"Stages" of cancer? Testosterone? Are these important?

Posted by bluegill @bluegill, May 26 10:18am

I'm just curious that none of my doctors ever told me what "stage" of cancer I have/had. Nor have any of them tested my testosterone, or asked if I want it tested. Am I missing out?

(PSA 28, Gleason 9, radiation + 3 years Lupron, now 4 years out with PSA of 0.28 and slowly rising, no apparent metastasis)

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@bluegill

I'll ask the doc about Decipher, but I was told early on that my cancer was "aggressive and high grade". I freaked out and thought that meant "advanced", but I was reassured it wasn't. The imaging tests showed no signs of spread.

So, is the testosterone level just about sex, or about energy level in general? My evergy level is a lot better now that I'm off Lupron.

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Testosterone monitoring is to confirm that androgen-deprivation therapy drugs (like Firmagon or Orgovyx) are still working.

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@bluegill

I'll ask the doc about Decipher, but I was told early on that my cancer was "aggressive and high grade". I freaked out and thought that meant "advanced", but I was reassured it wasn't. The imaging tests showed no signs of spread.

So, is the testosterone level just about sex, or about energy level in general? My evergy level is a lot better now that I'm off Lupron.

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It does monitor ADT effectiveness, but I noticed on most of my post op PSA’s a direct correlation with PSA LEVEL and testosterone level. They followed each other pretty closely, which is what you could expect, and higher T does make one feel stronger, sexier and all the rest!

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one year in, they always test for my psa but just recently, the last two months, they have been testing for testosterone. They say that feeds the cancer so in my book the lower the number the better for me. I understand some want higher levels, but at 69 I have no problem with having < 3 level. best to all.

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@stevecando54

one year in, they always test for my psa but just recently, the last two months, they have been testing for testosterone. They say that feeds the cancer so in my book the lower the number the better for me. I understand some want higher levels, but at 69 I have no problem with having < 3 level. best to all.

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Exactly. As Pete Seeger once sang

«How do I know my youth is all spent?
My get up and go has got up and went.
In spite of it all, I'm able to grin,
When I think of the places my get up has been!»

😊

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Well, the fact that your medical team has not tested your testosterone level is interesting. Generally you would want a baseline measurement, then around three months of starting systemic treatment, measure to determine if the systemic treatment with ADT had dropped your testosterone to castrate levels. That level used to be < 50, more and more it is < 20. If you come off treatment, then it's useful to measure testosterone for correlation with any return of PSA.

Staging is important in treatment decisions, are you say N1 or M1...

You don't provide a lot of clinical data so I'm going off "assumptions" based on your post. It seems you were diagnosed "de novo, had some type of radiation to the prostate combined with systemic therapy, ADT for three years, then came off treatment and a year later your PSA is "slowly" rising.

If my read is correct then and you say "no apparent metastases," then it would seem you had some type of imaging, if conventional CT and MRI, unsurprising it shows nothing. If it was a PSMA, same, at that PSA level, around a one-third chance of locating recurrence, less depending on your PSA kinetics.

If you stopped systemic treatment after three years, most urologists and oncologists would check your PSA every three months and likely your testosterone too. The PSA tests would give more clarity to he "slowly" rising in the form of PSA doubling and velocity - https://www.mskcc.org/nomograms/prostate/psa_doubling_time

If that PSADT is less than six months, a decision about going back on treatment may be necessary, greater than that, say 6-12, then that's the gray zone, greater than 12 months, possibly continue to monitor.

What's not in your favor is that GS 9, that is high risk and puts you in Grade Group 5.

It's time to have your medical team collect pertinent clinical data to inform both you and them in making decisions.

You have some:
GS
Grade Group.

Other you may want:
PSADT
PSAV
Staging - informed by PSMA imaging - N1, M1,...
Genomic Testing

With that type of clinical data, you, in conjunction with your medical team can make any treatment decisions - if to treat, with what, when, for how long and whether continuous or for defined periods, If the latter, have decision criteria for coming off and actively monitoring with decision criteria for starting back on treatment.

Kevin

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@kujhawk1978

Well, the fact that your medical team has not tested your testosterone level is interesting. Generally you would want a baseline measurement, then around three months of starting systemic treatment, measure to determine if the systemic treatment with ADT had dropped your testosterone to castrate levels. That level used to be < 50, more and more it is < 20. If you come off treatment, then it's useful to measure testosterone for correlation with any return of PSA.

Staging is important in treatment decisions, are you say N1 or M1...

You don't provide a lot of clinical data so I'm going off "assumptions" based on your post. It seems you were diagnosed "de novo, had some type of radiation to the prostate combined with systemic therapy, ADT for three years, then came off treatment and a year later your PSA is "slowly" rising.

If my read is correct then and you say "no apparent metastases," then it would seem you had some type of imaging, if conventional CT and MRI, unsurprising it shows nothing. If it was a PSMA, same, at that PSA level, around a one-third chance of locating recurrence, less depending on your PSA kinetics.

If you stopped systemic treatment after three years, most urologists and oncologists would check your PSA every three months and likely your testosterone too. The PSA tests would give more clarity to he "slowly" rising in the form of PSA doubling and velocity - https://www.mskcc.org/nomograms/prostate/psa_doubling_time

If that PSADT is less than six months, a decision about going back on treatment may be necessary, greater than that, say 6-12, then that's the gray zone, greater than 12 months, possibly continue to monitor.

What's not in your favor is that GS 9, that is high risk and puts you in Grade Group 5.

It's time to have your medical team collect pertinent clinical data to inform both you and them in making decisions.

You have some:
GS
Grade Group.

Other you may want:
PSADT
PSAV
Staging - informed by PSMA imaging - N1, M1,...
Genomic Testing

With that type of clinical data, you, in conjunction with your medical team can make any treatment decisions - if to treat, with what, when, for how long and whether continuous or for defined periods, If the latter, have decision criteria for coming off and actively monitoring with decision criteria for starting back on treatment.

Kevin

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Wow, you've given me lots of homework. Thanks.

Yes, my PSA is checked every 3 months. Maybe my testosterone is too, but I've never seen the results.

My PSA doubling time is about 7 months now, so the urologist is suggesting that "at some time" I may need to go back on Lupron.

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@bluegill

Wow, you've given me lots of homework. Thanks.

Yes, my PSA is checked every 3 months. Maybe my testosterone is too, but I've never seen the results.

My PSA doubling time is about 7 months now, so the urologist is suggesting that "at some time" I may need to go back on Lupron.

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I have been on Lupron for about 11 years and it is keeping my PSA inline.

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@cw5rbillleonard

I have been on Lupron for about 11 years and it is keeping my PSA inline.

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@cw5rbillleonard, a belated welcome. Good report that ADT is keeping your PSA and cancer in check. What treatment did you start with 11 years ago?

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Do not take testosterone for any reason. Prostate cancer eats testosterone for breakfast, lunch, and dinner.

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