Should I be worrying about nothing happening?

[Birdwood]

History: DRE Dec2013, PSA 5.1 Biopsy Dec2013. Age now 74.

Biopsy summary: Adenocarcinoma. 5+4=9 in 4 cores with several perineural permeation, 4+3=7 in 3 cores with pp, 3+4=7 in 2 cores with pp, 4+4=8 in 1 core, 6 cores were clear. Overall Gleason (4+5) G9 T3b. Many cores had 80-95% tumour. Scans did not reveal any lymph node or skeletal involvement.

Commenced cyproterone acetate Jan2014 for 11 weeks.

Commenced Lupron Feb2014 finished Feb2017 (3 years)

Commenced radiation Mar2014 finished May2014 (78gray). Opted for RT not RP.

PSA 5.1 Dec2013, 1.0 May2014, 0.1 Oct2014, 0.07 Feb&Aug2015, 0.05 Nov2015, <0.03 Aug & Nov2016, 0.03 Feb&May&Aug&Nov2017, 0.06 Feb2018, 0.11 Nov2018, 0.13 Feb2019. Nadir about 30 mth after starting Lupron.

ALP is within desirable range. Testosterone 0.5 nmol/L Nov2015 and Nov2016.

My worry is in the accumulation of all the bad indicators i.e. it is now 5.3 years since DRE, 2 years since Lupron finished, 4.75 years since Radiation finished and psa is moving extremely slowly. I am G9 some cores were 80-95% which implies PC cells have been floating around the body for years prior to Dx.

My urologist says to wait until psa approaches 2.0 then do scans. Probable first treatment will be intermittent Lupron. We recently had a chat about neuroendocrine PC but he added they tested for it at biopsy and another test is not necessary.

Should I be worried about lack of action by urologist and the continued low psa?

Thanks

Ettalong

[Tall_Allen]

Neuroendocrine? Why would you be worried about that?

[Birdwood]

Many thanks Nalakrats and Tall Allen. You both (and this site) are greatly appreciated even 'down under'. Considering the heart-breaking severity of many of the blogs, I was very hesitant to write mine. But the comments do give some relief. Thanks

[Crabcrushe]

I thought this was a gag post.

"No worries, mate." , good news, bad news or no news is the best mindset, IMHO. In your chair, I'd celebrate, kick back, and study the enemy.

God bless you.

Crabcrusher

[Birdwood in reply to Crabcrushe]

Not a gag. I have read here of so many high gleason-low psa disasters and of poor judgements of urologists that I thought I'd better get a '2nd opinion'. Cheers

[Shooter1]

5 years and those low numbers, sounds great to me. Hope I can do as well.

[j-o-h-n]

Bird, if you can still get wood, then go sic em. FOR ALL OF US.

Good Luck, Good Health and Good Humor.

J-o-h-n Tuesday 03/12/2019 10:06 PM DST