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Just diagnosed

Prostate Cancer | Last Active: 1 day ago | Replies (23)

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@kujhawk1978

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

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Replies to "Well, you are getting a variety of thoughts based on experience. Not sure what I can..."

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