I have looked at many posts but did not see anyone with similar story:
Question: If no RT post RP, presumably ever to the pelvic region, then what? What is the "hit it hard early" treatment option? How worried should we be that he can't have radiation?
Recap: 53 yo husband PSA in Dec 2018 was 33+, finally had RP on May 17, 2018.
Pre/post RP Gleason 7. Primary tumor revised intra operatively to cT4. 27 lymph nodes examined. 5 involved.
Decipher result: no positive surgical margins or BCR; yes: bladder neck invasion, extraprostatic extension, seminal vesicle invasion. Genomic high risk score: .88
8 weeks post treatment saw MO and RO at Dana Farber. UPSA was 0.11. Colonoscopy done Aug 1 to determine eligibility for RT due to mild colitis. RO said only if husband had colectomy which he refused.
This Fri. Aug 23 we return to Boston for 3 month UPSA to determine velocity/nadir. Blood test at 11am. Meeting with MO at 12pm. Hormone shot scheduled for 115pm.
p.s. Just celebrated 20th anniversary with wonderful trip to San Francisco in August.
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HealThyb
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After Robotic assisted rp, was told radiation was out... Damage would out weight benefits. My surgery reveled substantial involvement of nerves and veins and all margins hot; Even tissue sample from posterior of rectum though clean itself had veins and neural involvement of what passed though tissue. PSA climbed from 53 to 63 at 6 week post surgical check. Only place they couldn't find my spiderweb of cancer was my fat. Went to chemo. and between cycles 4 and 5 PSA started to climb again. Added Xtandi and 25% drop per cycle returned. Leveled out after #6 but slowly dropped until side effects made us stop after #9. Had all of your problems except bladder neck.
Xdtani at full 160 mg dose side effects got worse until i was a complete invalid...cut dosage mult. times and settled at 80 mg which I am still on.....
New normal sucks, but after surgery drs. told me I had 12 to max. of 18 mo. to live. Hit it hard, hit it early and I'm till mowing my lawn instead of under it 2 1/2 years later.
Looks like great 20th, I'm working on 40th come Dec.
I had a Gleason 9, 9 / 9 positive samples in 2009, but no spread to other organs so far. Open RP attempted, doc could not proceed because of too much PCa outside capsule preventing him seeing where he was cutting. I had some more samples taken, all were negative, then sewn up.
I had ADT begin 2010, then EBRT 6mths later, and I'm still on ADT, procession of Cosadex, Zytiga, Chemo and recently Lu177, which seems to be working with Xtandi.
But having IMRT after an RP that was done as best as possible sometimes works well if they can identify where Pca is in local areas away from site of RP.
It also sometimes hardly works at all. And all beam RT gives a lot of side effects on bowels and any other organs through which the RT beams go.
I know men who had Psa rise after a "successful RP" where Psa noze dived to say 0.01 right after RP, but then began to rise years later. Often its some little spot of Pca left behind by a surgeon, and it may have been impossible to remove surgically. If Psa noze dives again and never rises, it means there are no mets. But all too often there are mets, and very hard to treat with any IMRT or EBRT so systemic chemo may be tried. Often that does not work, and I was lucky to be able to get Lu177 which goes wherever there is Pca, with little damage to healthy cells, so less side effects than for chemo.
But to get Lu177, there are conditions to be met, special PsMa Ga68 PET / CT scan to have, etc. Although Lu177 does not work for all men, seems like I am getting a good response so far.
Do take care with your beautiful lady I see in the picture, may Nature give you a lot of many good years ahead.
gee, could you be a little more comprehensive? terrific resource, especially the two charts. thanx for posting.
yesterday, a fellow PCa guy mentioned his uro-onc said that finasteride masks growth of disease, artificially lowering PSA readings. Lovely, thought i, because i've been on it for a year, with casodex and tamsulosin, getting a steady PSA<0.1 reading every 3 months.
in 2013, several interpretations of a PCa prevention trial concluded fiansteride improved the PSA test's sensitivity. BUT then i found in Dec. 2018, Dr. Walsh at JHU, who's been disputing that trial ever since, determined the exact factors to multiply PSA readings by, if using finasteride. but to hell with all that.
knowing how thorough you are, you probly know about this, but thought i'd make sure.
Could I be more comprehensive? Well not really. But my experience of Pca and its treatment is never going to be equal to other men's experience.
All our stories give us a guide for being more educated about what might happen; we all want to know, and get the right treatment at the right time to extend life and QOL and so all our stories are a rich resource, are they not Mr RICH22
for sure, our combined experiences comprise one helluva varied trove of data. however, your "other concerns" page was so extensive and analytically informative, i had to pay you homage... annoyingly sarcastic as it was.
In my journey, i'm examining your chart showing 2009-2013, for clues as to what i may be facing. Right now, 50mg/d casodex is doing the trick. i have heard stories, 3 in number, of men who lived out their days with their gland intact, only popping casodex pills. i'm guessing no erections but at least orgasm, maybe retrograde ejaculation, which is my lot now... odd but not unpleasant.
as we know, the ADT combo of a testosterone production inhibitor and another drug that inhibits the Pca cells from utilizing testosterone, is pretty much all we can do, with or without a gland, with or without mets. the toxicities of heavy chemos and radiation? i'm just not sure i'm ever going down that road. why risk chronic pain, incontinence and severe depression, to prolong THAT misery? then again, metastasis may do that anyway! For now, i'll roll the dice using the least amount of hardcore poisons. speaking of which...
i'm on Revlimid for bone marrow cancer, which has to be delivered to my hands only, and signed for by me. Without it, i have ever-diminishing hemoglobin, dangerously low oxygen and weakness i wouldn't wish on enemies. Why this poison attacks only genetically defective hematopoietic (blood stem) cells (-5q MDS), no one knows; they only know it does, and that's good enuff for me.
but really, the fun never ends. the battle goes on, we're so lucky to have all these challenges to excite and delight us... right? who wants boring lack-luster comfort when all this other stuff is so thrilling? ...right? i mean, right?
Congratulations on your 20th, you'll be around to celebrate your 40th (second honeymoon only this time you'll lock yourself in the bathroom and cry)...
Nice picture... looks like the Sausalito side.... If you haven't already gone up the Coit tower go there for a great view. Just below on Lombard street (in bushes) are where my ashes will be spread. I know TMI TMI
Sorry I can't help with your issue... but keep asking here (on another day) for more help and advice.
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RT/RP vs RT/ADT OCSS (overall cancer-specific survival)
No Longer Undetectable
Bummed 3 years post RP 
Meeting with RO - responses
RT for regional recurrence
