Rising PSA with little shown on PSMA PET

[velobard]

Greetings all. I've been on this forum for years. I've only commented a handful of times, and never made a post. I prefer to usually just read from the sidelines.

First of all, a bit about my path thus far. I was diagnosed in May 2010 (age 49) (PSA 4.7 and Gleason 7), had radical surgery in July 2010 by Dr Catalona (where pathology found Gleason 9), then the first PSA six weeks post-surgery was 1.8. I followed that up with Casodex, Lupron, and radiation via Rapidarc. Jumping ahead a bit, I stayed on Lupron and Casodex (oh yeah, and Finisteride for a year or two), and that held me until 2018. I'm glad because once the ACA healthcare exchange went live I was priced out of insurance for a few years. I was able to get my Lupron injections, Casodex script, and PSA tests handled at the community health clinic.

My PSA numbers always stayed fairly low, but by summer 2018 they doubled and doubled again (peaking at 16.7) within several weeks and got a referral to an oncologist. I had tried to find an oncologist, but when the ACA went live both my medical and radiation oncologist suddenly decided to take early retirement, both insisting it had nothing to do with the exchange. Whatever, but it sure seemed like a bit more than a coincidence. I searched around several times and couldn't find an oncologist within 50 miles accepting new patients. Weird. Thankfully the referral from the community clinic together with my numbers got me in the door where I still am today. The new doc took me off Casodex and put me on docetaxel x6, which was a bear but I got through it. My PSA came down to, IIRC, 0.42. I wrapped up chemo in Nov 2018 and that held well enough until the beginning of 2020, when he put me on Nubeqa. That took my PSA down to what I considered an impressive 0.04.

In 2022 I asked about the possibility of radiation to zap the 3 lymph nodes that were the only places scans ever showed any hits, and they gave me a referral. I believe I got 5 rounds that time around. Shortly after I also asked about the possibility of switching from Lupron to Orgovyx, which he did. I was his first patient ever to use Orgovyx.

Jumping ahead again, the numbers crept pretty slowly, then 3 months ago I was at 0.29 and this month tested at 0.45. Whoops! Yeah the number is still low, but I don't like seeing 50% jump in just 3 months! So I went in for a scan and the report said the previous nodes were now clear, but:

"There is a 5 mm node to the right of the IVC at the level of the aortic bifurcation which is PET positive, maximum SUV 5.4 on image 232, most likely metastatic disease. On image 243, adjacent to the right common iliac vasculature, there are at least two and possibly three small PET positive nodes, all measuring 5 mm or less in diameter, maximum SUV of 6.6 on image 243, consistent with metastatic disease. "

OK, so the three previous nodes were good, but there were 3 or 4 small new ones. But when we saw the oncologist a couple days ago he showed us the scans on his computer and those new spots barely lit up at all, very faint. He said radiation wouldn't have much of a target so that wouldn't help. Chemo, either docetaxel or cabazitaxel probably aren't a good idea at this point, with little to gain, but full side effects of course. So the good news is the scan isn't so bad, but the bad news is the PSA is rising. He said it's time to wait and see where it goes. I have a regular follow-up scheduled with the radiation oncologist later this year.

I am currently 63 and at this point, I'm tired. No longer working, I went on SSDI when I finished chemo in 2018. Any advice or thoughts?

[NanoMRI]

After my salvage RT and subsequent imaging, I went after identified pelvic nodes with salvage extended pelvic lymph node surgery using the frozen section pathology method. Six of thirty-one nodes confirmed cancerous, including common iliac and para-aortic. Over six years later, usPSA holding 0.03X range, no ADT.

I carry on with annual PSMA imaging and this upcoming series will include fluciclovine PET and mpMRI for comparisons. My intent is to not give this beast time and obscurity.

Hope this helps. All the best!

[dhccpa in reply to NanoMRI]

Is the fluciclovine PET and FDG PET? I get mixed up on the choices. I've had one PET Bone Scan in 2018 and 4 Axumin PETs since then.

[NanoMRI in reply to dhccpa]

Different as I understand. I find it all a bit confusing too, and hear/read varying medical opinions on which is 'better'. Raymond at UCLA and Kwon at Mayo recommend trying different imaging methods to see which one may identify mets. It is logical, the higher the PSA, the likely more cancer, thereby seems likely more 'successful' imaging might be.

As I have learned to not give this beast time and obscurity, I am now imaging at 0.030 - based on European experiences. I have had two Ga 68 and one Pylarify - all three clear. For my next upcoming round going to do the Fluciclovine F18/ Axumin for comparison and mpMRI.

In 2018, in Netherlands, at usPSA 0.11, I had the Ferrotran nano-MRI and Ga68 PSMA. While the Ga68 was clear the nanoMRI identified five suspicious pelvic lymph nodes; six cancerous nodes confirmed by ePLND surgery.

This is one example of available imaging methods and one of the ranking examples:

— F18-DCFPyL/Pylarify

— Ga68-PSMA-11

— Fluciclovine F18/ Axumin

— C11-Choline/ C-11-Acetate

— F18-Choline

— NaF18

— F18-FDG

[Wagon-Wheel in reply to NanoMRI]

Will PSMA imaging show anything with PSA at 0.03?

[NanoMRI in reply to Wagon-Wheel]

yes, this is the question with all imaging. I learned seven years ago that in Europe PSMA imaging begins at 0.03. Well recognized chances are lower than with higher PSA values but they do have success - and this is very valuable for the men who experience this. An equal question is, is one's prostate cancer PSMA avid. Some centers I now being aggressive with different types of imaging at these lower PSA values to hopefully identify mets. I image at this lower values to do my best to stay ahead of this beast, not giving it time and obscurity.

[Fortran1958]

I am in a similar position to you, although only treatment so far has been RALP in 2015. PSA climbed slowly to 0.2 at 6 years post op. Over the course of the following year I had 5 PSMA PET scans with nothing definitive.

My urologist wants to wait until I hit 0.6 before next PSMA. Last PSA was 0.51 at 8.5 years post op. My PSA climb has been a slow trajectory, so I suspect I will hit 0.6 at the end of the year.

I am 65.

[dhccpa]

Why were you on finasteride? I'm vague on that drug. Thanks.

[velobard in reply to dhccpa]

Ya know, I'm really not sure. That was right at the beginning of my treatment after surgery and my head was still spinning and I had enough other treatments going on that I didn't question the oncologist's request for me to take that specific pill. I wasn't on it all that long and haven't worried about it again. Sorry I'm not any help with your question.

[dhccpa in reply to velobard]

Thanks. Urinary issues with BPH, possibly?

[velobard in reply to dhccpa]

I wasn't having much trouble with that at the time. If it was for that I would have expected it to have been prescribed by my radiation oncologist, but it was from my MO.

[j-o-h-n]

Helpful hint?

Why not copy you post above and paste it in your bio. Would be helpful to you and to members.

On this Memorial day, I honor and mourn all those who proudly served our country.

Good Luck, Good Health and Good Humor.

j-o-h-n

[SeattleDan]

My history is also somewhat similar (see profile) but with you there are a couple things I’m not clear about: did you get the new mets while you remained on continual Orgovyx or after taking a ‘vacation’? And were you ONLY on Orgovyx or were you on a ‘doublet’ therapy like me?

[velobard in reply to SeattleDan]

The PSA increased after I switched from Lupron to Orgovyx, though not right away. I have been on Nubeqa with one or the other of those since early 2020. I haven't had a vacation since very early in my cancer journey, in the first year or so. I finally conceded that Lupron (and now Orgovyx) would be part of my life forever.

I just checked my portal, I didn't start Orgovyx until the first week of Nov 2023. Like I said earlier, my oncologist doesn't have much experience with it. I was his first patient to receive it, at my request, and I don't know whether or not he has since prescribed it for anyone else.

[God_Loves_Me]

I was reading about a similar post. It is one of the risks I noted down for my treatment plan. If anything does not show up on PSMA, it means the times for the FDG scan may show up as something more than PSMA, which I mean non-PSMA. I plan to convince my doctor to do an FDG scan.

Also, it is important to find systemic therapy and not wait for any targeted PSA numbers

[velobard in reply to God_Loves_Me]

I wonder if an FDG scan is even available at my hospital. What exactly does it show that PSMA does not?

[God_Loves_Me in reply to velobard]

Ya, FDG will show more that PSMA does not show. It full body scan.

[robert570]

Just like you, I'm on my10th Year now. I have had so many different treatments, too many to list. I'm currently on Jevtana and carboplatin. I was on Jevtana for about 13 rounds in 2023 and my PSA was stable around 2.8 They decided to give Pluvicto a try. After the 3 round it shot up to 10 and I told them to stop. As stated earlier, I'm back on Jevtana with the addition of carboplatin now. Just had the 1st round about 2 weeks ago with the carboplatin added on. My PSA has shot up to 62. The major problem now is radiation cystitis flaring up. I have been bleeding since January off and on. That has made me ineligible for for some current clinical trials. More scans are coming. I have bone Mets in various places, but the organs are all clear. Stage 4 Gleason score of 9 for 10 years. Here's to another 10.

[Wagon-Wheel in reply to robert570]

Hyperbaric treatments stopped my bleeding. My insurance paid for 40 sessions.

[God_Loves_Me in reply to Wagon-Wheel]

how about dendritic cells ? Search in this group there is one comment he confirmed that it shrinks or removes 30 tumors in 6 months

Search keyword dendritic cells

[robert570 in reply to Wagon-Wheel]

My urologist has brought that up. How long were your sessions?

[Wagon-Wheel in reply to robert570]

My sessions were 2 hours each and a total of 40 sessions. Treatment is easy after you equalize pressure.

[Still_in_shock]

"He said radiation wouldn't have much of a target so that wouldn't help."

I have an issue with his statement. If you can see it on a PSMA, you can use that as an overlay to your radiation CT simulation.

[velobard in reply to Still_in_shock]

Yeah, I'll address that with my RO but I won't see him until this fall.