Looks like I overreacted : A few weeks... - Advanced Prostate...

Advanced Prostate Cancer

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Looks like I overreacted

Canoehead profile image
17 Replies

A few weeks ago I posted my concern and a question about the fact that my latest PSA had “doubled” for 0.01 to 0.02. Some of the responders told me in a nice way to get a grip. Today my MO told me the same thing, but not quite as gently as you folks did.

In his mind anything under 0.05 is functionally undetectable. He also said that even after heavy radiation, some healthy prostate cells could have regenerated, causing the detectable reading. He also said that at 0.10 he would listen to my arguments about resuming ADT, and at 0.20 he would order a PSMA pet scan. He was not interested in increasing the frequency of my blood testing (currently every 90 days), but he would include an E2 test with the usual battery that I get.

So I feel pretty silly for having been as worried as I was. My doctor certainly wasn’t, and that is reassuring.

So with that out of the way we are off to Europe for 2 weeks on a trip that has been delayed for 2 years by Covid. I will still check in with you all on a daily basis.

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Canoehead profile image
Canoehead
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17 Replies
Boywonder56 profile image
Boywonder56

No need to feel bad ....its part of the angst that comes w the disease... enjoy europe☘🇺🇦✌

lewicki profile image
lewicki

That's for sure.

rosatt1 profile image
rosatt1

Interesting I was a prosecutor diagnosed with Gleason 9 2020 put on Firmagon and had EBRT PSA when last tested was <0.01 so I am interested in your PSA.

Bon voyage Canoehead ! Please send us a pic ? A relative has been there for several weeks and having great fun . Some prices are up however . Good luck travelers! 🤙🏽🥳🥳🥳

Canoehead profile image
Canoehead in reply to

Do you want pics from Netherlands, Germany, Austria or Hungary? And how much will drinking those great Rhine-Mosel wines hurt my disease? I’m hoping not too much, because I hope to crash Scout’s 103rd birthday party.

When I was younger I believed in the play hard, party hard motto. A slightly revised version for all of us now might be fight hard, live hard. Even without PCa the clock is ticking on all of us, so let’s make hay while the sun shines.

Almost 5 years with this disease, outlived my first doctor’s expiration date, and I am just now starting to get it. Lots of people here to thank for that positive energy.

Nusch profile image
Nusch in reply toCanoehead

Enjoy your trip and always welcome your messages. As I‘m Austrian: especially enjoy my home country while we are sailing in Croatia. Your bio has a lot of similarities with mine, so let’s keep on fighting hard. Life’s short and we should make the best out of it. Bon voyage and Croatians say: sretan i siguran put!

Scout4answers profile image
Scout4answers in reply toCanoehead

Even without PCa the clock is ticking on all of us, so let’s make hay while the sun shines.

You know I subscribe to this prescription. see you at the party...

So glad it is working out and that your stress level has dropped. Enjoy the trip.

ARIES29 profile image
ARIES29

My PSA went from 0.38 to 0.48 in 4 months & I was told not to worry & take another 3 months off from Firmagon.

Muffin2019 profile image
Muffin2019

Enjoy your trip, it will get your mind off the disease.

Magnus1964 profile image
Magnus1964

Things are getting down right nasty.

EdinBmore profile image
EdinBmore

Anxiety and fear of the "what ifs" are a part of this (and perhaps all) diseases. Better to express your concerns/fears/questions and get a response than to worry (perhaps needlessly).

Have a f-ing blast in Europe! I'm envious! LOL

EdinBaltimore

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

Sit down, take the canoe off your head and enjoy yourself...... see ya in the movies.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 06/11/2022 1:42 PM DST

cesanon profile image
cesanon

Don't worry about overreacting.

But keep doing monthly PSA tests.

It's not about the absolute value of the PSA it's about the trajectory.

You need to test monthly to get a good read on stability vs trajectory.

Then you make decisions.

Bcgkelly profile image
Bcgkelly

Enjoy Europe, living her I think we are really nice people 🤣. I think 0.2 might even be a bit low for a PSMA scan. I’m being told they won’t do it until it reaches 0.5. The chances of it finding cancer at 0.2 will be low. Also PSA can bounce around the 0.01-0.02 level for a few years in some Men. Enjoy the present and try put it from your mind until you need to deal with it.

onajourney profile image
onajourney

Have a wonderful trip. Don’t worry about “silly” questions. Our physicians forget that we patients have fears and worries that make it difficult to be objective about doubling numbers. I reacted exactly like you did about a year ago. Bon Voyage!

Grandpa4 profile image
Grandpa4

I think the lower limit of detection should be 0.05. These numbers between 0 and 0.05 only cause anxiety. One way of looking at this is that none of us is ever really a 0. If you had a sensitive enough assay we would always be positive. My facility only uses the less sensitive assay for this reason.

StayingOptimistic profile image
StayingOptimistic in reply toGrandpa4

MSK only report the minimum value is : <.05

They don’t report anything lower than that.

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