Gleason 9 with mets and PCA = 3.7 at time of diagnosis

[Huzzah1]

1st post, I've been reading and learning. Full story is in my bio.

Today marks 3 months since I've started ADT, I just had my second Eligard injection and have completed my second month on Zytiga & Prednisone. I also completed day 15 off 44 - IMRT.

My PSA was 3.7 at the time of diagnosis, I found the cancer due to pushing the urologist for more testing as urinary issues were bothering me. After ADT started, at 1 month, PSA dropped to 1.2 - 2 months down to .2 and at 3 months .1. T has never been very high, 260. Today it's <3ng.

I keep seeing PSA numbers much higher than what I had and read about the importance of tracking those numbers especially should they rise down the road. As my numbers were so low to begin with, what is the significance of that and how would that effect future tracking of that number?

Thanks all.

[Tall_Allen]

It will be more important for you to track progression with imaging than it is for most guys.

[Purple-Bike in reply to Tall_Allen]

Do you think frequent bone-specific ALP and LDH testing, in addition to PSA, plus the occasional cf-dna test, makes imaging unneccesary for the high gleason low psa type, when those markers indicate undetectable PCa? My MO seems to think so. No scan for 16 months, since my only met was spot radiated. GS 9, psa 1.7 at dx.

[Tall_Allen in reply to Purple-Bike]

Why not have an FDG Pet scan to be sure?

[Purple-Bike in reply to Tall_Allen]

Better than CT/ bone scan?

[Tall_Allen in reply to Purple-Bike]

Yes - it may reveal something in low PSA subtypes, when bone metastases are lytic.

[DMohr011]

Welcome to the club, Huzzah, and sorry you are a now member! You have found a great Forum of information and help.

No prizes for low PSA, or i think i would win! 1.2 was mine, gleason 9/10.

What does it mean? Not sure, but like TA said, more imaging than relying on PSA .

Any genetic testing discussed or taken? My testing showed broken MSH2 and super high tumor burden. Made me elligable for Ketruda, which was great until it wasnt..

I hope they kill the shit out of your cancer and you then become undetectable. That is where i am after RT , for now. Current PSA <.01. Scans every 3 months or so.

Sounds like they have things moving in the right dorection for you. I wish you the best!

[Huzzah1 in reply to DMohr011]

Thanks for that! I’ve been feeling very atypical. I did have complete genetic testing and everything came back negative. I’m looking forward to being undetectable!

[BoiledFrog22 in reply to Huzzah1]

I'm 46 my PSA was 29 on diagnosis with G8 and mets in bones and lymph nodes (10 weeks ago). I'm pushing for more regular scans and genetic testing. Docetaxl ongoing. Can I join your outlier club?

[WillowHawk]

You made me smile when you skipped the MO who dissed your wife! You were really on top of things w your interviews. Organized! Good for you getting all over the exercise too!

[foamhand]

Same here, gleason 9 castrate resistant for 2 years now, docetaxel chemo. PSA not reliable, varies between 6-12 (if I take a chemo break) should be in the hundreds by now? Few bone lesions right hip (rod in femur reinforcement), 12 enlarged pelvic lymph nodes, My oncologist doesn't rely o my PSA. CT / bone scans every 3 months.

[Nusch]

Read your bio. Medical advice will come from experts in this forum. I just want to motivate you to continue or even enhance your walking/running and weight lifting exercises. ADT will otherwise make your muscles disappear quickly and walking/running supports/protects your CV system. I think without sports I wouldn’t be, we’re I’m today (details in my bio). Did you consider whole food plant based diet? I strongly believe that animal products were feeding my beast - I loved the big t-bones & co. Regarding supplements there are also experts in this forum. I take turmeric, pomegranate, magnesium (because I sweat a lot running in outside), some K2 and sometimes calcium and B12) because of plant based diet). But generally I keep calcium and B12 at the lower borderline as both may feed PC, too.

I admire your energy to build a team of doctors. Wish you a successful fight!

[MateoBeach]

You are on the path to very good control and hopefully a long happy life living with APC. Yes keep up with disciplined exercise program: the moderate level activity ("aerobic" we used to call it) that you most enjoy, preferably outside in nature as much as possible. And a regular program of intense strength, resistance exercises. Weights, machines or other equivalents. Once a week appears to be as effective as more often, but must be high intensity.

Diet need not be vegetarian or vegan to be supportive. Mediterranean, for example is fine. So some animal protein is okay. but certainly diverse vegetables (leafy greens and cruciferous veggies) and berries (blueberries and rasberries in particular) may be more important thanhigher sugar fruits and juices.

Many of us do use plant derived and natural supplements even though RCT trials have mostly not been done to prove survival benefits in APC. I find the potential benefits vs risks to be favorable even in the absence of definitive proof.

Finally, it is valuable for yourself and for this forum to be something of a researcher or scholar in reviewing published scientific papers to learn more about the effects of interventions on the various stages and variations of APC. It is complex. And we are here for each othe to explore ideas and options. Welcome. Paul / MateoBeach

[dhccpa]

good question. Mine was 200 at diagnosis.

[spouse21]

High Gleason, low PSA can be a different beast. It's good you kept pushing for more testing and also good that nothing unusual showed up on genetic testing. Yes, make sure you and your wife always mention the high Gleason low PSA situation at every visit so you get more frequent imaging. One of my husband's oncologists forgot that and let a year go before ordering scans. When I asked: "Isn't it time for more scans?" he ordered them. My husband was riddled with mets that should've been caught at earlier stage. Now he gets imaged every six months. You sound on top of your situation and in good shape to deal with a horrible cancer. Good luck with your treatments.

[Bigmls7890]

did u have a second opinion on biopsies say at JH jon epsteins group.

[Huzzah1 in reply to Bigmls7890]

I did not have second opinion on biopsy. They were read at Northside Hospital in ATL.