Just diagnosed

Well, you are getting a variety of thoughts based on experience. Not sure what I can add, but, here goes.

First, multi-disciplinary team. Specialities may have their bias, a urologist may recommend surgery, that's what they do. But, what does the radiologist and oncologist say?

When deciding on treatment this last time, my oncologist wanted to do 24 months or ADT with the SBRT. I wanted to do six, my radiologist said when the murder boards assessed treatment plans brought to them, oncologist were all over the map about length of ADT and rarely had any ironclad data to support counter arguments. We, emphasis on we, decided on 12 months and go from there. So far, eight months off treatment, feeling great!. Who was right, we'll never know, there is no right decision, only the best decision made based on clinical data, tolerance for risk, and the patient preferences.

Keep in mind statistics, Bell Curve, standard deviations, mean, mode, average....this is a heterogenous disease and you are unlikely to find an agreed upon treatment choice. I had surgery, no incontinence and regained erectile function around 12 months later. I've had radiation treatment three different times, zero side effects. While on ADT, never lost my libido and could achieve usable erections with daily Cialis. So, on a Bell Curve I'm probably several standard deviations to the left.

Talk to your multi-disciplinary team about what other clinical data may be useful in decision making, you have done GS and Decipher, maybe PSADT and PSAV, Genomics, imaging from a PSMA PET. Every scrap of clinical data is vital in making a treatment decision.

While I generally agree with the NCCN CoE idea, you must still assess the patient-doctor style of the specialist. I had a 2nd opinion done by a Director of Urology at a NCCN Center, he was also head of a major North American organization and his resume was impressive. What he was not was an active listener nor was he a shared decision maker. He did not listen to me, recommended perfunctory mono therapy. I fired him, went to Mayo and did triplet therapy, game changer and why I am here 10+ years after diagnosis with high risk PCa. At Mayo my urologist and radiologist disagreed about the results of the C11 Choline scan, leaving me to decide!

A GS 3+3 may mean you have time to make any decisions. "Active" means just that, regular and frequent labs, consults and if necessary, testing to assess whether to continue active surveillance or the clinical data indicates the time had come to make a treatment decision. A question to ask your multi-disciplinary team is what is the risk of staying with active surveillance on your PCa staying localized or becoming advanced. Keep in mind statistics, they may say but it is a SWAG. There is a lot of science behind medicine, but the application of it is the "art" piece.

Keep in mind that the pace of medical research brings constant change to the treatment landscape so every day that passes may change your choices.

As others have said, there are great books on the topic, you can also inform yourself through online resources such as the NCCN guidelines, the Prostate Cancer Foundation and Prostate Cancer Research Institute are invaluable resources. There are others...

Ok, enough rambling.

From my foxhole, you have time to make a decision. If you asked "what would you do Kevin'" keeping in mind I am a layman, not a trained, educated, board certified and licensed medical professional, and knowing what I know now (trust me, 10 years ago when I was diagnosed I didn't) even know what a prostate was!), I would choose active surveillance, build a multi-disciplinary team I had confidence in and enjoy life without all the side effects of any treatment decision!

Kevin

I am also 68 , have Gleason 3+3 /6
PSA that is now 16 , 8/12 cores positive , went to Mayo post biopsy appointment and the Urologist young assistant was who went over results and she was in favor of active surveillance then surgeon came in and said historically this would have been surgically treated however younger Dr would surveil so he agree to monitor PSA for 3 months while I went to Florida for the winter and retest in April. Have you checked out proton guided radiation or other treatments ? Left that appointment more confused so will have to findmore info . I’m going to UFlorida proton guided radiation center in Jacksonville for a tour and will reach out to Mayo about Decipher test and others which weren’t offered .
Still trying to find a process in choosing the best treatment . Any thoughts ?

Hi packman7 - Not much to add to my comments to douglasmayo other than agreeing that a Decipher test would probably be a good idea and may sway your treatment decision. I have not yet checked into proton guided radiation and am probably not a good candidate for focal therapy with my cancer not being localized and in one place. Your 8 of 12 positive cores and 16 psa certainly confirms that you have cancer but before deciding on a definite treatment you might want to attempt to find out about the genomic makeup of that cancer with Decipher or one of the similar tests. Bottom line is that everyone is different and everyone needs to become comfortable with his own treatment decision. I’m probably leaning towards surgery given my very high risk decipher result and strong family history and notwithstanding low risk clinical markers but I just want the best chance of avoiding recurrence.
Best of luck in your journey.

I am definitely considering the prostatectomy however would hate to be one of percentage patients that don’t get function back ie continence or erectile !
Would be nice to m ow all cancer was removed though !

Nice to know all ……

Very similar diagnosis in Aug 2022, PSA 10.5, Gleason 3 + 3, MRI showed no external growth or active lesions. Biopsy was 14 cores. Urologist was concerned due to PSA level, offered Radical if I was so inclined but also recommended Dr. Walsh's book.

I ultimately chose Proton Beam SBRT at Mayo Clinic Rochester, 5 treatments in Jan 2023. Very pleased with decision. PSA is now .6 and still going down, no noticeable side effects, although an MRI for lumbar issues showed radiation scarring on the prostate, (yep, guess that would be expected). Post treatment follow-up has been exceptional and the team at Mayo has been very supportive. Best wishes for full recovery!

I would get a couple of other opinions . Time is on your side Brother ! No need to make quick decisions. Create your own file for "everything related " to this PC ( images, opinions, blood work etc ) . Also have your questions and answers in there from Dr's . This will help you . Let us know of your progress . Who knows Nerve sparing surgery may be the answer if you want to be very aggressive ! I was diagnosed at 57. Gleason 3+4 , so something had to be done inside a year or so . I opted for Surgery in first 3 months . PSA was only 4.1 at time . Surgery was good , but I already had a 2 mm breach ( all type 3 cells though- so this was a God Send ) . the advantage of surgery is you can get a detailed biopsy and cell counts . After surgery over the year the PSA was low at 0.11 , but climbing VERY slowly . At 0.15 I opted for 22 sessions of External Beam Radiation ( EBRT) . that was 2 years ago . Since then my PSA has been down ever since each time . Now my PSA is at ) 0.031 which is darn low !!! , down from 0.042 and 0.050 before that . So , the radiation does work after surgery too ! Its just slower to work !

Hey Packman, You have a lot to think about; but one thing I want to add to the confusing mix is that this disease is a real riddle wrapped in an enigma!
Unlike most cancers in which surgery will “get it all” - and the surgical pathology verifies it - this surgery does NOT get it all maybe 30% if the time even though margins are clear, capsule intact, lymph nodes clear, etc….
Cannot figure it out but those are the stats. Surgery is one option for treatment - and a good choice for many (like me!) - but please don’t think it is superior for getting it all as compared to radiation in its many different forms of delivery.
Not trying to influence your decision either way, but I thought the same way about surgery and I was incorrect in my assumption. Best of luck.

I would think hard about the prostatectomy due to issues with continence!
All the doctors tell you is do your kegels
but if that doesn’t help then you will be like me and in serious doubts about decision.
If I could turn the clock back, I would take my chances with letting my body fight the cancer.
Serious regrets about prostatectomy

I am with Kevin, they caught my cancer early, but it was spreading pretty fast. I panicked and wanted it out of me asap. That was a mistake.RP left me totally insentient and AUS has failed. I just found that there is an ultrasound therapy for prostate cancer./ I would look into it or any other non evasive therapy first,then look to surgery. I for one am totally against radiation though, If I had it to do again I would choose more surveillance and wait as long as I could and see if my body could fight it off.
TE