How can I be sure that cancer is not ... - Advanced Prostate...

Advanced Prostate Cancer

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How can I be sure that cancer is not progressing

traveller64 profile image
29 Replies

Dx 10 years ago, had surgery and radiation therapy. Path report showed Pt3b, SVI, gleason 8 with tertiary 5. Psa recurrence 5.5 years ago, treated with only Casodex since then. PSMA pet scans at time of recurrence and 2 years ago showed no mets. PSA was below 0.3 since recurrence. Recent PSA 0.033 with Casodex 50 mg/day.

I’m so grateful that my disease is controlled by medication with relatively lesser side effects. My question is how am I going to know if cancer progresses before it’s too late. So I want to know if my knowledge is correct or not. Appreciate your comments:

My PSA is under control with hormone therapy (casodex), PSA is low and stable. I guess there are two probabilities:

1) Cancer is still hormone sensitive and under control

2) Cancer has evolved into NEPC or any other tumor that does not produce much PSA. Cancer is progressing but there are no symptoms yet

How do I know that I’m safe and first probability is valid?

What scans and blood tests (other than PSA and testosterone) can I get to rule out the NEPC?

many thanks

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traveller64
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29 Replies
GP24 profile image
GP24

I checked the CGA and NSE values for a possible risk of NEPC.

pubmed.ncbi.nlm.nih.gov/258...

netrf.org/for-patients/nets...

pubmed.ncbi.nlm.nih.gov/925...

sciencedirect.com/science/a...

traveller64 profile image
traveller64 in reply toGP24

Thanks a lot

LearnAll profile image
LearnAll

This is what I will do:

Check PSA, ALP, CRP, CBC and CMP. (blood tests)

I will also do Chromogranin A , a test for checking Neuro-endocrine change, if any. This blood test is abnormal in about 60% patients. if neuroendocrine type present. If it comes high, we might have to consider other tests.

I will also check LDH which comes high in Neuro-endocrine situation. It gives a clue.

SCANS :a whole body MRI to rule out bone and visceral mets,if any.

traveller64 profile image
traveller64 in reply toLearnAll

Thank you. So MRI would show any kind of tumor, right? I guess it will catch tumors larger than 0.5 cm. Which one is better; whole body MRI or FDG PET/CT?

tom67inMA profile image
tom67inMA

Scans are about your only defense against NEPCa. I developed it with PSA <0.01, ALP <60, and Chromagranin A at the upper end of the normal range.

That said, don't get paranoid about it. I'll be getting scans every three months or so to check for recurrence, but not sure I'd recommend that for everybody. You've already lived 10 years since your original diagnosis, so that would be 40 CT scans which is a lot of radiation, and certainly a lot of yucky barium drink.

traveller64 profile image
traveller64 in reply totom67inMA

Do you get FDG PET/CT or any other scan?

LearnAll profile image
LearnAll in reply totraveller64

I will be satisfied with MRI only just to screen for visceral/bone mets. Just for peace of mind.

The problem with super sensitive scans such as FDG or Ga68 is that they might show very very small bunch of cancer cells which really are not relevant as you might run the risk of unnecessary,over-treatment. We need to balance risk-benefit of having such scans.

tom67inMA profile image
tom67inMA in reply totraveller64

So far I've been getting CT scans, with the exception of a normal PET scan (NEPCa metabolizes sugar) to verify the prostate was the primary tumor.

Tall_Allen profile image
Tall_Allen

#2 is kind of outlandish based on your history.

traveller64 profile image
traveller64 in reply toTall_Allen

Thanks Allen. So if PSA continues to be low and stable, is your recommendation to check PSA and do not get any other blood tests and scans?

Tall_Allen profile image
Tall_Allen in reply totraveller64

Yes. NEPC is rare, increases in heavily treated men, and there is no reason to even suspect it for you. You are lucky that your cancer responds well to minimal ADT, and you have no apparent occult metastases.

LearnAll profile image
LearnAll in reply toTall_Allen

In heavily treated men for many many years, approximately 20% people might get neuro-endocrine differentiation. Even among these men, the degree and extent of NE differentiation varies. Some are mild and some not so mild.

Only 0.8 % of all Adenocarcinomas start with Neuro-Endocrine subtype...This is how rare it is .

Tall_Allen profile image
Tall_Allen in reply toLearnAll

The OP is neither heavily pretreated nor detectably metastatic.

LearnAll profile image
LearnAll in reply toTall_Allen

Then , no worries.

Tall_Allen profile image
Tall_Allen in reply toLearnAll

That's what I said.

tom67inMA profile image
tom67inMA in reply totraveller64

To clarify my earlier response, both my oncologist and my urologist believe I've had some NEPCa all along, which happens about 1% of the time, as my original cancer never quite acted like normal prostate cancer.

in reply totom67inMA

As far as I know, NEPC is very rare with an undetectable PSA. I mentioned NEPC it to my doctor and he said it would be highly unlikely since my PSA is undetectable too. But I guess is does happen rarely. Did you also have soft tissue mets?

tom67inMA profile image
tom67inMA in reply to

Yes, new mets in my bladder and liver that weren't there at my original diagnosis. Hopefully they'll be gone after chemo. A scan after my second cycle showed significant shrinkage.

wagscure259 profile image
wagscure259 in reply to

My MSK MO echoed the sentiment that NEPca is rare , and he hadn’t ever seen that development, in a patient with an undetectable PSA( which is where I also sit)

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

Look at it this way. I was sure I would never divorce my first wife..............

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/26/2020 7:08 PM DST

addicted2cycling profile image
addicted2cycling in reply toj-o-h-n

47 years in 5 days and it WILL BE UNTIL DEATH. She has all the $$$ and I don't mind being a "kept around eunuch" ;0)

j-o-h-n profile image
j-o-h-n in reply toaddicted2cycling

Since she has all the $$$ I think you should change your ID to addicted2siphoning...

Happy 47th.... Well you can't go out to dinner to celebrate now... so order in a dinner for two (make sure she pays)....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/27/2020 5:08 PM DST

monte1111 profile image
monte1111 in reply toj-o-h-n

I guess she insisted.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

With my hands around her neck.... she didn't have much of a choice...........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/27/2020 5:11 PM DST

larry_dammit profile image
larry_dammit

Well not a doctor here but my suggestion would be a full blood panel, then a bone scan with contrast. That would be a great start. I lost my father in law to aggressive cancer 6 years after his surgery, doctor didn’t do tests until to late 😢😢

dadzone43 profile image
dadzone43

You can't "be sure."

As I read your numbers, you are <0.1; ie, undetectable. Relax and enjoy life and your family. Be watchful and have a PSA and T every 90 days. However, do not fret nor worry. You have embarked on a treatment plan that is working for you. We all have varying scope of disease and works well fir you, doesn’t necessarily work for anyone else; and vice versa.

You might have a discussion with your MO on micro-metastasis.

Gourd Dancer

GoBucks profile image
GoBucks

There are no guaranties. You have had 10 good years. Very lucky. At this time you may be more at risk for a car crash, heart attack or some other way to go. I'm more worried about Covid-19. Relax. L'chaim!

ron_bucher profile image
ron_bucher

For me, the relevant question is “What is the probability?” And I wouldn’t rely on any answer that implies “100%”.

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