Am I crazy to think this is better news than we could expect?
Husband is 53, diagnosed at 50 with Gleason 8, PSA 16, mets to 20+ enlarged lymph nodes in pelvis and possible 2 bone mets to iliac (lymph nodes and bone did not show up on bone scan or ct, only on mri, and the bone ones were very inconclusive). We did 36 days of full pelvic radiation, two years of lupron and one year zytiga.
He has been off lupron since December 2021, and off zytiga since august 2021 (he could only tolerate a year). PSA and T were both down to undetectable the entire time.
We don’t know todays PSA as we get that in a week, but 2 months ago it was .15. Still pretty low, but it went up quickly enough over a 3 month period that a PSMA was ordered. I’m sure it’s higher now.
The PSMA results show 2 lymph nodes with uptake in the pelvis and 2 inconclusive.
“FINDINGS:
PROSTATE/PROSTATE BED EVALUATION:
No abnormal uptake in the prostate gland
LYMPH NODE EVALUATION:
Two nonenlarged radiotracer-avid lymph nodes:
-Left pelvic sidewall node, SUV max 5.9 (CT 80).
-Retroperitoneal node, SUV max 12.4 (CT 135).
Two additional left external iliac nodes with mild tracer uptake.
No pathologically enlarged lymph nodes.
OSSEOUS STRUCTURES EVALUATION:
No suspicious bone uptake or lytic or sclerotic osseous lesions on CT.”
We thought this scan would show a whole lot of nothing since his PSA was so low, so this isn’t great news. But we knew that metastatic cancer was a forever deal, and it showing on only two spots seems like it’s better than it could be. I guess I’m looking for opinions on this scan ( difficult without current PSA, I know), and if anyone else had similar findings?
We are probably looking at pelvic radiation and one or more of the systemic options (chemo or back on adt).
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User14952
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Since I don’t know how to edit this apparently, PSA was 24 at treatment starting, not 16. It went from 16 to 24 over a 2 month period while we were told he had no mets at all based on 2 scans, then told he had 20+ mets based on the mri, then told its inconclusive and to just treat it like he does have mets.
You are not crazy, User14952. As a 49 y.o. “youngster” myself at Dx in 2016, I can say that your husband has been doing absolutely great and I understand the distress and confusion these findings can cause.
In my world, this scan summary is actually good - nothing “pathological” is called out and PSA is low enough that I have time to ponder and discuss next steps (I’m in this situation now, actually, with PSA of 2.2 up from 0.8 in March).
In your husband’s world, I know it’s a gut punch. The good news is that PSMA is very sensitive and specific, and you know exactly where your enemy is. Your husband has time for decisions. As example, I can share my current questions that I’m using in my situation:
* Is there - or should there be - a treatment action based on my PSA alone? Why?
* Is there enough scan evidence to suggest a treatment action? Why or why not?
* What is the appropriate scan interval (or PSA level trigger) for another scan if I choose to monitor? What are the scan risks?
* What are the possible quantifiable differences and similarities in my specific illness arc versus the statistics (and my care team’s experience) that can help me make a decision, including my standard-of-care options versus looking into a study (I’m actually doing this with AMG 509)?
*What is the backup plan - and the backup backup plan - if I cannot tolerate a full treatment course?
* Am I going to take Saturday or Sunday mornings as my routine “I Ain’t Ever Thinking About This Now” time (Saturdays for me)?
Exactly!...although it will likely be both. Standard-of-care is leaning towards chemo in between treatment with different hormonal therapeutics (i.e., Zytiga and Xtandi). But what type of chemo, and single chemo or chemo in tandem? Oh, boy, decisions, decisions...! I think I'll wait as long as I can!
You have no idea how much I appreciate this response. We received the results to the scan yesterday and he looked like he got hit by a truck. My (internal) reaction was different.
You are most welcome - that's why this forum exists! I find comfort here every week.
I would also recommend discussions on Provenge (See: fda.gov/vaccines-blood-biol... ... and for the advertisement: provenge.com). It's a one-time immunotherapy that works... it doesn't affect PSA and it is not otherwise "measurable", but it increases lifespan. - j
We talked to the oncologist today, and since it’s just two spots they want to do targeted radiation for now and see if it gives us more time off lupron. If and when his PSA goes up, we will do the lupron. I will remember to ask about provenge at that time too.
What great news - made my day! Even as I write that, it strikes me that only in this forum would the phrase "...targeted radiation for now..." mean great news...but it absolutely is. Hopefully your early Christmas present is a clean scan!
If he has two psma avid lymph nodes in his prior radiation fields he is probably a candidate for radioligand therapy i.e. Lu177+/-Ac225. May need to go overseas to accomplish this in a timely and economical fashion. Also he could still potentially have targeted radiation for lesions in a prior radiation field ("in-field" lesions). Would need a radiation oncologist who focuses on this and they would need access to his prior radiation treatment plans and fields.
Lutetium is not recommended if your life expectancy is longer than 10 years. I would continue with Firmagon injections. Some people live long on ADT alone.
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