PSMA scan for PSA of 0.023?

Four and a bit years since my prostatectomy.  Two and a half since salvage radiotherapy.  One and a half since finishing bicalutimide.  Another PSA test result today.   Still less than 0.006.  Another test in 12 months.  

The doctors have done a good job on me.

Penile implant surgery indefinitely delayed owing to Covid - 19.  I’ll keep you all updated.

Thanks for all the support over the years.  Much love to all as we continue this battle.

Two years ago, on 8th November 2016, my PCa was confirmed.  Today, I’m writing to you all from Antarctica.  It was always a dream of mine to get here.  I don’t know what the future holds, but today is a good day.  The scenery is stunning.  I’m happy.

Ulsterman

Three more months have passed and my latest PSA is <0.006.  Great news.

I asked my oncologist if I was in remission.  I was told that remission is one of two things - we know there are cancer cells there, they’re doing nothing at the moment so we don’t need to treat now, but we will do in the future - or, we strongly suspect there are cancer cells there but can’t detect them at the moment but do believe you’ll need future treatment.

He told me I was either in remission but there was a good chance of a ‘cure’ but made it very clear they wouldn’t consider using that word for ten years.  He told me that after everything I’d been through, I was in the best possible place.  I tend to agree.  My urologist and oncologist have done miraculously well so far.

One other piece of news - I’ve been approved for the penile implant.  Waiting list times will have changed because of Covid 19, but at least I’m approved.  My local hospital doesn’t do the operation, I’ll be off to UCLH, which I’m very happy about.

Ulsterman

It is possible that from what your oncologist is suggesting, that your individual circumstances suggest that a 68 Gallium PSMA scan might reveal cancer in your case notwithstanding your lowish PSA. From what I have read a more usual starting point is 0.05 for this scan for patients with similar situations to yours but due to rarity and lack of experience of the scan oncologists are very much on a learning curve of just what it can show.

As regards the cost of this scan privately, as I reported on another thread in November last, having enquired of UCLH, the figure they gave was £2,200. The Royal Marsden quoted £3,700 plus a fee for their interpreting if required. There are a number of facilities who could do the scan in Europe and prices will vary. £3,000 would not be far out for Germany. A member located in Australia on another forum said the scan could be had in Melbourn Australia for Aus$800 and for a little more or less in other parts of Australia. So, for the price of this scan in Europe you could have it, including the air fare and a few days in the sun! If you think the OZ figure is wrong, read this :- https://www.huffingtonpost.com/larry-diller/fly-to-australia-for-to-s_b_12807018.html

Yes I am odd. It’s always been said. I think the data PCUK sent me says it cannot “ pick up “ on 8% of subjects. I always knew I’d be good at something :-)

They will blast the whole prostate bed and the lymph nodes. I don't know if this is the standard treatment, but my oncologist does 32 days of radiotherapy to the prostate bed, or 37 if she wants to go further up the prostate bed to include lymph nodes. She doesn't like doing the 37 day treatment unless she knows for certain it is needed as there are more risks of later complications, I think in the bladder. At my January appointment, I told her I wanted the 37 days regardless and she said she would consider it. Now we have the evidence it is needed. Without the PSMA scan though, I might have had the 32 day treatment and left the cancer in the lymph nodes totally untouched. She said there's no way the Choline scan would have picked things up. Hope that all makes sense.

I had a few lymph nodes removed during surgery and so, inevitably, am wondering why they didn't remove these two. Maybe that's not standard practice. I'm not blaming my urologist, but just wonder what would have happened if he had removed them.

I'm so sorry they haven't found where your cancer is hiding and I hope the March scans finally find out what is going on.

Ulsterman

Thanks, everyone, for your best wishes

Chris - I hope your cruise is brilliant 

Kayaker Bill - I’ll keep everyone informed on how things go, post-bicalutimide - I’ve had nearly every side effect of the treatment and desperately hope to see an improvement in quality of life once I stop it

I am feeling healthy and not as tired as I was, but that might be because of not working as much during lockdown