Preparation Thoughts if PSA Rises - Advanced Prostate...

Advanced Prostate Cancer

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Preparation Thoughts if PSA Rises

Moespy profile image
26 Replies

11 years since prostatectomy, after 2 BCR's I had salvage radiation to prostate bed and whole pelvic radiation. The pelvic radiation was followed by 2 years of Lupron. I am currently in my 15th month of Lupron vacation and PSA is undetectable. I have a blood test next week and anxious as usual.

Question for the group. if my PSA increases what would be my next step?

Another PSMA Scan followed by any available radiation depending on results? Apalutamide/Lupron for Hormone Sensitive treatment? Chemo?

Your thoughts and suggestions are appreciated.

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Moespy profile image
Moespy
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26 Replies
Timfc profile image
Timfc

I had a 2 year vacation from ADT when my PSA rose from undetectable to 1.25 in 3 months. Pylarify PET scan showed the same tumor on T9 that was radiated 4 years ago had grown a little and had high uptake. I had a MRI yesterday to evaluate for more radiation. Certainly a PSMA PET scan is a good idea if you get rising PSA and you will hear various opinions about when to do it. Also, ADT as soon as possible after the PET scan. I have started Orgovyx now, but at $999 per month I might rethink that. It sure works well, but the profiteers are very demanding.

Moespy profile image
Moespy in reply toTimfc

My latest Testosterone level is 30. What was your T level when you had the PSA rise.

Timfc profile image
Timfc in reply toMoespy

I had gone up to 420.

Moespy profile image
Moespy in reply toTimfc

I am wondering if my T stays low that my PSA will stay undetectable. Also worrying the PCa is growing while undetectable. Thanks for your response and best wishes!

Chadsdad profile image
Chadsdad in reply toMoespy

I too am having concern about PCa growth with low psa. I first read about it from Dr. Kwon and now a couple of other studies that suggests PSA alone should not be used as the only marker for cancer growth using anti androgen drugs like Erleada. Getting a PSMA scan with a 0 PSA seems to be impossible unless your willing to pay the 7K price. Confidence is low for a standard bone and ct scan. I’m always in the next treatment planning stage.

Moespy profile image
Moespy in reply toChadsdad

If my MO will not order the ultra sensitive PSA test I am going to ask my GP to write me the order. I am now convinced that staying ahead of this thing is the obvious choice. If the ultra sensitive test shows me near 0.1 then I am going back on ADT and adding Apalutamide. I have been getting nocturnal erections as of late so I am thinking my T is recovering. I will know later next week after my blood test.

louschu profile image
louschu in reply toTimfc

If you are on Medicare you will hit the donut hole and it will drop dramatically.

Timfc profile image
Timfc

In a perfect world I would think that if your testosterone stays low, your PSA will too. However, the world that I know is not perfect. Your T will rise, but hopefully your PSA will NOT! It took most of a year for my T to rise after stopping ADT and another year for PSA to rise, but my PSADT has always proven to be very fast once it starts.

Moespy profile image
Moespy

Hi Nal, Good to hear from you. JHU doesn't want to cause me undue anxiety with the multi-point test stating that anything over 0.1 doesn't mean much anyway. To each his own but I am certainly happy as long as I have the <0.1 at this time. Based om my 2 previous BCR's I expect slow movement upwards. My highest post RPL was 0.7 so I will cross that bridge when (or if) the PSA becomes detectable again. Best to you my friend!

Teufelshunde profile image
Teufelshunde in reply toMoespy

Just go to Ultalabtests.com and order the test yourself. Cost is about $50 and you go to local lab like Quest to get draw. Take control of your care!

Moespy profile image
Moespy in reply toTeufelshunde

Can you give us some other tips on how to control of our care. You sound like an expert.

Moespy profile image
Moespy

Nal, Noy a waste of time I will send my MO an email tonight and ask for the 2nd decimal test. I am motivated knowing that the earlier you can quell the PSA the better. Thank you very much for the response.

Jim

timotur profile image
timotur in reply toMoespy

You can just order the "post-prostectemy" PSA test from Ultalabs for about $65 and take the order to Quest/LabCorp to have your blood drawn. This test measures down to <0.02.

ultalabtests.com/test/psa-p...

Schwah profile image
Schwah

I know you hate to do this but that study seems so critical to do many here, might we talk you into posting a link again? Please?

Schwah

GreenStreet profile image
GreenStreet

I seem to remember a European paper about PSA recurrence rates post RP and that 0.03 and above was a key figure which does suggest that ultra sensitive tests are useful in many circumstances. Certainly 3 rises from there but below 0.1 could indicate an issue imho. Not sure I can locate the paper.

Moespy profile image
Moespy

Here is a link to an NIH study which shows a significant assistance for 3 decimal points.

ncbi.nlm.nih.gov/pmc/articl...

GreenStreet profile image
GreenStreet

Yep I think it was. I think they were followed for at least 5 years but that was back in 2017 when I was making decisions about pulling the trigger on SRT or not.

Teufelshunde profile image
Teufelshunde

Sure. Here is the advice. Dont bitch about what the docs wont do that you want them to. Find a new doc (since other advice here tells you that you are at the wrong place) or get it done yourself. Learn, study, ask for advice, and then DO SOMETHING. Or whine.

Moespy profile image
Moespy in reply toTeufelshunde

Very helpful. Thanks!

j-o-h-n profile image
j-o-h-n

I once found a Needle in a haystack..... That was her nickname cause she was so thin....but boy could she sew one on......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 06/12/2022 3:09 PM DST

timotur profile image
timotur

This paper mentions probability of BCR post-prostectomy at levels at 0.01, 0.02, and >0.03, the later has a 98% chance.

ncbi.nlm.nih.gov/pmc/articl...

bglendi53 profile image
bglendi53

My PSA is up to 33 as of a few days ago. My MO took me off Apalutamide ( Erleada ) and Xofigo. I only made it three months on the Xofigo before he realized it's not working for me.Now going on Zytiga and staying on Lupron. I guess they just throw darts at the board to see what sticks. My PSA has been rising everytime for the past 18 months.

Moespy profile image
Moespy in reply tobglendi53

Did you get a PSMA Scan?

timotur profile image
timotur

Yes Nal, good point, an 18mo lead-time is significant…! Posting here for amplification…

Defining failure at uPSA ≥0.03 yielded a median lead-time advantage of 18 months (mean 24 months) over the conventional PSA ≥0.2 definition.

CONCLUSION

uPSA ≥0.03 is an independent factor, identifies BCR more accurately than any traditional risk factors, and confers a significant lead-time advantage. uPSA enables critical decisions regarding timing and indication for post-op RT among high-risk patients following RP.

j-o-h-n profile image
j-o-h-n

The camel did..........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/13/2022 3:43 PM DST

j-o-h-n profile image
j-o-h-n

Remember I'm Orthodox....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/13/2022 6:12 PM DST

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