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Advanced Prostate Cancer

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One questions doctors never seem to be able to answer is at what PSA level do you start to experience pain or physical problems?

Exrunner profile image
25 Replies

One questions doctors never seem to be able to answer is at what PSA level do you start to experience pain or physical problems? If you have had surgery, Salvage Radiation, ADT, SRBT and then stopped ADT with a continuing rise in you PSA when did you start to have pain or physical problems?

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Exrunner
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25 Replies
Huzzah1 profile image
Huzzah1

Interesting question that I hope I won't need to ever answer. My Gleason 9 Dx came when my PSA was 3.5. After 44 IMRT and 2 years on Lupron+Zytiga+P.....I will be be done in July '24. The watching and waiting will begin. Not sure what to expect as far PSA symptoms as there were none to begin with.

Huzzah1 profile image
Huzzah1

Interesting question that I hope I won't need to ever answer. My Gleason 9 Dx came when my PSA was 3.5. After 44 IMRT and 2 years on Lupron+Zytiga+P.....I will be be done in July '24. The watching and waiting will begin. Not sure what to expect as far PSA symptoms as there were none to begin with.

Tall_Allen profile image
Tall_Allen

Why are you assuming it is related to PSA level?

Exrunner profile image
Exrunner in reply to Tall_Allen

If PSA level is an indication of the growth or size of the PCa I would presume that at some point it be indicative of pain or physical problems.

Tall_Allen profile image
Tall_Allen in reply to Exrunner

Some PCa puts out a lot of PSA per the met volume; some puts out little.

Exrunner profile image
Exrunner in reply to Tall_Allen

Helps to further the cloudiness of the issue.

Derf4223 profile image
Derf4223

AFAIK pain is related to what a growing met is bumping up against -- has no correlation withj PSA.

Exrunner profile image
Exrunner in reply to Derf4223

If that is the case a MET that creates no pain at a point in time is meaningless, except for spreading more PCa seeds. If a patient is having no pain or physical problems from the PCa yet feels like life is meaningless while on ADT what is the purpose? If you can live the last several years of your life feeling relatively normal, why would you want to be on ADT feeling miserable until the inevitable occurs ?

JRLDH profile image
JRLDH in reply to Exrunner

I think that the reason for ADT is to stop the cancer from progressing. I know prostate cancer is usually slow growing but it's growing and with cancer, if the cells don't stop growing, it's an exponential problem. One immortal cell multiplies like this 1-2-4-8-16-32-64-128-256-512-1024-2048-4096-8192-16384-32768-65536 so after just 50 cell division cycles it's up to 1125899906842624 aberrant cancer cells. If ADT stops that at cycle 16 and puts the brakes on, it's frozen at 65536 cancer cells.

With prostate cancer, the cell division cycle is fairly slow. My husband had pancreatic cancer, where cell division is fast and once it stopped responding to Chemotherapy, he died within a few weeks. I wouldn't play with MET fire, just because it doesn't cause pain.

Exrunner profile image
Exrunner in reply to JRLDH

Appreciate the input.

Thanks

Derf4223 profile image
Derf4223

Wow Ex, not everyone is miserable on ADT (take me for instance.) When my urologist told me I had PCA, in short order I realized it was the biggest wake-up call of my life. Taking the news as a wake-up call was a conscious decision. What you are talking about is depression. I had low moments during my first year with APCa and found uplift in listening to music. But the wake-call part was to begin frequent and meaningful exercise. I started that after 2 months of firmagon and 1 month of RT,. As I ramped up exercise my low moments receded. It helps a lot that I have a great wife who is sure I will be fine. She has had a way or being right far more often than not for the 34 years our marriage has existed. We exercise together and it has helped her with some issues with depression and anxiety, not to mention getting fitter and stronger and weight loss.

Exrunner profile image
Exrunner in reply to Derf4223

Depression, anxiety and stress all come with the journey. Your way of dealing with it is great. Thanks for sharing.

Derf4223 profile image
Derf4223 in reply to Exrunner

One of many LT ADT SE's is mental and feeling instability. @Tall_allen and my MO do not agree that this should affect one's behavior, but HU APCA members have posted that they indeed are having affected behavior issues. The key thing is to go into your oncology clinic with a very tight rein on yourself. Patients are being closely observed, secret notes taken, etc.

GAdrummer profile image
GAdrummer

There different kinds of prostate cancer. The lymph nodes only kind my husband has did not cause pain of itself, just the treatments caused pain, mental and physical problems. Only about 10% of the men get that kind. The painful kinds are the ones that are growing inside bones or are blocking the urethra. Measurement of pain is subjective and the amount of pressure exerted by tumor growth in a bone confined area is variable (dependent upon the volume of the space in the confined area and the proximity of nerve bundles). So there is no one threshold value for PSA = pain.

Exrunner profile image
Exrunner in reply to GAdrummer

As good and explanation as I have heard or read.

Thanks.

Gl448 profile image
Gl448

PSA does not pain. Impossible to say that for every man a certain PSA means pain.

PCa damage to organs, bones, whatever, is what causes the pain.

I personally have several very painful bone mats, despite my PSA only being 0.50.

From GhatGPT4:

Prostate-specific antigen (PSA) itself does not cause pain. PSA is a protein produced by both normal and malignant cells of the prostate gland and is found in the blood. It is often measured as a blood test to screen for prostate cancer or monitor the treatment of prostate cancer, as well as to check for recurrence. Elevated levels of PSA can indicate prostate cancer, but they can also be caused by other prostate conditions, such as benign prostatic hyperplasia (BPH) or prostatitis, which are not cancerous.

Pain associated with prostate conditions, including prostate cancer, is generally not caused by the PSA protein itself but rather by the condition affecting the prostate. For instance:

- **Prostate cancer** might not cause pain in its early stages. If pain occurs, it may be due to the cancer spreading to other parts of the body, such as the bones.

Exrunner profile image
Exrunner in reply to Gl448

GI448 I understand PSA does not cause pain, but it can be an indicator of the progression of the PCa. Like you I have had METS to the bone at a very low PSA levels on two occasions even though I was on ADT. Both times I had SRBT. If you have not had one of the newer scans, I would suggest you consider it. Identify where the PCa is at and consider SRBT.

I will be having my third Pylarify F18 scan on this coming Tuesday. If any new lesions are discovered, I will once again consider SRBT...MDT as an option for APCa.

health.harvard.edu/blog/pro...

Gl448 profile image
Gl448 in reply to Exrunner

I had an F18PYL-PSMA scan yesterday.

One questions doctors never seem to be able to answer is at what PSA level do you start to experience pain or physical problems?

As I said, it can’t be answered in a one size fits all mode.

We see people post here with PSA in hundreds or thousands before knowing something’s wrong, and others with great pain in single digits.

Good luck with your scanning and treatment

Exrunner profile image
Exrunner in reply to Gl448

Likewise!

witantric profile image
witantric

In my experience it depends on the patient. I have seen some patients with very high psa level but no symptoms and vice versa. So, I don’t think there is no one universal answer.

Exrunner profile image
Exrunner in reply to witantric

I am coming to that conclusion.

Thanks

docbulldog profile image
docbulldog

Quick note, RP 2006, RT 2008 , became metatastic in 2014.

I have posted several times about my journey with high PSA. 06/2022 following 3 sessions of Cabazitaxel my PSA rose to 211. I then started Pluvicto treatment , only lasted 4 sessions with PSA climbing to 758. I started Docetaxel/Carboplatin chemo 01/2023 and it worked for a while as PSA went down to 176 by 07/2023, but i started having lab issues with poor platelet counts. Scans show plenty of bone mets but I can say no abnormal pain for a 79 yr old.

I wish my current treatment of Nubequa and Lynparza were doing the job, PSA now on the rise to 446 as of 03/18/24. Meeting with onc today for new plans I hope.

Keep up the fight guys but enjoy life ...

Exrunner profile image
Exrunner in reply to docbulldog

What a journey. I hope your Oncologist can find something that is effective for you.

Have they considered PLUVICTO?

What is PLUVICTO® (lutetium Lu 177 vipivotide tetraxetan)?

PLUVICTO is a radiopharmaceutical used to treat adults with an advanced cancer called prostate-specific membrane antigen­–­positive metastatic castration-resistant prostate cancer (PSMA-positive mCRPC) that:

has spread to other parts of the body (metastatic), and

has already been treated with other anticancer treatments

docbulldog profile image
docbulldog in reply to Exrunner

Did 4 sessions a year ago last August, that’s when PSA started jumping up again. I was sure hoping for better results.

Exrunner profile image
Exrunner

Miss that you had it already. That is not good news!

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