Hello - I m new here - any advice/thoughts would be appreciated - age 67, diagnosed at 65. Pretty healthy guy, with this exception.
RP 2/17 in NYC - PSA after that was detectable, so off to Sloan - thank god they are close.
GS - 9 ( regional )
All scans clean
Started salvage radiation treatment - 5/2017 - PSA 1.23 in NYC
Also Lupron - 1 shot 5/2/2015
T Levels at the start was 503 ( before Lupron )
After 1 month on Lupron, T level was 21 ( WOW - what a hit ) - stayed at the level for the year while on that medication.
40 RT ( IMRT ) treatments, that began on 9/18 ( at Sloan )
1 month later ( June 2017 ) PSA was undetectable and stayed there for 1 yr
Just had 1st follow up since 5/2018 ( 6 months from the last PSA and T levels tests )
NOW 12/17/2018
T - Level now is - 421 !!!
PSA is 0.19
Thoughts, comments would be appreciated.
I would hate ( but would ) take another hit on Lupron or Casodex, but would that be overtreatment - I can't drive myself crazy and I would living from blood test to blood test every 6 months -- I have to at least consider QOL.
DR has me scheduled for f/u in 6 months - but has yet to see current labs.
Thanks, Ed
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ken12491
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This isn't something a doctor would be interested in, but I would want to know my estradiol [E2] level. (it should be 20-30 pg/mL).
With T at 421 ng/dL (<350 is hypogonadol), there is the possibility of estradiol dominance. Some would say so what?, but I believe the E2:T ratio is significant.
I can only say that I have been on continuous Lupron for 19 years and PSA is .17 after all this time. I do have fatigue but otherwise a pretty enviable life.
Thanks for your feedback - what was your primary treatment, surgery, radiation, etc ---- wow that's a long time to be on lupron --- did they give u many ' vacations ' from it.
Did u gain a lot of weight --- I did, lost since being my last 3 mon shot in May 2018...
Also Lupron - 1 shot 5/2/2015... stayed at the level for the year while on that medication...
40 RT ( IMRT ) treatments, that began on 9/18 ( at Sloan )"
So you meant that you had Lupron starting on 5/2/2018, right? And to stay on it a year, you cannot only have had 1 shot, as you say. and did you have TWO salvage radiation treatments - one starting 5/2017 and the other starting 9/18? Did you have ADT with both salvage radiation treatments, and for what duration?
Had IMRT ( 40 ) at Sloan that started in Sept 2017.
Had several Lupron shots, may have had 5 in total over the year.
The shots and perhaps the IMRT kept me at a non-detectable level for the entire yr.
PSA on 5/2018 again non-detectable.
Had only ONE Salvage Radiation treatment of 40 treatment, they began on 11/6/2017 - call u have more than one?
Just had my first follow up follow up since 5/2018 on 12/17/18
PSA is now .19 on 12/17/18
T Level is now 421.
Dr now wants another PSA test on 1/7/19 based on the .19 PSA taken on 12/17/18
I see more tests, possible ADT and not sure how much more testing I can go thru
Interesting nonograms from SMK --- they say:
' Post-Radical Proctectomy '
I plug in all my #s and it says, without any other treatment then the RP I would have a
15 yr survival rate of 64%!! --- and since I had ADT and IMRT it would probably be higher - if that tool is close to being accurate - I would take those odds.
Another tool from Sloan:
' Male Life Expectancy survey '
Again, I plug my #s in and the tool says - without any 'curative treatment' at all, results would be:
15 survival rate would be - 64% !!
You seem to be very knowledgeable - thoughts, suggestions, ideas are welcomed.
Wrote a similar note to my uro, said all great points and is calling later today
What you wrote is still not quite right, but it's close enough to give a picture. You wrote:
"Had IMRT ( 40 ) at Sloan that started in Sept 2017....Had only ONE Salvage Radiation treatment of 40 treatment, they began on 11/6/2017 - call u have more than one?"
So whether your salvage radiation began in Sept or November doesn't matter, but it seems you only had one - yes, you can have more than one if they are in different areas. You don't specify which area was treated -- if it was prostate bed, and the PSA is only from pelvic LNs, you can still have your pelvic LNs treated. You also don't mention your post-RP pathology (Gleason score, positive margins, EPE, SVI) - I assume it was adverse if you got a year of Lupron with it. And if so, they probably already treated your pelvic LNs. If that's the case, hormone therapy may prolong your life.
Thanks but my is regional - I did talk to a MO about Zytiga but I was not a good candidate since it was regional. Are the MO now adding that even when it's not yet metastatic for a ' curative ' approach?
when u say ' Pet Scan may see where the PCa is Hanging out ' doesn't it go most times 80% to the bones - my PET scan in Sept 2017, was totally clean -- is it possible that the PC could have metastasized to other soft tissue that fast? I'm not even ( but very close to BCR ) but were could it be hanging out? Nodes were RT to the fullest degree I believe.
I was under the impression that mean time from BCR failure to metastasis is about 6 or 7 yrs.
This stinks, we all have clouds over our heads but at some point, and to save QOL, I might turn this over to Gods hands. I don't like it but do accept my mortality.
I honestly believe PC never really goes away for good - meet a guy during RT that was nadir for 10 yrs, then PSA showed up - was sent off to have RT.
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