When to start: Gleason 3+4. I had... - Advanced Prostate...

Advanced Prostate Cancer

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When to start

Coupe31 profile image
15 Replies

Gleason 3+4. I had robotic prostatectomy in 2010 , PSA in 2018 was 1.5. All scans including clinical trial PSMA 18F were clear. IMRT and 4 months Eligard and Casodex. PSA was reported to be less than 0.1. Past three years PSA has risen from 0.03 to 0.05. (.03, .04, .04, .05, .02 and .05) PSA as of now has not doubled in three years. MO wants to start treatment if PSA rises to 0.07. Seems a little too early for me. NO?

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Coupe31 profile image
Coupe31
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Justfor_ profile image
Justfor_

What does he have in his mind? You have done the standard treatments of RP and sRT successfully. Your latest PSA track manifests a very good prognosis.

Horse12888 profile image
Horse12888 in reply toJustfor_

Since the patient can't have more surgery or radiation, all the doctor can be talking about is ADT. If I were in this position, I would immediately get a new onc, because this viewpoint is wildly incorrect. It's incorrect of QAnon proportions.

Magnus1964 profile image
Magnus1964

All of these PSA numbers are very low. Those small bounces in PSA could be due to temporary irritations in the prostate area. I don't see any need for treatment at this time.

sm60 profile image
sm60 in reply toMagnus1964

I would concur...were I a doctor, and worth considering.

pjoshea13 profile image
pjoshea13

Yes. Get a second opinion. -Patrick

Tall_Allen profile image
Tall_Allen

Yes, too early. You should not even be using an ultrasensitive PSA test.

Coupe31 profile image
Coupe31 in reply toTall_Allen

Yes Johns Hopkins was happy to use second generation PSA test to claim success at <.1. Using third generation is really “rearranging the furniture” and I see as a possible radiation bounce.

GP24 profile image
GP24

Here is a video from UCSF which discusses the use of ADT when the PSA value begins to rise:

uctv.tv/shows/Systemic-Ther...

AlanMeyer profile image
AlanMeyer

Hello Coupe31,

In an earlier post you spoke of treatment at Johns Hopkins. That's a world leading cancer treatment institution and the radiation oncologists there know vastly more than I do, so please take my ideas for the inexpert and uneducated opinions that they are.

I was treated with radiation plus Lupron at a National Cancer Institute clinical trial in the period 2003-2004. I have had no treatment since then. During the 17 year period since the end of my treatment my PSA bounced around quite a bit. The lowest it ever reached was 0.07. In 2011 I tested at 0.26. I was advised to do nothing and PSA went down again. In 2014 it was down to 0.08. Since then it has been down as low as 0.07 again, and as high (if I remember correctly) as 0.19. A recent test was 0.11. I don't expect to do anything unless my PSA goes above at least 2.0, and even then, I want to think it out very carefully and consult a very good oncologist. My case is not identical to yours because my prostate is still in my body and at least some bits of it are likely still alive. My PSA upturns may be more likely to be caused by infections or irritations than yours. Still, I think caution on treatment is in order for you.

It's not clear to me that, if your PSA goes up to 2.0, and maybe to 4.0 or even 10.0, your response to new treatment will be any worse than it would be now at 0.07. There may be no long term benefit to treatment now as compared to later. In fact, a few years from now your treatment options may expand due to new research. Ask your oncologist about that. Obviously he thinks the benefit will be greater or he wouldn't recommend treating it now. Ask him to be specific about what he thinks will happen if you do and if you don't get treatment.

As I see it, there are two downsides to getting more treatment (presumably Lupron or similar ADT) now.

First, you'll have to deal with side effects. My side effects included hot flushes, loss of libido and potency, and loss of muscle tone. The side effects were bearable for me, and I would accept them again if I needed ADT to stay alive and/or reduce cancer pain, but I didn't like them at all. I haven't heard anyone ever say he did.

Second, while you are on ADT your PSA will vanish and you'll have no way of knowing if it would have gone up, down, or stayed the same without the ADT. It may be that the ADT is doing you no good, but you may not have any way of knowing that and you'll potentially get shot after shot, maybe for years, for a condition that was not dangerous. Ask the oncologist about that too.

Best of luck.

Alan

maley2711 profile image
maley2711 in reply toAlanMeyer

I thought the rule was PSA nadir + 2? I would look for studies re this topic, to enhance your conversation with your MO?

Coupe31 profile image
Coupe31

I'm getting a second opinion at the end of August from Dr. Scholz a medical practice exclusively focused on prostate cancer. He is also the executive director of the Prostate Cancer Research Institute.

AlanMeyer profile image
AlanMeyer

Scholz is certainly a famous PCa specialist. If I remember correctly, some of his ideas have been rejected by other specialists but I'd certainly want to listen to his opinions. I suggest you be sure to ask him:

What are the pros and cons of getting treatment this early?

What does he believe should be the PSA or other value that should trigger getting treatment?

Good luck.

Alan

Poowater profile image
Poowater

You have had a brilliant run. Get second opinion.

You are <0.1. That is considered undetectable. Frankly you are causing yourself needless worry and anxiety. Besides my research medical oncologist professor told me that in 2010 fully 95% do not know what to do with ultra sensitive PSA tests and it certainly would not change any treatment decisions.

GD

TwilightZone profile image
TwilightZone

FYI: I had the surgery in Dec. 2015. When PSA rose to 1.47 in Sept 2018, had 40 rounds of radiation - then put on 22.5mg Eligard quarterly. Today, PSA is 0.06. Me thinks your stats are good. I started with Gleason score of 4+5.

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