Spread with an undetectable PSA?

Let me throw in my twopenth regarding scans. My husband is currently having chemo and last week I asked his consultant oncologist if he would have a scan after his treatment ended and his reply was no, so I asked why. His response was that they don't do further scans (prostrate cancer is just about the only cancer where they don't scan) and the reason is because once diagnosed then the PSA is so accurate. What I will be asking next time is why does the PDA suddenly become so accurate once diagnosed when so much research and evidence says a PSA can be so inaccurate. I will also ask why it appears some men have scans in different hospitals and the one we are under dosent. I doubt he will be happy with me questioning him but tough. Also have a telephone consultation with the oncolgy nurse in a few days so will ask her. My understanding is that the hormone treatment reduces the PSA so how does this fit with knowing what the cancer is spread is doing. 

Hello Shar, brilliant questions to ask. It would be great if you could share the answers!  As for the oncologist not being happy - well as you say- tough! It is our responsibility to question on our husbands behalf if they are unable to do so themselves! ‘Good on yer - as they say where I live!

• Worried wife, I will definitely keep everyone up to date on his response 

Interesting point. Don't forget though that PSA was originally for testing specifically for recurrence of the cancer and think I agree scans not usually needed.

Only exception is that with some aggressive PC's PSA doesn't rise or very little  even if spreading, although I believe these are quite rare.

So if u get the chance to ask about that particular situation would be worth knowing their answer

Steve 

I absolutely agree with you. We were  definitely told on diagnosis that they wouldn’t be relying on PSA in his case and would be scanning, this all changed at the end of treatment to relying on PSA, so confusing and worrying. x

Hi Jnc.

My husband is also T4, Gleason 9, Grade Group 5, non secreting PSA. He was diagnosed July 2020 when the primary mass had erupted out of the prostate capsule but with a secondary visceral mass in the upper abdomen as well as multiple lymph nodes. Initial prognosis was 6 months as the PCa was rare, very aggressive and extensive. He has had 3 monthly MRIs (upper and lower abdomen) since then as we were told we could not rely on the PSA. 33 sessions of EBRT sorted out the lower abdominal mass and lymph nodes. Prostap implant every 12 weeks plus Bicalutamide kept the upper mass under control for 18 months but MRI indicated that it was becoming castrate resistant as it was getting bigger. Enzalutamide then shrunk this mass to fibrous over the next 18 months. In July 2023 the MRI indicated that the lymph nodes were beginning to get a little larger so hubby had a PSMA PET scan which lit up like a Christmas tree in the upper abdomen lymph nodes so docetaxel chemotherapy started immediately. Fortunately no further mets showed up. After 3 cycles MRI showed reduction in lymph nodes. He has now completed 6 cycles and is due to have upper and lower abdomen MRI'S plus chest CT scan in three weeks followed by a consultation with the Greek God for a full review of where we go from here. Shar and WW we will not say anything about the Greek God to save Millibob's sensibilities. In all this time the PSA has remained very low but any slight increase from the nadir after radiotherapy has prompted further investigation.

WW Multiple MRI's and CT scans have been carried out without contrast because our diagnostic centre will not use them if the creatinine is above 1.3. My husband has CKF as a result of the initial mass obstructing the ureters causing some kidney necrosis so contrast is not possible in his case, although I believe that the latest generation of contrasts have less effect on the kidneys. The scans can be interpreted with no problems, it's just that it is not quite as easy as with contrast 

From an initial poor prognosis where they weren't sure they could control the cancer we are now in a position of discussing possible future treatments. How things have progressed in the medical field in such a short period of time. In order to get the more expensive treatments we have to prove to the Greek health authorities that we have a good quality of life, in other words that we are doing our bit and not just relying on the drugs. This journey has taught us that life is precious and can still be good. We just take each day as it comes and are determined to enjoy whatever time we have left together.

Jnc hopefully the MRI will give you the answers to your husband's lower back pain. My husband swears by his osteopath and always comes back from his three weekly sessions with a big smile on his face and is a lot freer in his movements and with less pain, but then who wouldn't when they have had an attractive young lady put her hands on you for an hour.

I think that for those who have non secreting PSA PCa then you just have to keep reminding the medical team that it is atypical and may not conform to the normal criteria so for your own peace of mind can they please arrange for scans. Stick to your guns Shar and Jnc.

Hi Alwayshope

Your following paragraph helped me:  

"WW Multiple MRI's and CT scans have been carried out without contrast because our diagnostic centre will not use them if the creatinine is above 1.3. My husband has CKF as a result of the initial mass obstructing the ureters causing some kidney necrosis so contrast is not possible in his case, although I believe that the latest generation of contrasts have less effect on the kidneys. The scans can be interpreted with no problems, it's just that it is not quite as easy as with contrast".

I had been wrestling with not taking contrast ie gadolinium for my upcoming MRI.  My serum creatinine is 1.36.  After much research, and although concerned about omitting it, I decided against the contrast.  However, I had no anecdotal examples until your one.  It helped reinforce my decision, particularly where you said "The scans can be interpreted with no problems".

Thanks

D