

Age 66 and in good general health. No diabetes and not overweight. Only take two medicines at a low dose: Lisinopril and Simvastatin. Sixteen months ago a nodule was felt during annual physical. PSA was 0.90. A biopsy done fifteen months ago showed one core (of 12) with 10% Gleeson 6 (3+3). Did Active Surveillance with a full body bone scan, Prostate 3T mpi MRI, and pelvic MRI and everything was clear. Did 3 month PSA checks since then and they have stayed at 0.90. Went for a one year follow-up biopsy on August 27th and got the following results:

TRUS biopsy - 12 specimens - #1 right lateral base, Prostatic ductal adenocarcinoma, Gleeson's score 8 (4 + 4), Grade Group 4, involving 1 of 2 cores and 10% of the tissue, perineural invasion not identified - #9 left lateral mid, Prostatic adenocarcinoma, Gleeson score 6 (3+3), Grade Group 1, involving 1 of 1 core and 10% of the tissue, perineural invasion not identified - #11 left lateral apex, Prostatic adenocarcinoma, Gleeson score 7 (3+4), Grade group 2, involving 1 of 1 core and 10% of the tissue, 5% of pattern 4 identified in Gleeson score 3+4=7 cancer, perineural invasion not identified - all other 9 samples benign prostatic tissue, no tumor seen - cancer appears to be confined to the prostate

Went to see my doctor two days ago after taking a 3 week long vacation in the Canadian Rockies. He is the Chief of Urology at a center of excellence cancer hospital in Philadelphia for a consultation. We decided not to do radiation (I want it as an option down the road) or focal treatment (scans do not show a defined local area to treat with HIFU or Cyberknife).

So, I am scheduled for robot assisted laproscopic removal of the gland on 11-21-19. Time to do get serious about doing my Kegels. I have a lot of reading to help me with my decision. One of the best books I found is "The Decision" by Dr. John C. McHugh. He is a practicing urologist/surgeon who has prostate cancer. I recommend it to help as a guide to all of your options if you are newly diagnosed.

Mike

[Darryl Partner]

Good that you know that the active in Active Surveillance means jumping on your disease when the numbers warrant. Good for you.

[AS2010]

Good luck, Mike. Sounds like you've done all you could. About 10 percent of men on AS leave it each tear for a variety of reasons. Let us know how how your next phase goes.

[Fox2018 in reply to AS2010]

Hello - will do!

I am already wearing a condom catheter "part-time" on a trial basis to see how they will work post-surgery. Got a free sample bag, hose, and 9 condom sleeves from Conveen to trial.

Mike

[Hidden]

Well sorry to hear that but you went to the proper steps in an orderly manner. Every day I think my day will come to come off AS. I've referred to that book also. Best of luck.

[Fox2018 in reply to Hidden]

Thanks!

[123-Anoka]

Hey Fox2018, I hope everything went well yesterday.

[kayak212]

Dr.McHugh's office is about 4 miles from my house. I have been on AS for 4 1/2 years with gradually increasing PSA to current 11.75% from original DX PSA of 6.87.After 4 annual 3TMRIs,2 blind biopsies and one targeted fusion biopsy in July,2019 I am still resisting any treatment because i will be 80 in March and i have had every MRI and Biopsy 3nd op by Johns Hopkins and my GS of 3+4=7 hasnt changed since May ,2016..JH always finds my cancer to be a little less than the local Pathologists .I just broke up with my Urol at Emery...he wants me to start EBRT or to at least agree to start it if/when PSA exceeds 15...Just wanting to base a treatment decision solely on PSA increase is enough for me to find a new Urol! Anyway I have looked at going to McHugh several times but he has had his prostate removed and i dont know if his attitude would be conducive to AS in my case. I just had a Prolaris Biopsy Test completed and it wasnt great but was about consistent with what my July biopsy suggested. If i were younger like you i would already probably have opted for treatment, but with heart disease and Type 2 Diabetes, I dont expect to last more than 10 years and the PC life expectancy nomograns alrways say i will probably be one of the 98 of 100 who die from something other than PC. Still, i want to continue having my PC monitored ...never say never on treatment...my Cardio and Diabetes docs say given my good condition I shouldnt count on going down from those conditions in next 10 years.. might consider either SBRT or maybe some new form of treatment like Tulsa. Wish you the best of luck going forward. If it wasnt for a wonderful help site like this one and others we PC patients on AS would all probably be insane by now.