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Treatment after prostatectomy

Prostate Cancer | Last Active: 14 hours ago | Replies (26)

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@jmacpa

I was diagnosed in Dec and had a Gleason of 9 but I also have the BRCA 2 genetic defect which leaves me predisposed to highly agressive prostate cancer. I am lucky that my doc caught it early because my MRI and PSMA Pet scan show it it all contained in my prostate.

I saw 5 docs after i was diagnosed and i was told that after surgery, because of my genetics, it will (more than likely) return and I will have to go on YEARS of hormone thearpy along with radaition therapy. that didnt sit well with me.

I was lucky to find a study that is targeted to my genetics and am currently enrolled in the NePtune trial at University of Pennsylvania which is 6 months of hormone therapy (Lupron) along with the drug Olaparib. the idea of the study is to "kill" the cancer before surgery and push the chances of reoccurance much further down the road. 2 months into the trial and my PSA has gone from a high of 7 down to .77 with the goal of .1 or lower.

The trial results have been promising and those that have completed the trial and had surgery most have shown NO cancer in their prostate tissue post surgery.

There is no doubt this is a tough road for all of us and we have to find a way grind through it. I would seek out other opinions - look everywhere, see as many docs as you can. In my journey I found that all the surgeons were smart and capabile but not all had the knowlege for MY set of circumstances. When I questioned them about BRCA 2 many had no idea of the effects of that defect and surgery. Keep looking, keep picking the brains of smart docs, and find one that you are comfortable with but don't delay.

In the end, your husband has to keep fighting, flip the bird to cancer, and never give up. Surround him with family, friends, and keep him busy so he doesnt have too much alone time - support is a HUGE part of the mental battle. I dont like to be alone except for when I'm meditating and i focus on my prostate, the cancer cancer and talk to my body saying "look, the cancer is here - GO GET IT!" I'm sure I can't beat it that way but who knows- it sets my vision to the known enemy in my body and to keep fighting it.

My fav song quote is "in life having the upper hand's a myth, your only fighting chance is too stubborn to quit" - Zach Bryan.....

Good luck and sending good vibes your way !

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Replies to "I was diagnosed in Dec and had a Gleason of 9 but I also have the..."

I wish that Neptune trial had been available 15 years ago when I was diagnosed with prostate cancer, I didn’t find out I had BRCA2 until four years ago so for me the PARP is my last drug before chemo or Pluvicto.

You don’t mention your age did you get PC in your 50s or 60s?7

I have run into one person with BRCA2 that took a PARP for a few years and was alive 26 years Past diagnosis. So there’s even hope for a long life with what is available today, and even tomorrow.

Wow..that is amazing. Now I’m wondering if we shouldn’t have had it even removed. He too had a Gleason of 9. Doc here pushed for the surgery and told us it’s a “no brainer” for treatment, because we were hesitant. I said no brainer for you doc, but we don’t know shit about any of this. Then when the decipher came back at .99 he was very insistent. I’ll call Mayo on Monday again. Will be my 3rd time. Feels odd to have to beg to be seen by them. Thanks for taking the time to reply. Appreciate it.