Hmm… So my great MSK Docs (and they ... - Advanced Prostate...

Advanced Prostate Cancer

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Hmm… So my great MSK Docs (and they are great) tell me I’m cured...

westof profile image

So, why am I inclined to be a Doubting Thomas, Skeptic, Unsure, Mildly Concerned and Quasi relieved?

I've never consulted with a "shrink".🤔

About time?😕

Best

41 Replies

Well " i need a mracle".....looks like you got a ticket outa here....but keep your wrist band for re-entry.....peace...

westof profile image
westof in reply to Boywonder56

Duly noted, BW

Thanks

I’ll never forget your legendary GD story where you bought pigpen a drink between sets. Congrats & happy trails!

westof profile image
westof in reply to StayPositive1

Wow, I forgot that I ever mentioned that episode of my life on the Forum!

Guessing I've had too many 🍻 and other stuff...

You have a GREAT memory!

Thanks!

Boywonder56 profile image
Boywonder56 in reply to westof

Dancing bears the give away too ....

Congratulations!! It is fantastic. Did you ever have evidence of distant metastases?

westof profile image
westof in reply to tango65

Hmm... Funny you should mention that.

Last Sunday I emailed my MO:

"Hey Doc,

I still spend much time on the APC site advising others, however, only as it relates to my own experience.

One member suggested that I might want want to consider a PSMA PET scan to look for distant mets.

Thoughts?

Many thanks,

AJ"

He replied (5 hours later, still Sunday):

"Hi AJ

Certainly I order those but they are done if they psa should rise in the future not as a surveillance test if psa low and u continue to be well otherwise

Hope that explains it

R".

That is why I mentioned "my great MSK Docs" in the header.

6357axbz profile image
6357axbz in reply to westof

So in answer to Tango65’s question is your answer “no”

westof profile image
westof in reply to 6357axbz

Correct. I tapered off Z&P last January and my PSA nadir was <0.014 (consistent for a few years).Since then it has increased to <0.030 (in August had an PSA, Ultrasensitive and that was <0.02).

My MO sees no reason for concern and my August scans showed no evidence of any mets.

jeff1257 profile image
jeff1257 in reply to westof

The “<“ symbol means less than. In each of your tests, your PSA was below that particular test’s lower limit of detection or the holy grail of “undetectable.” Since each test had a different lower limit of detection, you have no idea whether your PSA has increased at all. Best to take tests from same lab each time, using same assay.

Anomalous profile image
Anomalous in reply to westof

What type of scans did you have done at such a low PSA?

westof profile image
westof in reply to Anomalous

Initially(PSA 28), had a bone and CAP CT (both negative).

In August, I had both, plus a bone density (same results).

Anomalous profile image
Anomalous in reply to westof

and in august you were undetectable. I'm considering anything under .1 to be undetectable. So the CT scan and bond scan were just to make sure? Was there any reason to think they might pick something up with an undetectable PSA?

westof profile image
westof in reply to Anomalous

Thinking that it was an overabundance of caution.

Here are my August tests:

(POST-PROSTATECTOMY puzzles me. Didn't have one.)

LACTATE DEHYDROGENASE

CHROMOGRANIN A

TSH (BH L LMW YH)

PSA, POST-PROSTATECTOMY (BH GH Q)

TESTOSTERONE, TOTAL (BH GH L LMW YH)

CBC WITH AUTO DIFFERENTIAL

COMPREHENSIVE METABOLIC PANEL

timotur profile image
timotur in reply to westof

"(POST-PROSTATECTOMY puzzles me. Didn't have one.)"

"POST-PROSTATECTOMY" is the "name" the labs use to indicate an ultra-sensitive test. The one I use at Quest uses this name and is sensitive down to <0.02. The lower limit labs report differs depending on their equipment. I've have seen reports of lower limits of <0.01, <0.014, and <0.02 depending on the lab, but not one of <0.03. I would double-check that.

westof profile image
westof in reply to timotur

Hey Tim,PSA, Ultrasensitive <0.02 ng/mL

The "run of the mill": (latest test) was <0.03.

Best

However, these are the notes attached to the Ultra:(Puzzle solved: Didn't read: "OR LESS IN HEALTHY MALES WITHOUT

PROSTATECTOMY"!)

REFERENCE RANGES for PSA:

LESS THAN 0.10 ng/mL AFTER RADICAL PROSTATECTOMY.

4.0 ng/mL OR LESS IN HEALTHY MALES WITHOUT PROSTATECTOMY.

PSA values obtained with different assay methods

or kits cannot be used interchangeably.

This test was performed using the Beckman Coulter

DxI method. PSA, ICMA is not to be used as a

diagnostic procedure without confirmation of the

diagnosis by another established product or

procedure.

The lower limit of accurate quantification for

this assay is 0.02 ng/mL. PSA values less than

0.02 ng/mL cannot be accurately measured and will

be reported as less than 0.02 ng/mL. Specimens

with PSA levels below the lower limit of accurate

quantification should be considered as negative.

In patients with a negative result for post

prostatectomy PSA, serial monitoring of PSA levels

at regular intervals, along with physical

examinations and other tests, may help to detect

recurrent prostate cancer.

Test performed by Quest Diagnostics Nichols

Institute

33608 Ortega Hwy,

San Juan Capistrano, CA 92675

timotur profile image
timotur in reply to westof

It should read 0.03 without the "<" if the lower detection limit is <0.02.

Anything above <0.02, would be 0.02, 0.03, etc.

westof profile image
westof in reply to timotur

Hmm... that is exactly what I copied from "My Chart".Did Quest screw up?

timotur profile image
timotur in reply to westof

This is the same report I receive, and my numbers are similar, but anything over <0.02 does not have the "<" sign.

westof profile image
westof in reply to timotur

Got it.Thanks!

Congratulations and happy trails.

Great response to the meds. Congratulations!

westof profile image
westof in reply to tallguy2

Thanks!

Yep, All the best to you. You walked the road so now reap the rewards.

wonderful news ! ... congratulations ! ... thanks be to God ! ... best wishes ,,, Nous :)

That's amazing, I always thought you were a guy in a million, I'm so happy for you.

So would it be rude of me to ask if you've had a word with the pope or something like ?

Don't relinquish your membership of this elite club.

Phil

westof profile image
westof in reply to Lettuce231

Hmm... " I always thought you were a guy in a million".

I consider that a high complement!

However, "Darling Wife" utters those very same words (after I piss her off!)

It happens infrequently... about once a week😁.

Best

Congratulations.

There is no physical test for anxiety, only for the symptoms. You either feel it or act like you don't feel it. Prostate cancer is a shadow that will always follow no matter what the most recent test results show. Take the day off, worry about it tomorrow, and repeat that cycle of thought for a while.

Prostate Cancer (PCa) can come back even DECADES later. You may be LIKELY cured but never definitively cured ..... this is the nature of a slow-growing cancer (Breast Cancer is similar). Interval follow-up PSA testing for the rest of your life is required to make sure PCa does not rear it's ugly head again. Your ".... Doubting Thomas, Skeptic, Unsure, Mildly Concerned ....." attitude is warranted.

CONGRATS on your outstanding results ..... stay vigilant.

Hope for the best; prepare for the worst.

I love the GD too . Happy that your are grateful alive 😄 and your cancer is not working against you. Hope you can truly put it on the back burner and fully be in the present 🎁. Remission or cure are words that comfort us- you feel good right now and that all that matters right now. Your energy will Ripple to others.

westof profile image
westof in reply to 5to0

Hmm... Nice play with words😀Thanks

Congratulations. Your mix of emotions and attitude are perfectly appropriate, of course. Like that skeptical raggedy cat. Have you had testosterone recovery with those undetectable PSAs? I would prefer the term “complete remission” ( and hopefully durable).

westof profile image
westof in reply to MateoBeach

Here are May, July and last weeks T tests ( from zero, in order and declining)!

115 105 86

Awesome can you give us a quick synopsis of your road to healing....

Wish you well but don't let your guard down ever.

Congrats!!!

2 of my 3 MD's said the same thing to me (you're cured!) They were the rad-onc and my urologist of the moment. The 3rd MD (a leading medical oncologist) didn't, he basically said "Great numbers, remission for the moment and we hope it lasts.." I had IG/IMRT/Arc 83Gy, and 18 months of Lupron.

I'm satisfied with remission. I'm hoping for durable or at least long-term enough that I die from something else before that changes. I continue to hang out here because this is the very best source for what's new and reasoned discussions on PCa and treatment of it.

Awesome news! Super duper durable remission….what MO’s at mskcc as I’m being treated there too! From one deadhead to another….stay strong!

Way to go..... Now better chance of me getting Doctor(s) appointments at Sloan. Have fun and LIVE!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 11/22/2021 11:09 PM EST - JFK assassinated in 1963

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