Wait and see where the horse is headed

[Jvaughan0]

Just returned home from my first visit with a Duke MO after my PSA tested at .2 three weeks ago following four years of being undetectable. (Had gland removal in 2014 and radiation/ADT in 2017.)

Today, the MO's counsel:

Have another PSA test every three months. If PSA rises to 0.5 or higher consider PET/CT (PSMA or Axumin)

(It will be another six months or so before Duke has access to gallium 68 scans unless I want to go to California.)

If cancer is the horse, the MO wants to see how fast it will walk or run before adding ADT to my bet.

My take away was "yes, you have cancer that must be monitored, but there are lots of treatment options that can extend your life when the time comes."

I know PSA doubling rate is more important than measurable PSA, but still I am trying to sort through mixed feelings that weren't ready for a wait and see approach.

[GP24]

I agree with your MO. Starting with ADT now will not make you live longer. Avoid the side effects of ADT while you can.

[Hidden]

A rising PSA sucks.. It is the news that all of us undetectables dread. Duke will take care of you . I reckon it , to skating on thin ice in the eye of the storm . APC is one hell of a gig. Keep fighting . Your cool head will prevail. I’ve been on adt six years and up until now no one recommends a break from it for me .No T is a bitch.. A new doctor in a few days hopefully can chart my coarse forward . Good luck JVaughanO!

[Jvaughan0 in reply to Hidden]

I hope you get your break.

[6357axbz]

Go the GA68 PSMA scan route. That will give you the best baseline currently FDA approved and available. PSA needs to get to at least 0.5 for good scan definition. I did this per advice from my MO at MD Anderson. Ended up zapping the few mets found.

[Jvaughan0 in reply to 6357axbz]

Duke doctor said the GA68 won't be available there until mid summer at the earliest. ...sort of confusing since it was FDA approved late last year.

[6357axbz in reply to Jvaughan0]

GA68 has a very short half life and needs to be produced close to where the scans are given. While GA68 is approved as a ligand to be injected and used for the scan, a facility wanting to do the scans must set up a GA68 manufacturing process and have it approved by the FDA.

[Jvaughan0 in reply to 6357axbz]

I guess I am conflicted. For years I have been advised to zap the cells or put them to sleep asap to get the greatest benefit. Now it seems to be a thinking of going slow, avoid ATD as long as possible because there are lots of ways to slow progression once the cancer is better defined. I think I'm disappointed Duke can't offer GA68 for the foreseeable future. I had mentally mapped things out...GA68, zap found sites, start ADT and try to accept cancer as part of my future life. All these things may come to past, but not necessarily within the time frame I envisioned. I'm seriously laughing at myself, feeling like cancer is George Bailey's savings and loan. What you hate most may give you purpose, just not sure who my Clarence Goodbodys are at the moment.

[6357axbz in reply to Jvaughan0]

I wouldn’t avoid adt if I were you. I’d go on it after you get the GA68 psma scan.

[Bigdo58 in reply to Jvaughan0]

I had Davinci3D removal in 2012 at age 53....still going really well now at heading for 63, but only 6 mnths ADT in 2017 adjuvant to full pelvic rads (70gy). I am only now rising again, at .61 though now (.37 last check 5 months back), had Gallium 68 PSMA PET two weeks ago, found nothing. Costs $695 in Australia, if an 'outpatient' at a hospital or just at an imaging place like I went (free in hospital for Australians, if hospital is equipped with it...many are now).

Was hoping to find the Mets & zap. Unfortunately looking like gotta let it travel still, maybe double again to 1.2 and I don't like the risk of the 'genie'!

[Jvaughan0 in reply to Bigdo58]

There is no law of equality in dealing with this genie. However, it seems you have found points of balance for the ride which I appreciate and aspire to reach myself. Disney tends to corrupt every story it retells, but it's genie did say, “In case of emergency, the exits are here, here, here, here…anywhere. Keep your hands and arms inside the carpet.”

[pete-ginger in reply to Jvaughan0]

Last year, it was only approved for UCLA and UCSF. Clinical trials continue in many other orgs.

[Jvaughan0 in reply to pete-ginger]

It seems... bureaucratic... for approval to be spooned out this way. Understandable if public safety was the driving force, but that doesn't seem to always be the case.

[EdBar in reply to 6357axbz]

That’s the same advice I was given by Dr. Sartor, wait till it reaches 0.5, get a PSMA scan, let’s see where it is and zap it.

[Hidden]

Was your radiation to just the prostate bed or the entire pelvis? I am in a similar situation, but using an ultrasensitive test and I just became detectable. I suspect I am going to get the same advice as you, but if its possible to get radiation to the pelvis I might ask about it.

[Jvaughan0 in reply to Hidden]

My doctor said it is still most likely in pelvis lymp nodes. My radiation was primarily directed at prostate bed with some coverage over the entire region. He said eventually cyberknife and/or ATD might be still possible.

[Bigdo58 in reply to Jvaughan0]

This is exactly my path Jvaughan0, got whole of pelvis rads with extra focus on prostate bed and lymph nodes just in case and really clear now it was always probably in the bones somewhere (according to rad onc back just after rads...possibly still not clearly right given PSMA result heavily focussed on hips and spine & calfs which were giving me pain).but you know heading for 5 years again now since BCR and that radiation and still only at .61. So through BCR again, but cyberknife is the game for me, probs with ADT ads well, but gotta find the suckers as Ga 68 PSMA as I said earlier, has just failed to find a thing. Pain was just skeletal, arthritic change.

[Justfor_]

Did you go from undetectable straight to 0.2 or you have some in-between points?

[Jvaughan0 in reply to Justfor_]

After several years of undetectable, my family doctor suggested I extend times between test from three months to six months. In Nov. 2020, my PSA was <0.1, next time in March 2021, PSA climbed to .0.2

[Justfor_ in reply to Jvaughan0]

A two decimal point re-test by a second lab seems in order.

[Jvaughan0 in reply to Justfor_]

I agree, but the best scan I can currently get at Duke is a Axumin which will likely show little now even if my PSA has doubled in three weeks. Insurance approval could take two weeks as well. Seems like another month before I ask my family provider for a retest is reasonable... maybe not three month wait.

[EdBar in reply to Jvaughan0]

PSA should be 2.0 for best Axumin results. It has some usefulness at lower levels but the accuracy falls off significantly. Be wary of the number and frequency of Axumin scans that insurance will cover in a 12 month period as well.

Ed

[Jvaughan0 in reply to EdBar]

Thanks, Ed. Getting straight answers from insurance is a rocky road itself for sure.

[EdBar in reply to Jvaughan0]

You don’t want to burn your Axumin allocation for a period of time on a test that may not be very accurate because PSA is so low.

[Philly13 in reply to Jvaughan0]

You can get your own PSA test at Labcorp of Quest in most states. DirectLabs.com is affiliated with Quest and Lifeextension.com is affiliated with Labcorp. This month Life Extension is selling PSA tests for $23. Direct Labs is $42. One caveat is that each lab seems to have slightly different interpretations. I get monthly tests and sometimes more frequently. I have charted results since diagnosis and prostatectomy at the end of 2017. I feel like my compulsive behavior has saved time when circumstances change. I watch the trend and don't focus on the precise numbers.

[Jvaughan0 in reply to Philly13]

There is really helpful and reasonable. Thanks for the information.

[Justfor_ in reply to Philly13]

You are doing excellently! I do likewise, only difference are the prices here. I am interleaving two labs. Normal prices 16 and 14 Euros. First lab had a promotion yesterday and only paid 5 Euros (6 USD).

[lewicki in reply to Philly13]

does quest do a .000 results?

[Philly13 in reply to lewicki]

I think there is an ultra-sensitive PSA test. Unfortunately, I have not needed three decimal places. If memory serves me they are more expensive. Lifeextension.com lab testing and Directlabs.com are where I buy the tests. They have detailed explanations of each test. I know there are other online sites to buy tests, but I am familiar with these two. New York state and New Jersey did not allow them a couple of years ago when I gave the information to a friend.

[monte1111]

Doctor knows best. Maybe the horse is just grazing.

[Jvaughan0 in reply to monte1111]

Would be nice to think, but I will always reserve judgement on what doctors actually know until hindsight proves them correct.

[hadleycash]

My onc at Duke is Dr. Armstrong, and he is excellent! Even with G68, it is highly unlikely you'll find anything until you're at around .5. Get checked in 3 months and if you're .4 or higher get the G68 in clinical trial at University of Michigan... they have an active trial going. You can get the contact phone number after finding the trial at clinicaltrials.gov . That site will become a dear friend over the years!

[Jvaughan0 in reply to hadleycash]

I have had some doctors who were mostly well-intentioned, but not excellent within their profession. I think I made the right decision in seeking out Dr. Armstrong. As is often the case, time can be patient friend or impatient foe.

[MateoBeach]

So it appears your SRT in 2017 did not treat the entire PLN fields. That is the most important question: is the cancer there where it can be effectively treated with RT plus adjuvant ADT for some time? Or is there metastasis already beyond the pelvis?A Ga177 PSMA scan could show you this now, even at a PSA of 0.2. It did for me at UCLA ( 2 PLNs only and nothing elsewhere). So I could get pelvic RT immediately plus did 6 months of ADT. 16 months later doing well off all treatment, but no proof that I am cured of course.

Alternatively you could wait several month when you might reach 0.5 and the Ga scan maybe available there for you without the travel and expense.

Either I think is reasonable and choice depends on how aggressive you want to be in going after it now. No wrong answer. All of the 3 RO consultants who reviewed my scan had the same recommendation .

[Jvaughan0 in reply to MateoBeach]

Thanks for the advice. It provides mental clarity, allowing me to look beyond the emotions. I think I will let changes in PSA guide me for a moment. One of the brothers, and I do see people here as a band of brothers (even if some are wives' and daughters' of brothers) suggested a home testing kit from the lab I normally use. I don't plan to self treat or develop lab tech skills, but it might provide sense of focus until I get my next real PSA test.

[Explorer08]

I also agree with the conservative "wait & see" approach. I had RRP in 2011, Gleason 9. It took 9 1/2 years for recurrence to rear it's ugly head. I just started with Relugolix four weeks ago. My PSA over those 9 1/2 years was detectable but stayed consistently low at around an average of 0.30 every 90 days. Sometimes it even dipped below 0.10 and stayed there for over a year. Not until recently did it jump and it did jump fast to 3.90. With Gleason 9 I always knew it would happen but ALL docs told me that starting ADT sooner than later has zero statistical impact on life span so better to wait until the data shows that it is needed - - and now I need it. Also, you mentioned Axumin - - I've had two of those scans and have learned that Axumin works far better at PSA levels at 2.00 or above. Your PSA is far below that level.

[Jvaughan0 in reply to Explorer08]

I hope my PSA will remain low until Duke gets clearance to offer Ga68 scans. ...but hope floating on reality more than wishful thinking matters most.