I don't know the answer to it, but I'm hoping BonzoDog will come along and help. He might.
What does the doctor say?
I'm sorry this is happening. I'm sure it's very scary.
Thx for pointing this in my direction, auntiejessi. As some frequent readers here know, I’m a prostate cancer survivor myself, surgery in July 2018, PSA never dropped below ‘undetectable’ & still battling metastases in the Lymph nodes, just started 2nd round of hormone therapy, which drops Testosterone down to near Zero to slow spread of the cancer, which thrives on Androgens such as ‘T’…
Anyway, to your question: Yes, a rising PSA indicates there is still some prostate cancer present somewhere. The big mystery with this is, we know from the PSA level it’s somewhere, but WHERE? Obviously he’s had the Axumin scan, a very sensitive PET/CT scan that can sometimes detect small amounts of prostate cancer cells & show where they are. However, statement #2. (No Axumin-avid…) means the Axumin scan did not detect cancer. Now you might think that’s good news, but all it means is there’s almost certainly cancer present, but it’s likely in very tiny pockets of cells spread around (most likely in the lymph nodes) that are just too small to be detected even by this very sensitive scan.
But there’s another even more sensitive type of scan called ‘PSMA’, it not easy to find hospitals who do this, it’s still quite new, I’m not even sure if it’s FDA-approved yet. However, he can sign up to get it done as a clinical trial. I had it done out at UCLA back in 2019 as part of a clinical trial - I live in the Chicago area & thought it was worth a flight out there, stayed 3 days, got the scan done & visited a couple of friends while there. He should ask his Dr. about getting a PSMA scan - at a PSA of 4, there’s prbly about a 90% chance it would detect & pinpoint the location of the cancer. So for example, if the scan revealed several lymph nodes w/ cancer, he could have either radiation to those areas, or in some cases, they could be surgically removed. Just keep in mind that most likely, even removing these small areas of cancer might not be the end of the story - there are likely still other areas of minute amounts that escape detection, and those will eventually cause problems & continue to spread.
I’m sorry your husband is dealing with this - I’m very well aware myself how frustrating this disease is. He’ll prbly end up having to go on hormone therapy to keep the cancer at bay. It doesn’t kill the cancer, it just makes it kind of ‘dormant’ & slows the spread, but can keep men alive for many yrs. The big issue is preventing it from spreading into the bones. There may be some new treatments coming in the next couple of yrs that would be more on the ‘curative’ side, so delaying the spread is worth doing until these more ‘curative’ therapies become available.
As auntiejessi said, I’m sure his Dr can also explain the exact implications of these medical results, so have a good discussion with him or her…
Best of luck to him battling this frustrating issue - I’ll say a prayer for him, a fellow traveler on this unfortunate path…
Bonzo - helpful, as always.
The only thing I can add is to not get discouraged. My dad never had a 0 PSA, either, and had an aggressive form of PC. He was told he had a 5 year survival of about 15%, and lived 12 years. He might have lived longer, but had other complications and was in his 80s when he passed.
There is absolutely hope.
This is a great point - my PSA had risen to around 100 before I finally gave in & submitted to hormone therapy, yet I was still not experiencing any symptoms. I still had & have some complications from the surgery, but I’m not in any immediate danger. I participate in a prostate cancer support group (UsTOO) & one of the leaders has very advanced cancer that hadn’t responded to most treatments, but he’s still alive & doing well 14 yrs later. I’m pretty sure no Doctors thought he’d still be doing reasonably well this many yrs later, given the aggressiveness of his disease. And now there are new drugs & treatments expected to become available in the next few yrs that could actually present the possibility of a cure, rather than just delaying progression. Thx for that input, auntiejessi!