Hello

Diag Jan 2018 at age 58, RP May 2018, G9, BRCA2, also have bladder cancer TURBT successful March 2018. PMSA scan Sep 2018, bcr and stage IVA, LUPRON 12/7/18 with bicalutimide after which PSA dropped from 1.06 to 0.46 and then started generic zytiga 12/28 and dropped the bicalutimide, PSA went to 0.02 two weeks later. SRT started 1/16/2019. Not on any other medications and otherwise in good health and very fit (also had testosterone off the charts).

[tom67inMA]

Hello PSA0point02, I also got the double of prostate and bladder cancer. I had my TURBT about two hours after my first radiation treatment to a prostate met on my spine. I'm highly suspicious I may also have BRCA2, but haven't been tested yet. Have your doctors been able to do anything with the knowledge that you have the mutation? PARP inhibitors?

Welcome to the forum, and enjoy your low PSA!

[Hidden in reply to tom67inMA]

Thanks for the kind welcome, sir. My mother (who just turned 89, btw, had a double about 25 years ago and a hysterectomy) got tested after my older brother got PCa and then tested positive for BRCA2 expressed. So I got tested. Doesn't really make much difference at this point but may factor in with treatments later on, including PARP inhibitors, as you say. Also seems to respond well to platinum, or at least, that's what I hear. I hope when my sons in their 20s are old enough the idea of preventative RP for men can become as acceptable and insurance payable as preventative mastectomy.

[E2-Guy in reply to Hidden]

I like your comment regarding a "preventative RP". I have often said that if I knew 25 years what I know now, I would have opted for an RP then. My significant family history always instilled the belief in me that the question of developing PCA was not, 'Will I', but 'When'? I don't miss the bastard one bit...just useless weight on the drag strip! Excellent alternative to a vasectomy. My doctor says, "It's nothing but an incubator." My older brother had his removed when his PSA reached 2.2, Gleason 6, and that was about 20 years ago. Post RP PSA has always been undetectable... he has no regrets!

[Hidden in reply to E2-Guy]

How did he manage to get anyone to agree to do it, though? I think my sons should plan around age 40.

[E2-Guy in reply to Hidden]

His urologist told him to wait; however, because of grandpa's, dad's and his two brothers' PCa history, he demanded a biopsy and the subsequent RP. I have been telling my 38 year old son exactly what you're saying. I'm the third generation with PCa. My grandfather's brother and his son also had this sh*t. My dad's brother's son has it, and dad's sister's two boys have it. That's 11 in the family that I'm 'aware' of. Gee, I wonder if there's a correlation?

I think Tall_Allen may disagree...he would probably suggest AS or SBRT. A very difficult decision to say the least!

[Hidden]

Thanks. That's my plan, exercise a lot and eat well, not because it's good for me but because that's what I do anyway, but I'll probably be upping the ante. Played tennis pretty hard this morning for 90 min then went and had radiation, then went to my job.

[AlanMeyer]

Congratulations on your PSA response. From what I've read, the better the response and the lower your PSA goes, the longer you'll live. Your 0.02 is an excellent response.

When you say that your PSA dropped from 1.06, do you mean that your highest PSA reading before any treatment was 1.06? If so that presumably means that you have a cancer that doesn't produce much PSA - which is not a great sign and means that you may have a neuroendocrine or other unusual form of the disease and may need PARP inhibitor or platinum chemo treatment some day. Many medical oncologists may not have any experience with that. It may therefore be important for you to be treated by a very competent and up to date medical oncologist at one of the teaching and research hospitals. See: en.wikipedia.org/wiki/NCI-d...

Best of luck.

Alan

[Hidden in reply to AlanMeyer]

Sorry, to be clear I was talking of bcr since the RALP. My nadir was 0.19 . The peak before the LUPRON was 1.06, tripling in the two months before LUPRON. Just prior to the RALP last May my untreated peak was just over 20. Pathology report and recovery from surgery were excellent but I never went indetectable, so recurrence or simple continuation, I don’t know. Surgeon was excellent. Dr David Miller at U of M in Ann Arbor.

[AlanMeyer in reply to Hidden]

Got it.

It sounds like you've got the garden variety cancer :), not the neuroendocrine that I feared.

It's still looking like your response to hormone therapy has been excellent. The initial PSA drop of more than 50% in only three weeks was really very good. It usually comes down more slowly. The addition of Zytiga indicates that your doctor is using the latest evidence that shows that Zytiga + Lupron provides a significantly longer remission than Zytiga only given after Lupron failure. And the response to that, PSA = .02 in only two more weeks is outstanding. If your luck holds, there's a chance that the SRT will finish off the cancer - though your doctor will probably want you to stay on ADT for some time after the end of radiation in order to nail any remaining cancer cells in the body.

You may get a get out of jail free card on this, but if you don't, I think you'll still have a very, very, long lasting remission with drug therapy.

Best of luck

Alan

[Hidden in reply to AlanMeyer]

I am sure you are right. G9 is gnarly. Still sticking with the program, though.

[j-o-h-n]

Greetings... PSA0.02 Keep your eye on the decimal...Get the point?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/18/2019 5:13 PM EST