clear PSMA scan but PSA still rising

[Walliam]

Hi .So my bloodstone and PSA is at 2.58 up from 1.8 over 4 months ago As I’ve said no mets complete clear scan and PET done in 2020 with PSA around 0.2 was clear but I think my PSA would have been too low to for any positive results.So my MO has told me I have ( in his words ) incurable cancer and has put me back onDecapeptyl long term and suggested I try an anti depressant tablet to help with the hot flashes .I haven’t come across that one before .He said they would try another scan in a few years ,Any answers out there to my problems I would appreciate some suggestions I feel like I’m done and dusted at this stage Thanks

T

[Tall_Allen]

There's nothing in your profile- diagnosis? treatments?

[Walliam in reply to Tall_Allen]

it’s up now

[tango65]

What was you PSA nadir after radiotherapy to the prostate? To consider recurrence the PSA should be 2 points higher than the nadir.

PSMA PET/CTs do not detect metastases smaller than 3-4 mms. "Micromets" progression may increase the PSA and eventually become visible in the PET/CTs.

[Walliam in reply to tango65]

Nadir was 0.02 at its lowest after radiotherapy but I was on ADH also .When I came off it started to rise

[Tall_Allen]

Your treatment depends on whether the spot on your rib was cancer or not. Do you know what the SUVmax was?

Venlafaxine has been found to help with hot flashes.

[Walliam in reply to Tall_Allen]

No I don’t It lit up on a PSMA scan and it was just done But it hasn’t showed on the more recent one

[Tall_Allen in reply to Walliam]

Low SUVmax rib metastases may be false positives. You may want to discuss with your oncologist before using decapeptyl.

[Walliam in reply to Tall_Allen]

But nothing showed on my second PSMA scan in February it’s completely clear My MO says it’s an incurable cancer and that 25% of people with prostate cancer are in this situation and also said I was very young to have this disease

[EdBar]

If it were me, I’d seek a second opinion from a MO that is a prostate cancer specialist not just a general MO.

Ed

[Walliam in reply to EdBar]

Unfortunately he’s a prostate cancer specialist But not a good one it seems

[KocoPr]

Also aside from the good advice above i would get a genetic test done on your tumor before any therapy to kill/shrink it. Do you know where and size of tumor? Is the spot on your rib the only one lighting up?

Your PSMA results should be on your portal so you would be able to know your SUV max etc.

Also get a germline genetic test.

[Walliam in reply to KocoPr]

My scan was clear that’s all I was told Nothing about a tumour being found but he did say there was one there but they can’t see it

[RMontana]

PSA doubling time is more important than PSA...I see your test results are 4 months apart...this podcast has set the criteria at doubling every 6 months...at that point its more of a concern than if it doubles slower...I dont know how they arrive at the conclusion that you have incurable PCa...I would get another opinion. TNX

healthunlocked.com/active-s...

[Walliam in reply to RMontana]

My MO seemed to be very lackadaisical about the whole thing and is happy to settle for ADT long term and came up with no other options.Because my PSMA scan is clear he’s sure they can’t find the cancer and has no other treatment plan for me .Then the word incurable came up .I am really considering another opinion but this guy is supposed to be top class

[RMontana in reply to Walliam]

Brother, I opted for 2 years of ADT and stopped at 15 months...if I could go back I would not have gone on ADT and just have waited for the da#n PSA to rise and deal with it...I am robed of any vicieral desire and am sick of it. I need my TET back ASAP. I will never go on ADT only treatment again. BAT for me if it comes back...I have published a lot of what we now know about TET and PCa...its not necessary to go to ZERO for testosterone! Gaurd your erectile function...as you develop the incling that you will live it will become more and more important...then many options are gone because you were killing flies with sledge hammers; works but its hard on the furniture! So, if I could go back I would not go on ADT until I absolutely had to...also, I would look for BAT treatment and have some TET flowing...take a look...Rick

healthunlocked.com/active-s...

healthunlocked.com/active-s...

healthunlocked.com/active-s...

PS fire this guy and get another Doctor...sometimes I feel about as much damage was dont to me by Doctors than by PCa...an exageration for sure, but it sure feels that way sometimes...

[Walliam in reply to RMontana]

On your PS I completely agree with you .I’ve more money spent than I’d like to remember over the last few years and I do think there’s more damage done than necessary.I’m pretty sure there isn’t BAT treatment available in Ireland but it looks very promising

[aprail]

I am in Ireland too and find it so backward .Am due to go on adt but not sure if I could find alternative.

[Walliam in reply to aprail]

Hi .How are you I’m due to go on ADT next month for what I think is Basic Indigo disease.All my treatment was done in Dublin as I thought the capital would offer me the best options I don’t think that worked out as well as I thought.There are a few other options I’m looking at like Casodex if you’re PSA is around 1 .0 I believe the side effects are minimum or Leukine . Anything to avoid ADT which I’d been on for 2years

[aprail in reply to Walliam]

Mater in Dublin has good reputation.I went to Germany for treatment.Thought no hormone after but they prescribed.Am trying to decide if I wait till MRI in 2 months to see where it is at.

[Walliam in reply to aprail]

That’s probably a good idea I’m looking into the Mater for a second opinion on my diagnosis Thanks

[aprail]

Good luck