Looking ahead: I have an appointment... - Advanced Prostate...

Advanced Prostate Cancer

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Looking ahead

Jmr11820 profile image
17 Replies

I have an appointment with my urologist next week for my 4 month PSA check. You can see in my bio that I finished adjuvant RT a year ago after DECIPHER confirmed me as high risk. My last 2 PSA’s (4 month intervals)have been 0.00, but for some reason Im feeling particularly uptight about this one creeping up. PSA has never been above .03 since surgery in 2019 and was .01 six weeks post surgery. So, I’m thinking ahead of questions to ask in the event PSA has changed. Thus far I’ve never had a MO and never had any type of ADT. At what PSA point do I consider treatment options, possible genetic tests, scans, etc? Checking PSA every 4 months is nerve racking, for me, without a road map of next steps. Or do I simply continue to monitor PSA until it reaches some arbitrary value….05 or .1? Any advice is appreciated.

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Jmr11820
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17 Replies
Tall_Allen profile image
Tall_Allen

Aren't you cured? Why would you do anything other than monitor PSA? There is no value in "looking ahead" and scaring yourself with fantasies.

Jmr11820 profile image
Jmr11820 in reply toTall_Allen

I hope so but whoever knows. Especially when the genomic results refer to circulating tumor cells. That said, I’ll take your advice and try to not focus on it so much until something says I need to. But, what is the magic PSA number where the most sensitive scans become useful….05?

Tall_Allen profile image
Tall_Allen in reply toJmr11820

The approved PSMA PET scans will detect recurrent cancers in half to ¾ of men at PSA in the range of 0.5-1.0 ng/ml

Jmr11820 profile image
Jmr11820 in reply toTall_Allen

Thanks Allen.

London441 profile image
London441

I had surgery in 2019 also, followed by an aggressive clinical trial of adjuvant treatment including RT. Off ADT for most of a year, so far so good.

Personally I wouldn’t be cruising without a MO but that is strictly me. Avoiding ADT is always nice if it works, but if you have a recurrence will you regret it? Should you pursue scans, more testing, super sensitive PSA, all while having those nerves ‘wracked’ as you edge closer to each PSA test?

I think you know the answer to this. You made a treatment decision, live with it and enjoy your life! You’ll have every opportunity to consider options for further treatment in the future should you need to.

Any time you spend worrying about what might happen is never worth it.

Jmr11820 profile image
Jmr11820 in reply toLondon441

Curious…. what was your highest and lowest PSA since your surgery.

London441 profile image
London441 in reply toJmr11820

PSA at diagnosis was 16.1 T3bN1M0. Surgery 6/6/19. Undetectable at 8/16/19 and since.

Jmr11820 profile image
Jmr11820 in reply toLondon441

Meaning less than .1? Is that how your doc defines undetectable?

London441 profile image
London441 in reply toJmr11820

<0.1 yes. I asked about super sensitive scans and he said unnecessary, same for every 30 day PSA tests.

His position is that closer monitoring than I’m doing would not reveal anything that would change his treatment approach in the event of any BCR.

Justfor_ profile image
Justfor_ in reply toLondon441

This is typical SoC. If/when your PSA gets to 2.0, some docs wait until 4.0, ADT will be administered.

London441 profile image
London441 in reply toJustfor_

Yes sir. I’m not necessarily a SOC person, but it makes sense for me on this.

Having already bludgeoned myself with adjuvant therapy after undetectable PSA post op, I’m either cured or taking a break, hopefully a nice long one.

No watching PSA for microscopic increases monthly for me at this point.

in reply toLondon441

Run wih the wind , London is calling! I pray that you never see APC again . However , it Wouldnt hurt to check ye ol Psa once in awhile to be cautious . But great move for now in not stressing for minute measures . Live healthier than ever before . 🥳👍

London441 profile image
London441 in reply to

Thank you so much! I’m checking the PSA every 3 months… not checking it at all oof I can’t compete at that level 😀

Checking PSA monthly is becoming more and more common as you know, never mind the super sensitive PSA tests…I can’t see it myself.

The basic risk is going with the premise that the PSA isn’t going to do anything in 1 month vs 3 that will change my approach.

If it starts to rise, do I start watching it monthly then?

It’s not then it’s now! I don’t think about that one bit.

Thus I don’t get PSA every 30 days, I’ll take the scanxiety at 3 month intervals instead. To each his own.

Scanxiety….did I just make up a word?

Stay strong Lulu700 and thanks again for the support.

in reply toLondon441

I think 3 months is good . I’ve done that for over six years myself . 5 1/2 clear of pc . And I started out in sad shape .. Good luck🍀

London441 profile image
London441 in reply to

5 1/2 years! Superb! How sad was your shape, may I ask? What treatments?

London441 profile image
London441

Unbelievable. We all get called survivors, you’re the real thing. May you prosper and thrive for many, many years to come.

in reply toLondon441

Thank you Sir , you as well.

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