Beast has returned

[Jvaughan0]

My G9 prostate was removed in 2014. PSA went to <0.1 for 18 months then rose to 0.18. Received 44 doses of radiation and Lupron in 2017. PSA fell to <0.1 until November 2020. However, my PSA level this week was 0.2. Looks like the beast has returned and it is time to seek a MO. I see no reason to return to my local urologist who would start me on Casodex or Lupron which could make it more difficult for a MO to develop a plan of treatment. I live a two and a half hour drive from Duke which seems to be my best place to find a knowledgeable specialist, but I may have to wait three to six weeks for an appointment. Anyone's insights and thoughts would be welcomed.

[6357axbz]

You still have very low PSA, albeit on the rise. I’d wait until you can get an appointment at Duke which seems highly respected by many on this site. I think your right that having urologist start adt might interfere with any plan a Duke MO would have. The PSA rise is coming from somewhere so if it were me I’d get a PSMA Pet-CT scan to pinpoint where and how many locations this is coming from. That would be your baseline going forward.

[Jvaughan0 in reply to 6357axbz]

I needed another voice in my head other than my own. Thanks for being willing to come to my aid with solid advice.

[6357axbz in reply to Jvaughan0]

In order to get the most from the GA68 PSMA scan, which is currently the best and most accurate scan available, your PSA needs to rise to at least between 0.5 to 1.0. That was the recommendation from my MO, Dr. Efstathiou at MD Anderson. She did not want it to rise any higher, a trade off of limiting the cancer from spreading further versus a slightly greater ability of detecting more cancer. Idid have to travel to UCLA for the scan. At the time the scan was not yet FDA approved and it cost me about $2,800. It has since been approved and your medical insurance may pay for it now.

[Jvaughan0 in reply to 6357axbz]

This is really helpful. Thanks again.

[TheTopBanana in reply to Jvaughan0]

My father had a PSMA-scan with PSA 0,2 (also gleason 9) and it showed mets, so not sure it needs to rise further.

[Jvaughan0 in reply to TheTopBanana]

I appreciate your advice. Prostate cancer indeed works in unexpected ways. I was told in 2013 that I had little to worry about since I had annual screenings and my PSA was only slightly elevated. The post op report came back at Gleason 9. My radiologist offered cautious optimism that radiation and drug therapy would do the job two years later. Last year, my family doctor, with good intentions, told me it was ok to go to six month or longer PSA screening since my PSA had been undetectable for almost three years. It is so easy to stop listening to anyone, even to the realities hidden in your own heart. But I read stories such as your own to seek knowledge to support your father and I know the well of compassion is still deep. People still care, and maybe, just maybe, that is the greatest insight of them all.

[TheTopBanana in reply to Jvaughan0]

It was the same with my father, that doctor even said ”wait a year until next PSA-test” but then my father said ”well then I’ll come in 6 months”. When it came back at 0,2 he wished he had checked earlier. Thank you for your kind words! I wish you the best with your scan, let us know how it goes?

[E2-Guy in reply to 6357axbz]

Four years ago I went down to Melbourne, AU for the GA68 PSMA scan since it was not yet approved in the US at that time. My entire cost was about $1700 including air fare from Bangkok, scan (about $600), hotel, food, and site seeing.

[Jvaughan0 in reply to E2-Guy]

Based on what I am reading thanks to guidance gained here, it seems the scan should be available and insurance covered here now. Still, it made me smile to see how you found a silver lining in a dark cloud.

[E2-Guy in reply to Jvaughan0]

The only problem was that it was in May (winter in Melbourne). I froze my butt off!

My PSA rose to 1.3 before I had the scan. The scan identified five sacral lymph nodes which I had excised; however, the surgery only bought me a little more time. Seven months later in April of 2018 my PSA was back up to 0.71 at which time I started using tE2 (transdermal estradiol gel) as mono-ADT; absolutely thrilled with the results! My PSA six weeks ago was 0.003...only side effect is some gynecomastia.

Wishing you the best in this uncertain journey, Ron

[kensawyerwayland in reply to Jvaughan0]

At 77, my Gleason 9 has been going up again (fourth recurrence since 2011). PET scan shows involvement in lower spine, hips, and ribs. After operation, radiations to 3 areas, and hormone therapy, about to begin a trial.

[Jvaughan0]

Thanks Nalakrat. Yes, I know the cells were there and never truly vanished. It was an intentional mental game, a magical thinking that "the cancer is gone" hinged on an ongoing emotionally draining lottery of getting another <0.1 win. But there is no hope in denial or future in emotional bargaining. I have always valued your warrior spirit. I must simply find mine.

[ron_bucher]

See my profile for success I’ve had with Taxotere plus radiation of additional lymph nodes.

[Jvaughan0 in reply to ron_bucher]

It seems you have been on quite a ride yourself. Thanks for information.

[Tall_Allen]

Andrew Armstrong at Duke is one of the best anywhere. You can probably get a televisit sooner.

[Jvaughan0 in reply to Tall_Allen]

Thanks TA

[Oct18 in reply to Tall_Allen]

That’s my Dr

[Karmaji]

Hello Nala jiDuring remission PC cells are in senescence...

I have a feeling that medical guys are waiting for recurrence to sell more expensive drugs...

No work is done on killing senescence pc cells...which should be top priority for any scientific outlook...

May you elaborate on adaptive personal therapies to eliminate cancer and stem cancer cells while in senescence....

I read your thread on this ...

For such an important point we have no feedback from our members.'

Also to evacuate dead cells as they may become food for cancer cells...

I have read on this point but not sure..

Life extension guys have activator pill...some others propose Lipposome quercetin etc.

Statin plus Metformin.

ADT

.exercise ...healthy diet

upbeat state..

As PC is so heterogeneous

sharing the experience by our community is as valuable as clinical tested protocols

Let us not shun snake oil ancestral remedies if shared by our members.....

Thanks

[MateoBeach]

Agree with all the good advice here. Sorry about your BCR. UCLA’s threshold PSA for doing Ga PSMA scan is 0.20. It might well show where the cancer is at that level as it did for me thus permitting targeted treatment of oligomets. That would be good to do early rather than waiting even though some sites may be missed. That’s a trade off. Your cancer appears to be slow growing so far. Good luck.

[Jvaughan0 in reply to MateoBeach]

Knowledge is better than luck. Thanks for adding yours.

[RonnyBaby]

I had a BCR and stayed OFF ADT (which was indicated as being an obvious way to go) until I was able to get a PSMA/PET scan. That was the advice I got, because starting ADT would 'mask' the scans ability to locate the source(s). I was an a self imposed ADT holiday that lasted over 3 years.

My 'scan' came back showing a lot of uptake in the lymph nodes - I was node positive at Dx, (G9) so it came as no surprise, unfortunately.

The initial scans AFTER the BCR found basically 'nothing' significant - until the PSMA/PET scan showed a lot of 'activity' albeit in multiple areas that were 'small' but from an additive point of view showed what the other scans could not detect.

I am back on ADT - bicalutamide monotherapy and waiting to see how the PSA tracks in a few weeks time to see if it has stabilized and ideally, starts to backtrack.

Hopefully, you can get that scan done - at least you'll have a better ability to enact an action plan.

You are also correct about a urologist - you have 'graduated' to a specialist.

[Jvaughan0 in reply to RonnyBaby]

Thanks for sharing your journey.

[j-o-h-n]

Hope for the best..... Dukeit out with Duke...........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/04/2021 5:46 PM DST

[mangeycritter]

Perhaps it's because I'm so handsome, but I had no trouble seeing Dr. Daniel George at Duke. Anyhow, 3 -6 weeks is not a long time imo. I continue under the care of Dr. George and live 7 hours away. Good luck in your efforts.

[Jvaughan0 in reply to mangeycritter]

Being handsome is an asset for sure. I have heard good things about Dr. George as well as several other specialists at Duke. Next steps are first steps and they always face the unknown.

[Bangkok]

Yep. The beast has returned. There probably is no real getting rid of it. After 3 rounds of Lute-177 my PSA fell from 9 to 0.012 ( for 7 months) . After beginning to double I'm back this time with no discernable mets though. My oncologist has started me on 20 rounds of IMRT.Maybe the beast never does but perhaps we can make the battle manageable.