Stymied and worried

[Flydoggy]

An update on were I'm at and hopefully some insight and perhaps guidance from all the collective wisdom gathered here.

Diagnosed Dec. 2015 PSA 13.4 Gleason 5+4=9, RP Jan 6, 2016, followed by 33 sessions of SR to the pelvic bed.

July 26/18 PSA 2.1 Ga-PSMA results Subcentimeter Lymph node mild PSMA uptake with a SUV max of 2.3

Treatment: Aug 4/18 started 6 month ADT. Sept 24/18 surgery removing Lymph node, nodes biopsied post surgery showed negative cancer.

March 20/19 PSA 0.011

Sept 2019 PSA 2.1 Ga-PSMA results no expression

Jan 27/20 PSA 5.8 Ga-PSMA results no expression

Dr. Nat Lenzo out of Australia has talked about the PSMA being turned off and on, but I don't understand how it's working in my situation?

Is there any reason that anyone can see for my non expression of PSMA? Has anyone had a similar experience?

The Doctor in LA that reread my Jan/20 scan from UCLA could not answer that question with my PSA being 5.8?

He did comment that the first scan was probably a false positive being a mild expression and a negative biopsy.

I am thinking that a nine month course of ADT is next. Looking at Lupron with Bicludimide. I am in Vancouver.

Any thoughts would be greatly appreciated.

[tango65]

There are cancers which do not express PSMA . Discuss getting an Axumin PET/CT to see if some of the metastases can be located.

[Tall_Allen]

There are many different kinds of prostate cancer. About 90% of them express PSMA. It's very possible to get more than one type of PC in the same man. PSMA may increase expression over time, and then decrease.

[Flydoggy in reply to Tall_Allen]

Any thoughts about how to best deal with a non expressing PC? I have had great results with ADT to date, but don’t want to strengthen this devil any more than necessary. Should I look at another type of scan to see if I can find it to target it with SBR? So far I seem to have just biochemical recurrence...

[Tall_Allen in reply to Flydoggy]

ADT kills pc that expresses PSMA and pc that doesn't. I don't see any point to chasing metastases without systemic treatment.

[Flydoggy in reply to Tall_Allen]

That’s what I was asking...thanks.

[tango65]

If you use other scan and metastases are detected and your cancer is oligometastatic, the metastases could be treated directly with some advantage in progression free survival.

astro.org/ASTRO/media/ASTRO...

[dmt1121]

I think Tall Allen nailed it. Sometimes the search for our PCa ghosts can consume us. It has consumed me in the past. I am now on Zytiga with virtually undetectable PSA and I am getting used to living with the uncertainty. I have done the RP, chemo, Lupron and SBRT.

It really is about living your life, especially if your scans are negative. None of us know, not even our doctors all that is happening to our bodies, until something new arises. I have decided that spending my time looking for what is or might be happening with my disease is missing the point of living. Perhaps I have this disease because I need to pay attention to my family, friends and go on vacations and enjoy all I have, instead of being consumed by a job.

I am still learning to let go and just keep going. It's hard but it's worth it.

I wish you calm, good health and that you experience the joy that you felt before you were diagnosed. Good luck to you.

[HopingForTheBest1 in reply to dmt1121]

Well said!!!

[Rocketman1960 in reply to dmt1121]

Agree totally. Our paths are similar. Never turn your back on this monster but live your life. We are only as good as our next test. When it comes deal with it then.

[Flydoggy in reply to Rocketman1960]

True story, it seems every time I hit a new challenge, it throws me for a time...takes a bit to come back down to baseline.

[JazzMan42 in reply to dmt1121]

Excellent overview on our common situations. We are missing the point of being alive if we let this monster consume us to the point where we have no joy.

[Flydoggy in reply to dmt1121]

It is easy to get consumed, at which point the bastard always has a seat at your table. Great perspective, thanks for the reminder.

[j-o-h-n]

Fly man fly...........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/08/2020 10:58 AM EST