Getting Slightly Concerned

[Benkaymel]

In November having been on ADT for 4 months and Xtandi for just 1 month, things were looking pretty good – PSA dropped from 13 at dx to 0.33 (although I was getting a little more pain from some bone mets). Then with December’s blood test, PSA has stalled at 0.34 and the bone pain continues to increase if anything. Also, the CT scan in December showed no improvement from the August scan, in fact, the lymph node one has grown from 14 to 21mm. Surely I’m not becoming hormone resistant so soon!

My MO has consulted with others and is now recommending a PSMA-PET scan plus radiation to the most painful bone met on my ribs followed by likely RT to the pelvic area.

I have read that a PSMA-PET scan is not very useful at low PSA levels such as 0.3 – is this true?

[GP24]

If the PSA value is suppressed by ADT, there will probably be enough PSMA expression for a PSMA PET/CT. Xtandi can increase the PSMA expression too.

[Benkaymel in reply to GP24]

Thanks GP24.

[Benkaymel]

Thanks Russ

[Benkaymel]

Of course insurance isn't the issue on the NHS but there are many limitations in what they will provide, So if your PSA was only 0.02 at the time of the scan, I assume it didn't pick much up?

[anony2020]

Didnt they approve triplet recently?

[Benkaymel in reply to anony2020]

It wasn't available when I started treatment. It's been approved now but not all NHS trusts have started it yet. Since I'm no longer de novo, I don't know if I've missed the boat on that anyway?

[anony2020 in reply to Benkaymel]

Dont know the answer either, but you can ask?

[Benkaymel]

Good to hear. I fear mine will pick up quite a lot ☹️

[Tall_Allen]

It's generally true, but the exception is when metastases are rapidly growing. The fact that your lymph node met isn't putting out the expected amount of PSA for its size might be because its not from cancer (lymph nodes also increase in size due to nearby infection) or it's a low PSA type of prostate cancer. You may want to request a biopsy of it.

[Benkaymel in reply to Tall_Allen]

Thanks Allen.

[Mrtroxely]

I've been asking for germline gene tests, and pmsa pet scan.

How do we and others know if any treatment works without baselines or begining full idea of problem????

Nhs oncologist, we just use PSA???

My results

Chemo 1 #0.05, chemo 2 #0.076, chemo 3#0.09, 4# 0.11, 5#0.21.......

I asked whys score going up when I'm actually on a cancer killing treatment......

And answer

We not worried till PSA gets to 2.....

Nhs.

So, my thoughts is if you can get any tests to give you the best picture of your cancer and give you a fighting chance, then go for it.

I'm starting to just accept a shitty level of information

[Benkaymel in reply to Mrtroxely]

I agree that you feel like just a statistic with the NHS and don't get proper personal attention. However, it seems a bit better now they are doing the PSMA-PET scan and giving me RT to the painful bone mets.

[Seasid in reply to Mrtroxely]

I am just curious. Why did you start chemo at psa 0.05?

Was it an early chemotherapy?

Did your cancer growth rapidly despite very very low PSA?

I always thought that chemotherapy is only useful if the cancer is rapidly growing?

[Mrtroxely in reply to Seasid]

I'm curious as well...Oncologist says from research.

Having chemotherapy with Gleason 9 advanced prostate cancer was seen to help

My final chemo 6 of 6 was 5 days ago.

I'm feeling fairly crap!!!

And PSA gone up to 0.21 last blood test.

She recommended radio therapy next in march??? 6 sessions to prostate....

Will it do anything? She don't know

Has chemo done anything? She don't know?

But I either do the chemo or don't??

Or do the radio or do t??

No more treatments on offer at mo.

I tried enzalutamide before instead of chemo!!!

That was grim, I lasted 2.5weeks...

[Shamrock46]

Don't blame you for being concerned. After being on Lupron/Xtandi for about 18 mos. my husband's PSA had been mostly undetectable. The last May it went up to .01, July .04, August .08, October .27 and last week .52. He's suffered through many SEs including minor memory issues recently (MO says from Lupron). We meet w/her next week. I can't see continuing the regimen with the SEs if the meds have become ineffective, especially since I'm greatly concerned with memory now being affected. Good luck.

[Benkaymel in reply to Shamrock46]

Thanks Shamrock, sorry to hear your husband's treatment is failing already and the SEs. Hope he finds something new that's effective.

[Shamrock46 in reply to Benkaymel]

Thank you. He was originally dx in 2014 & had robotic surgery with dr. saying "nothing to worry about...I got it all." Paid $250 for hospital records after recurrence in late 2018... evidence of PNI/margin problems we were never told about. Changed drs./hospital and started Lupron 2019, Xtandi in 2020. It's been a difficult journey as many know. Multiple SEs and other problems have turned him off to chemo, radiation, bisphosphonates and more surgery and other meds appear to have more complications for his cardiac issues.

[gsun]

I understand some doctors are doing PSMA scans at .2.