ADT or Wait: Hi everyone Had my fourth... - Advanced Prostate...

Advanced Prostate Cancer

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ADT or Wait

Alinur profile image
15 Replies

Hi everyone

Had my fourth 18f PSMA PETCT . I had Cyberknife on 2 spots in April last year:

Spina iliaca and T5. In October 2018 my PSA started to rise from my usual <0.003 to 0.007,0.013 and just one day before PETCT ...0.028.

The result was remarkable.no PSMA uptake no where!! The two radiated spots are fully regressive and show no sign of disease.

I Think there might be more Mets which the PET CT can't detect yet.The question is what is my approach to this rising PSA? Need your experiences.

Wish you well all.

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Alinur
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15 Replies
Tall_Allen profile image
Tall_Allen

Have you discussed ADT with your oncologist?

Alinur profile image
Alinur in reply toTall_Allen

Allen,

my oncologist is "whac-A- mole" type. He believes that my cancer can be controlled by robotic radiation for a long time.But my rising PSA after my first Cyberknife experience and the cost of treatment make me try other things.I don't really know what!!

Tall_Allen profile image
Tall_Allen in reply toAlinur

You have to treat what you can't see. I don't know if "whack-a-mole" has any survival benefit (neither does your oncologist), but I do know that ADT does. I think many "whack-a-mole" enthusiasts make a logical error: there is no doubt that larger mets put out more PSA, and SBRT provides good LOCAL control of those larger mets; but what of all the thousands of systemic micromets that can't be seen? So the effectiveness of such treatment (i.e.,whether it improves survival) can't be measured by PSA.

Alinur profile image
Alinur in reply toTall_Allen

Allen,

All what you say is logic and I remember last year before my SBRT you advised me the same approach.......systemic treatment for metastatic PC.what worries me is how long it will work having already 3 IADTs.Moreover in the country where I live, doctors are not allowed to do combination of medicines..i.e ADT+ ZYTIGA(Stampede)

I will discuss with my doctor to start again ADT .May be Casodex only for some time. I hope with such a low PSA & no visible mets it may work!

What do you think?

Tall_Allen profile image
Tall_Allen in reply toAlinur

I think it depends on whether you want to stay on iADT to give yourself a vacation from hormone therapy. Because you have artificially lowered your PSA, you will have to use bone scans/CT as your guide to radiographic progression. I agree with GP24 - switch to a conventional PSA test.

Alinur profile image
Alinur in reply toTall_Allen

Thanks TA.

Alinur profile image
Alinur

Thanks Nalakrats,

I was on IADT for 3times...one year each.I don't know how long it will work for me and once you become resistant to my opinion, it's hard to control this disease! May be DES is an option.

GP24 profile image
GP24

Allen and others recommended to you in the past not to get these ultra sensitive PSA tests done. If you would do that your PSA value would be undetectable and you had no reason to worry.

Alinur profile image
Alinur in reply toGP24

Thanks GP24,

If your cancer is systemic and having no prostate TMO Whatever you use ultrasensitve or not if your PSA starts to rise it always continues that trend until you stop it with some kind of treatment.

I have this experience many times using ultra-sensitive tests.At 0.7-- rising from <0.003 the PSMA PETCT found 2 lesions.

Alinur profile image
Alinur

Nalakrats,

It's in my plan,but I don't really know what I have to ask for PC .they told me they map over 700 genes.In Germany off course.please give details if you have any.thanks.

Alinur profile image
Alinur

I live in Romania, but Ido my treatments in Germany .now I am in Cologne where I had 18f PSMA PETCT this week.

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

I just did a google translate of WhacAmole to Romanian and what

i got is whacAcârtiță.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/02/2019 1:30 AM EST

Alinur profile image
Alinur in reply toj-o-h-n

Approximately, John but a good start of learning Romanian.you have your teacher here...no charge.

You are a wonderful community.I wish I would've met personally everyone of you.

Multă sănătate!.....first lesson!

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

Râsete bune BTW all us here are Hungarians....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/02/2019 10:50 AM EST

You do know that there are other sources that produce PSA; like adrenal glands, right? I am sorry , but in my experienced mind, the creation of stress is doing more to affect “nonexistent” problems. Your husband is currently considered undetectable with a <0.1 PSA. I do not know an Oncologist anywhere that bases treatment decisions on anything less.

He may have Prostate Cancer, but it is way too early for concern.

Gourd Dancer

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