Almost got away with it

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Just as I was settling into thinking that I may have miraculously escaped, the sniper got me from a distance of 2 years.

I had reckoned that the longer I could run, the less chance of being hit and at 18 months post op I was still PSA <0.025.

I had a pretty easy recovery, continent after a couple of months, increasing success with ‘the pump’ and just pootling along enjoying life like before.

But today my 2 years post op test was 0.035, a small rise, but a rise nonetheless.

I absolutely realise that I’ve been lucky to get this far as my biopsy score of 4+3 was increased by histology to 4+4 (GG4), pT3b NO (0/2) small positive margins (1mm left apex), lymph glands clear.

I am still confident that the robotic prostatectomy was the right choice for me at the time, so no regrets there.

I understand that I will continue PSA tests and after a third rise or if I get to a result of .1 I will have salvage radiotherapy to the prostate bed or I can wait until .5 and have a PET scan.

Hopefully that choice will be a while off and on a positive note, I will still be on a ‘curative pathway’ - one of Millibobs favourites :)

Now the news has had a few hours to sink in, perversely I almost feel a sense of relief - I definitely had a sense of survivors guilt so I can say goodbye to that :)

So here I am, back in the club - not that I ever really left as I check in most days to see how we’re all doing.

Counting my many blessings as I know things could be so much worse.

Millibob 1 month ago

Hello Amnesiac

I would have said "welcome back" but as you have been "lurking" - oh sod it - welcome back anyway. .

You have done well, great recovery and 2 years post surgery and the PSA is only a "small rise" so your team are on the case.

Yes a "curative pathway" - carry on enjoying life - don't worry about the PSA tests and if it comes to it Radiotherapy is a "walk in the park".

Good luck going forward and do keep us posted.

Kind regards - Brian.

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Amnesiac 1 month ago in reply to Millibob

Thanks Brian. You and many other members were really helpful to me when I was first diagnosed. I’d say Good to be back, but ………

Carl28 1 month ago

Hi, although different details (I had EBRT and HT and the time lag to recurrence longer), FWIW my experience suggests that you try and get a PSMA PET as soon as possible.

Good luck, Dave

Amnesiac 1 month ago in reply to Carl28

Thanks Dave. I’m led to believe that a Pet scan will only really show an obvious target area if the PSA is much higher than I currently have. I would be more than happy to pay for a private scan as NHS reckon .5 is the level they have a chance of ‘seeing’ a tumor to zap. Very happy to be educated via your experience.

Sight for sore eyes 1 month ago in reply to Amnesiac

Hi A, My consultant was of the view that below 0.2 there was 20% chance of detecting anything even with PSMA. Doctors differ etc. S

Carl28 1 month ago in reply to Amnesiac

Well, yes, probably too early yet, but certainly once over 0.2 in my NON-MEDICALLY QUALIFIED OPNION.

PSA 0.2–0.5 ng/mL: is .......a standard point to consider a scan.

Good luck, Dave

Millibob 1 month ago in reply to Sight for sore eyes

Hello Sight for sore eyes

I agree with you there. My team have said the same 0.2 is 20% chance of finding anything rising to !00% when the PSA is 2.00.

Oh the cost now of around £3000 for each scan to the NHS would never influence their use of a PSMA-PET scan would it?

Best wishes - Brian.

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