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G9 - 6 years out - PSA Results

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Grillmaster
New Member
Joined : May 2016
Posts : 8
Posted 10/31/2019 12:57 PM (GMT -7)
Just got 6 month PSA results and again a .01 rise. Went undetectable for 5 years and a .01 rise every 6 months so are at .04 now. We see urologist tomorrow. I am not panicking as I know there are lots of weapons in the arsenal. Hubby’s info should be in the signature line. Any advise or words of wisdom? We are not currently seeing an oncologist, our urologist indicates he could treat if it comes to that in collaboration with the oncology team. This site and you all are a daily source of education and inspiration for me.
Age at Diag 60
PSA: 9.8 at diag
<0.06 11/2013 - 5/2017
<0.01 12/2017
.02 6/18
.02 10/18
.03 4/19
.04 10/19
RALP: 7/2013, 2 yrs Trelstar, 39 IMRT
Gleason: 4+5 Gleason 9
Tumor extent: Both lobes involved (80%) mainly rt 3.0 cm in max.
Inked Margin: Involved (2 mm)
Invasion through capsule
Rt seminal vesicle involved
Novascular invasion
Perineural Inv: Present
Lymph Nodes not involved
Stage:pT3B pN
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George_
Veteran Member
Joined : Apr 2016
Posts : 592
Posted 10/31/2019 1:45 PM (GMT -7)
An amazing result for a Gleason 9. Further treatment should not start before the PSA value gets above 2.0 ng/ml. Even then you can just watch and wait. It will take years until you reach this PSA value.
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mattam
Veteran Member
Joined : Aug 2015
Posts : 1932
Posted 10/31/2019 2:41 PM (GMT -7)
Sometimes the best thing to do is to do nothing at all. You do have a long ways to go before additional treatment. I would definitely get a medical oncologist on board at this point to get his/her long range treatment opinion.
Part I
2015 (Age 54) PSA: 20.8
Bx: All cores G7 (4+3)
RALP & Adjuvant RT
Pathology: G8 (4+4)+5
PSA nadir: 0.1, steady increase until 2019: 64.13

Part II
2019, March: Lupron/Xtandi, PSA: 1 month: 0.126; 3 months: 0.036; 6 months: <0.02
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InTheShop
Elite Member
Joined : Jan 2012
Posts : 11074
Posted 10/31/2019 4:52 PM (GMT -7)
At this point it's just watch and wait. The question will be, when will you have to start treatment?

Could be a long time.

When it comes you'll want a good team - URO and medical oncologist.

In the meantime - enjoy life and do lots of stuff.

Andrew
I'll be in the shop.
Age 59, 52 at DX
PSA:
4.2 10/11, 1.9 6/12, 1.2 12/12, 1.0 5/13, .6 11/13,
.7 5/14, .5 10/14, .5 4/15, .3 10/15, .3 4/16, .4 10/16, .4 5/17, .3 10/17 .3 4/18, .4 11/18
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
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Mumbo
Veteran Member
Joined : Nov 2018
Posts : 561
Posted 10/31/2019 5:13 PM (GMT -7)
Gmaster - I decided to stay with standard PSA testing (<0.10 is non-detectable) after going with ART since the small values no longer matter. You have another year or so before tripping up that test it appears. As George indicated, the values of significance are much higher now for anything to be done now that the two big bullets are spent.

The urologist and RO are not really part of my future solution unless needed for something specific. If and when my PSA exceeds 0.10, I will slowly start searching out the best oncologist/specialists I can find (Kwon at Mayo is closest) and start the dialog with them. I will want to go for a cure and not just accept a Lupron shot from anyone as the next step regardless of standard protocol. If that is my future, so be it but not without a complete investigation of the best ideas.

You are not quite at the point to get busy yet in my opinion. Take it slow and see what develops.
7/2018-66yo, PSA 4.1->5.1
8/2018-MRI, PI-RADS 5
8/2018-MRI Biopsy,4+3
9/2018-CT/Bone clear
11/6/18-RALP@St. Johns
11/2018-Post-Op Path G7(4+3)5% Tert Gr 5, pT3a pN0 Gr 3
Pos.Marg (SM+), EPE, <3mm, L=0.1mm?
11/2018-Decipher 0.47, Ave Risk
1/2019-Epstein-G9(4+5) Gr5
“Difficult to distinguish EPE vs intraprostatic incision,3mm” Extent:pT2x
2/2019-PSA<0.1
4-6/2019 ART
5/2019-PSA<0.1
8/2019-PSA<0.1
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Redwing57
Veteran Member
Joined : Apr 2013
Posts : 2701
Posted 11/1/2019 2:52 PM (GMT -7)
If you've had your prostate removed, the "Phoenix" criterion for recurrence is at 0.2. The comment above to wait for 2.0 is only for those still with a prostate, having had radiation as a primary therapy.

The trend is more important than the value. A growth process generally doubles on a logarithmic trend, so if you plot your PSA levels vs time on a log plot it would be a straight-ish upward line. If that's happening, then it's likely to be growth and just a matter of waiting until you think it appropriate to do other analyses or treatments, along with your doctor's guidance.

Finally, I jumped in since you're also a G9. The G9 tumors, specifically the Type 5 cells, don't make much PSA. So comparing your PSA to that of, say, a G7 3+4 is misleading. Those put out much more PSA per gram of tumor tissue than a G9 does, like 3 or 4 times as much depending on the mix of Type 3,4, or 5 cells. If they're recurring at 0.2, then yours could be recurring at almost 1/4 of that. This factor is greatly neglected by urologists, since for better or worse there just aren't that many of us G9 cases. [Edit: this may be somewhat arguable, and is not discussed much today, but that's my ever-so-humble understanding. Here's a link to a post from some time back talking about this concept.]

All of which is to say I am in favor of an earlier and more aggressive response if the trend is supportive of any kind of growth process, even at a lower level. But that's just me....
55@Dx on 4/16/13. PSA 5.2, G9(5+4), PNI+, cT3a by MRI.
IGRT - 44 sessions (79.2 Gy, 50.4 Gy pelvic)
ADT2 - Lupron+Casodex (5/13-3/16)

PSA:
8/13-5/16 <0.1 (ADT2)
5/16-3/17 recovering from ADT2
3/17-3/19 up and down, slow drift up ~ 0.6 - 1.0 (no TX)
4/19 - resumed ADT (due to slow up trend)
7/19 - <0.1

My Story

Post Edited (Redwing57) : 11/1/2019 4:20:43 PM (GMT-6)

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GoBucks
Veteran Member
Joined : Jan 2018
Posts : 629
Posted 11/1/2019 6:25 PM (GMT -7)
No offense to your Uro but he is the last person I'd be relying upon. Yes, hear his opinion but you need to find the best MO you can and see what they propose. And then maybe get a 2nd opinion. His situation is by no means horrible and I don't mean to sound dramatic but it's his life so why wouldn't you see the best MO you can.?
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George_
Veteran Member
Joined : Apr 2016
Posts : 592
Posted 11/2/2019 12:46 PM (GMT -7)
Redwing,

Grillmaster wrote: "RALP: 7/2013, 2 yrs Trelstar, 39 IMRT" so he had surgery and adjuvant or salvage radiation. After that you do not need to act if the PSA value gets above 0.2 ng/ml. All you will do is start with ADT and you can start with that at a PSA value of 2.0 ng/ml. This is even a very low PSA value to start with ADT in my opinion. Your URO may have a different opinion but this is overtreatment, I think.

George
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Naples
Regular Member
Joined : Dec 2016
Posts : 107
Posted 11/4/2019 7:11 PM (GMT -7)
Grillmaster,

There are many guys on this site that would tell you to ditch the Urologist and find a good Medical Oncologist. I’m another one.

Good Luck!
DX 7/2016. 61 years of age. Radical Prostate Surgery 9/28/2016. G9 5+4. 3 nodes positive. T3b, Casodex & Lupron 2 years. Radiation, 39 completed 3/17/2017.
PSA 7/2016 4.5
PSA 10/2016 1.87
PSA 4/2017 0.0
PSA 7/2017 0.0
PSA 10/2017 0.0
PSA 2/2018 0.0
PSA 5/3/2018 0.0
PSA 8/7/2018 0.0
PSA 4/4/2019 0.0
PSA 8/6/2019 0.0
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BillyBob@388
Veteran Member
Joined : Mar 2014
Posts : 3918
Posted 11/5/2019 7:26 AM (GMT -7)
That is actually not a terrible result for a fellow G9 over so many years. Actually, Y'all are ahead of me, I have been at .06 for almost 2 years now, and I am almost 6 years out. But I am over due for a test, and might be up even more. I'm grateful to have made it this long without more treatment.

" Any advise or words of wisdom? We are not currently seeing an oncologist, our urologist indicates he could treat if it comes to that in collaboration with the oncology team.". That sounds like you have it covered. Whatever is in there does not yet appear to be aggressive, and I'm sure you will jump on additional treatment as soon as clearly indicated. You are like me, RALP only so far? (EDIT: never mind, looking at the signature I see you have had some RT also, so you have stayed on top of it)
PSA 10.9 ~112013
Bx on 112013 at age ~65yrs, with 5 of 12 pos, G9(5+4), T2B.
RALP with lymph nodes at Vanderbilt 021914. (nodes clear, SV+, G9 down graded to 4+5, 1 focal margin )
only rare pad use after 1 year
PSA <.01 on 6/14 and all until 9/15 = .01, still .01 9/16, .02 on 3/17,6/17,10/17, .06 1/18, .06 4/18, <.05 7/18, .06 10/18, .06 04/19

Post Edited (BillyBob@388) : 11/5/2019 7:31:37 AM (GMT-7)

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BillyBob@388
Veteran Member
Joined : Mar 2014
Posts : 3918
Posted 11/5/2019 7:35 AM (GMT -7)

Redwing57 said...
If you've had your prostate removed, the "Phoenix" criterion for recurrence is at 0.2. The comment above to wait for 2.0 is only for those still with a prostate, having had radiation as a primary therapy.

The trend is more important than the value. A growth process generally doubles on a logarithmic trend, so if you plot your PSA levels vs time on a log plot it would be a straight-ish upward line. If that's happening, then it's likely to be growth and just a matter of waiting until you think it appropriate to do other analyses or treatments, along with your doctor's guidance.

Finally, I jumped in since you're also a G9. The G9 tumors, specifically the Type 5 cells, don't make much PSA. So comparing your PSA to that of, say, a G7 3+4 is misleading. Those put out much more PSA per gram of tumor tissue than a G9 does, like 3 or 4 times as much depending on the mix of Type 3,4, or 5 cells. If they're recurring at 0.2, then yours could be recurring at almost 1/4 of that. This factor is greatly neglected by urologists, since for better or worse there just aren't that many of us G9 cases. [Edit: this may be somewhat arguable, and is not discussed much today, but that's my ever-so-humble understanding. Here's a link to a post from some time back talking about this concept.]

All of which is to say I am in favor of an earlier and more aggressive response if the trend is supportive of any kind of growth process, even at a lower level. But that's just me....

Well considering all that, about the G9's vs PSA, maybe I should be more nervous than I am, and more aggressive at pushing for more treatment?
PSA 10.9 ~112013
Bx on 112013 at age ~65yrs, with 5 of 12 pos, G9(5+4), T2B.
RALP with lymph nodes at Vanderbilt 021914. (nodes clear, SV+, G9 down graded to 4+5, 1 focal margin )
only rare pad use after 1 year
PSA <.01 on 6/14 and all until 9/15 = .01, still .01 9/16, .02 on 3/17,6/17,10/17, .06 1/18, .06 4/18, <.05 7/18, .06 10/18, .06 04/19
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Naples
Regular Member
Joined : Dec 2016
Posts : 107
Posted 11/5/2019 8:43 AM (GMT -7)
Low PSA is clearly a measure that is positive. As we all know the rate of doubling is more of an indicator of aggression in the cells. Having said this, I did my homework on Urologist vs Oncologist. Some of this comes from a retired Uro that I play golf and drink with. Emphasis on drink with. His perspective and honesty has been helpful. My original oncologist left a major hospital and practice to gain the experience of an academic/research position. His replacement came from a world class academic/research position to my hospital to be a practitioner. The combination of these experiences provide the missing link that Urologist do not have. Like any profession the key to success is focus, commitment to a mission, and the education to increase the chance of being right more than average. Think about that. Urologists do vasectomies too. An oncologist is living in research and trials every day, as well as living with other specialists. The Medical Oncologist is not the quarterback, they are the head coach. Many QBs can prescribe Lupron, execute radiation, etc. Few can figure out what is the most effective combination for you. Why not give yourself the best qualified head coach and advocate of your life?

Our job is to stay alive. Do your homework...do your job well.

Good Luck Brothers!
DX 7/2016. 61 years of age. Radical Prostate Surgery 9/28/2016. G9 5+4. 3 nodes positive. T3b, Casodex & Lupron 2 years. Radiation, 39 completed 3/17/2017.
PSA 7/2016 4.5
PSA 10/2016 1.87
PSA 4/2017 0.0
PSA 7/2017 0.0
PSA 10/2017 0.0
PSA 2/2018 0.0
PSA 5/3/2018 0.0
PSA 8/7/2018 0.0
PSA 4/4/2019 0.0
PSA 8/6/2019 0.0
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Redwing57
Veteran Member
Joined : Apr 2013
Posts : 2701
Posted 11/17/2019 5:43 PM (GMT -7)

George_ said...
Redwing,

Grillmaster wrote: "RALP: 7/2013, 2 yrs Trelstar, 39 IMRT" so he had surgery and adjuvant or salvage radiation. After that you do not need to act if the PSA value gets above 0.2 ng/ml. All you will do is start with ADT and you can start with that at a PSA value of 2.0 ng/ml. This is even a very low PSA value to start with ADT in my opinion. Your URO may have a different opinion but this is overtreatment, I think.

George


Ah, thanks. That's a good clarification. Yeah, I missed the bit about already having the initial follow up treatments. I don't want to be unnecessarily alarmist. Of course, with a G9 my personal preference is to be most aggressive, and I'm not sure there is such a thing as overtreatment for these cases. But that's just me, and others may certainly have a different opinion!

For what it's worth, doubling time seems more important than the actual level as this disease progresses. What to do in the face of a rising PSA at any point involves multiple factors, and a lot of discussion between patient and doctor.

Best wishes to all fighting this beast.

(Just checked back for follow up on this one. I seldom visit this forum anymore, for a few reasons.)
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Skypilot56
Veteran Member
Joined : Mar 2017
Posts : 1186
Posted 11/17/2019 5:54 PM (GMT -7)
Redwing glad to see you back
Male 63 DX @ 60
Dad had PC
2002. Psa. .08
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo,Mn
Gleason 9, pt3bno, SVI, EPE, 35 LN-
4- 17 Hernia surgery
6- 17 psa 0.13
7- 17 psa 0.12 3TMRI coil - clear
8- 17 shoulder replaced
10- 17 psa 0.16
10-12-17 Lupron
12- 17 psa <0.10
12-18-17 SRT
2-7-18 SRT done 72gy
4-18 psa <0.10
10-18 psa <0.10
3-19-19 Laminectomy Surgery
5-8-19 psa <0.10
10-19 <0.10
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