Lets finally peel back this onion. - Advanced Prostate...

Advanced Prostate Cancer

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Lets finally peel back this onion.

Costarica1961 profile image
20 Replies

This may have approached in the past, I consistently hear mixed messages about the PSA. And How important, or uninportant it is in the big scheme of your diagnosis or prognosis, My oncologist always says were treating the cancer not the PSA but in the same breath he calls me with what I consider a somber concerned tone, anytime my PSA goes up at any point, with legitimate concern. I am currently on a upward tick with my psa although I am starting Psma Lu 177 soon. Which has a moderate effect often on PSA but attacks the tumors and benefits your progression, do I then dismiss a rising psa while on a treatment like lu 177 or radium and only focus on the scans and how I feel.

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Costarica1961 profile image
Costarica1961
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Great question, which I have also asked many times. More often than not I get the same response to not focus on a rising PSA, but look at the scans. Easier said than done.🤭😟

RyderLake2 profile image
RyderLake2

Hello, Scans are very important, particularly PET scans. As perhaps you know, some PCa cells do not emit PSA such as neuroendocrine and small cell. So your doctor is right, you want to treat the cancer not the PSA. The good news is PSMA is highly expressed in metastatic castration resistant prostate cancer. Moreover, in killing your PSMA emitting cancer cells Lutetium may (or may not) kill nearby cancer cells that do not emit PSMA. One final thought, several German doctors, who have been working with Lutetium 177 much longer than here in North America, want their patients to be on Xtandi (enzalutamide). They feel it improves the uptake of Lutetium. Pura Vida mi amigo!

Javelin18 profile image
Javelin18

I think the magnitude of the change in PSA and the trend matter, along with your history. If your PSA has been undetectable for years after radical prostatectomy, then shows up and climbs, that's a sign of biochemical recurrence. If you being treated with a therapy, your PSA is in the low double digits and you get fluctuations up or down if a few ng/ml then it probably isn't conclusive.

While I was on Lu-PSMA treatment my PSA went from 100 to 238. Even without a scan, that was a sign that the treatment wasn't working.

LearnAll profile image
LearnAll

In order to get answer to your question we need to understand many other things esp. the history of PSA. Prior to PSA's discovery 30-40 years ago, Doctors used another blood test called PAP (Prostatic Acid Phosphatase) to diagnose and monitor prostate cancer. Then, PSA came...It was more sensitive in detecting cancer cell growth. The goal was to catch cancer as early as possible and provide treatment early.There are different shades of Prostate Cancer cells...In many men , their Cancer cells produce a lot of PSA (includes me as I was diagnosed when PSA was 830) On the other hand, there are men whose cancer cells produce very little PSA. So which type is more aggressive...? In fact, High PSA producing cancer cells are much less aggressive than very low PSA producing Cancer cells. Therefore, one has to know what type of prostate cancer he has. This is possible to ascertain by a plethora of biomarkers, pathology , Germline testing, NE biomarker testing, scans and of course Clinical behavior of Cancer in a particular man.

So, why there are men who were diagnosed with PSA of 3000, 5000 and even 10000 live for years.

Many 1000s ones are right here on this forum and are alive after many years of diagnosis.

The very low PSA producing cancer cells are very aggressive type in general and men live shorter lifespan . Neuro-Endocrine cancer cells do not produce PSA ,they are most aggressive.

Because SOC is "one size fits all " and treatments are doled out en mass without knowing .

specifically an individual's cancer and its subtype. Insurances do not want to pay for this type of precision diagnostic and therapeutic method...Doctor do not want to individualize care because they are given a list ..the SOC list.. which they have to follow . They become robotic as it takes less time and less energy and it pays almost same amount of money.

So..everyone is interested in this thoughtless, robotic system...Man like myself who reject the "SOC commandments" are labelled "rouge" or " outliars" or "non believers."

Folks..I will tell you to learn more about different types of..different shades of cancers and pin point what exactly you are dealing with. Individualized treatment is like a beautiful taylor-made suit which fits perfectly...

Roscoaus2000 profile image
Roscoaus2000 in reply to LearnAll

I am one of those. I didn’t take early treatment in 2005 when my psa was 7. It went to 12,29, 59 over 5 years and I elected to await symptoms. Even at 1350 in 2015 I had minimal symptoms at age 75. Only late 2016 and psa 9000 did I wave worrying symptoms. Upon treatment with ADT my psa dropped to ,.001 in 4 months and after 12 months I felt in good condition, walking miles, playing golf. Oncologist predicted I may live until 2020 (80 yo). Now at 82 I sleep 6-7 hours without waking. I have a great quality of life and Oncologists latest prediction is to live to 85. I obviously have non aggressive cancer. Where can I find out more about the different types of cancer?

LearnAll profile image
LearnAll in reply to Roscoaus2000

Yes Rosco.. you do have non aggressive "advanced" Prostate Cancer...You are lucky like myself. I did not find out my PSA test results for almost 10 years and it has been rising continuously without any symptoms. Just like you, a few months of ADT brought PSA from 830 to 0.19. And everything went fine after that.Just imagine, if you agreed to SOC in 2005, you would have lost your prostate gland 16 years ago with complications like incontinence etc by now. Like you ,I was lucky that I did not know my PSA 12 years ago when it was in 20s..I would have been prostate less for last for 12 years and mutilated by toxic SOC treatments all these years. One strong clue that your PCa is less aggressive type is that you had PSA nadir (lowest PSA after ADT) very low ..i. e... 0.001 I will not be surprised if you live up to hundred years.

Eating plant based foods esp Resveratrol, Sulforaphane rich foods...walking miles every day, having 6 to 8 hours of sleep ..these interventions can keep your PCa non aggressive for many more years. Best of luck.

Karmaji profile image
Karmaji in reply to LearnAll

We have to have adaptive therapy medical follow up. Right now we are victim of inhuman outdated med care systems. All is guided with obsession and blind belief in clinical trials with one number...fit all.Moreover how much a doctor can understand the state of patient in 15 minutes consultations. Doctors opening and closing doors every 15 minutes and giving smiles, strange is this profession where patients crowd like animals...waiting...

I am lucky with non agressive advanced PC.

At age 70 in 2010 my PSA was 3...Then I did my PSA in may 2019 which was 30. Diagonostic advanced oligo metastatic GL 8 and 2 spots in pelvis.

I was happy that I lived 2010 to 2019 care free with all sexual life and no stress....

I took all scans to include Choline pet scan...PSMA not much used in France.

Anybody may comment if I should have PSMA as Choline is clean.

I did SBRT nov 2019 and radiated two tiny spots as well. Took Firmagon from June 2019 for a year then switched to Luperon 3 month shot which I did for each 4 and 5 months. I will stop Luperon in march 2022...had no side effects , hot flashes

no problem if you look at them as not me, possible sexual life if my wife and myself use mental phantasy to create new erotic circuits by evoking how it was long ago.

Key is mental set up...

intermitten fasting 14 hrs a day,

Diet low carb, no sugar, no meat, vegetables and fish, wine French grass fed goat and sheep cheese

Walking 1-2 hours every day mainly uphill

Supplements melatonin 3mg, atorvastatin 10 mg, metformin 500mg , tadalafil 2.5mg

Mindfullness....In ZEN I am just the mirror, things happen but mirror stays clean.

PSA since 2 years < 0.006

My ONCO joked that if he tells all this to his patients, they will walk away.

Right now I am working on epigenetics where we can switch on and off our genes and every disease is curable if I know the cause.

The tools are QOL...fasting ,diet,mindfullness, exercise...

Excellent books by Kara Fitzgerald Younger You (epigenetics), Methyle donors and DNA methylation adaptogens

and by Dayan Goodenowe Breaking Alzheimer's( Plasmalogens and supplements)

and what about telomeres with TA 65

Wish all our family members a positive life style .....We need to take care of our health ourself...traditional medicin is just one part of this lifestyle.

Farmhand profile image
Farmhand in reply to LearnAll

Amen

Farmhand profile image
Farmhand in reply to LearnAll

Amen brother

Howmuchisthefish profile image
Howmuchisthefish

Hi, whats your psa now? My dad was diagnosed with nearly 4k psa over 5 years ago. Hes back at 4k now... for my dad it has been a very good indicator of progression. So for him... higher it gets... worse he feels and more pain etc... He is waiting to get on his 4th clinical trial. My dad has had a few raised in psa's in the past as you can tell from my info. But pain etc is not immediate... it does take a while for him to show symptons even with a rising PSA. I would say for most with high psa count at diagnosis it is a good indicator of progression.

tango65 profile image
tango65

I think PSA trends and the PSADT are important but the therapy should be guided by changes in the imaging of the cancer. In any treatment you do not stop a medication and start a new one unless there is radiographic progression of the cancer.

timotur profile image
timotur

This study compares PSA-V (velocity) and PSA-DT (doubling time).

ncbi.nlm.nih.gov/pmc/articl...

Conclusion

In summary, these data suggest that pretreatment PSAV is a useful marker for the presence of life-threatening pCA. In our cohort, PSA DT was not significantly associated with life-threatening disease unless cases were selected with a rising PSA.

The PSA at diagnosis is such a powerful predictor of outcomes and is so closely correlated with PSAV that it can be difficult to statistically separate their effects [15]. This does not mean that PSAV does not provide useful information; rather, it suggests that both parameters may offer more information in specific populations, and PSAV may be particularly useful years before diagnosis at a time when PSA is low. In contrast, PSA DT was only useful if negative values were excluded (approximately 25% of the study population), highlighting the difficulty in applying this parameter in daily clinical practice. It is noteworthy that the addition of PSAV to the base model led to a statistical improvement in the concordance index using a bootstrapping approach but not with the method of Hanley et al [10]. Nevertheless, numerous methods are available for comparing concordance indices, and some believe that the Hanley [10] approach may be inappropriate for testing diagnostic accuracies [16].

Costarica1961 profile image
Costarica1961 in reply to timotur

Very helpful info.

None of us who are dealing with this terrible disease should ever forget that we are each our own best advocate.

Whether any of us know, or not, what our PSA value really means, we can not deny its importance nor significance. Especially for those of us who have been dealt a bad hand, by having a genetic mutation (like BRCA2) potentially causing a more aggressive variant of this disease. Knowing your PSA is just as important as knowing your scan results. They go hand in hand. Let us all fight as hard as we can, and keep on fighting until we find an effective treatment. If one doesn't work, move on to the next one and the next and the next.

Costarica1961 profile image
Costarica1961 in reply to HopingForTheBest1

Couldnt agree more.

in reply to HopingForTheBest1

Being your own advocate is one thing. There are a concerning number of people on this site that are directing the treatment decisions to the point the MO is just a signature. I finished my initial treatments and hopefully I don't need any more for a long time. I'm now reading what the latest treatments are for men in my situation; mostly from the experiences from other men like yourself.. Compiling a list and reading deep enough so I understand the science behind the protocols and medications. What I am not doing is scouring pubmed. There is a tremendous misapplication and misinterpretation happening.

HopingForTheBest1 profile image
HopingForTheBest1 in reply to

That is clearly why we need to get second opinions to verify, or not, our own research findings.

j-o-h-n profile image
j-o-h-n

Please Stop Arguing....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/19/2022 12:04 AM EST

SteveTheJ profile image
SteveTheJ

Do you have cancer or not? If you don't, uh, nevermind....

SUPERHEAT12 profile image
SUPERHEAT12

I never had a very high PSA but am a Gleason 9 (5+4). Had metastasis to the bones. Seems better now with one exception in my hip. Dr. Myers told me that very aggressive cancers do not always produce high psa and that I needed basically to be undetected.

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