Reading into psa on lupron: Ive been a... - Advanced Prostate...

Advanced Prostate Cancer

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Reading into psa on lupron

Boywonder56 profile image
31 Replies

Ive been a luprochan for 18 mo. I reached nadir at 7 mo. .007..3 subsequent psa >.01,>.01....now this latest say .01......cause for concern.?.... i thought .02 was bad?...cmon smart guys....

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Boywonder56 profile image
Boywonder56
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31 Replies
Tall_Allen profile image
Tall_Allen

Those are all excellent. You should switch to a conventional PSA test so you don't give yourself so much anxiety.

podsart profile image
podsart in reply to Tall_Allen

When would u use the ultra sensitive PSA test?

Tall_Allen profile image
Tall_Allen in reply to podsart

After a prostatectomy because there is a known advantage to earlier salvage treatment.

podsart profile image
podsart in reply to Tall_Allen

Thanks

rococo profile image
rococo in reply to Tall_Allen

Sometimes I think that anxiety can get some of those dormant pc cells going, otherwise its good to have the lead time of an ultrasensitive psa test. Rocco

Tall_Allen profile image
Tall_Allen in reply to rococo

When the extra lead time leads to a change in therapy, as it may for earlier salvage radiation after prostatectomy, it makes sense. However, when there is no therapeutic advantage to be gained (such as AFTER salvage radiation), it ONLY produces anxiety.

rococo profile image
rococo in reply to Tall_Allen

For me knowledge is power only if you use it. Psa dynamics is a tool even at low numbers for lifestyle changes and contemplating and researching possible future therapies.

Tall_Allen profile image
Tall_Allen in reply to rococo

I don't buy into anticipation - that only causes stress. It is much easier on the psyche to take it as it comes, living in the present moment. I practice mindfulness to help me do that. There is nothing that can come along that requires anticipating lifestyle changes or researching future therapies. You will have more than enough time to acquire whatever knowledge you need when you need it.

Boywonder56 profile image
Boywonder56 in reply to Tall_Allen

I too live in the moment....at the moment my pc is loosing the battle...not me...

rococo profile image
rococo in reply to Tall_Allen

I get lt. Mindfulness workes for me. Thanks for the reminder

Those are very good results, Lupron is doing its thing. Keep up the great numbers!

You are undetectable st <0.1 which is where you want to be. Ultra sensitive testing serves a patient with undue anxiety. Why put yourself thru a meaningless emotional roller coaster. Keep up the great work.

Gourd Dancer

stangoldberg profile image
stangoldberg

It's important not to focus just on a specific PSA. Rather use the PSA and your testosterone level as indicators of where your cancer is going. And as they say on TV, I'M NOT A DOCTOR.

After my prostate gland was removed 15 years ago, during surgery, my urologist found cancer beyond the surgical margin and in the lymph nodes. Based on a Mayo Clinic protocol (could have been Johns Hopkins?) of not waiting until there was evidence of migration to the bone, we immediately stated hormone therapy with the understanding that it's rise or fall would become an indicator when we should: 1) continue 3 month injections, 2) wait until the PSA rose above a certain level for the next injection, or 3) move on to a more invasive protocol.

I don't remember which hormone I started with, but we replaced it with Lupron at least seven years ago. The reference point we used was .3 after achieving an "undetectable" reading. Using .3 was somewhat arbitrary, since neither me nor my oncologist could find any data that would suggest the "best" reference point. We both felt that >.3 was a good starting point: one that was achievable (if the Lupron was working) and low enough we wouldn't be concerned about the creation of tumors with that PSA reading. Getting the PSA below detectable usually took about one year of injections.

I am not suggesting you use the same levels, since supposedly, there are at least 20 different forms of prostate cancer. Consult with your oncologist to determine what makes sense for you.

At least four years ago, we began tracking my testosterone levels. What became apparent very quickly was that whenever testosterone levels fell, so did the PSA. Statistically that translates to a positive correlation (e.g. lower testosterone results in lover PSA levels), which gives me a long-range view of my cancer.

Basically, as long as PSA falls with reductions in testosterone, my cancer remains in check. It's important to understand that once prostate cancer cells run through your body, we aren't looking for a cure, but rather a way of controlling them.

So thinking about PSA in terms of a target for decision making makes more sense than looking at PSA numbers in absolute terms. Go back to the data you or your physician have gathered and see if you can find similar correlations.

As long as your PSA falls after a Lupron shot, I would relax. But if the Lupron does not reduce the PSA, that would indicate to me (remember I'm not a REAL doctor) that your cancer is building up a resistance to the hormone and a stronger intervention step may be needed. Hope this helps

in reply to stangoldberg

Currently on ninety day Lupron. T undectable while PSA went from 52 to 30 to 24 to 29 to 30 to 37... According to my interpretation of your recent post, my PCa appears unmanageable. Return to DF Bos 10/29 for intensive examination. Pls, your take on my situation...

Boywonder56 profile image
Boywonder56

Ty you all for the good input....glad to have the support of this group....just a note i should of put .2 as failure mark...not .02...and just wondering..what the overall survival rate of members is...we hear from those who are still w us...but there has to be an attrition rate...not being morbid but we do have a good control group....

in reply to Boywonder56

You are among the living . Not the dead.. our goal is to extend our stay ...Drs should not give you an expiration date. If they do? Dont believe it. No one size fits all us. We are so different with so many different outcomes and variables... As you said, many of the dire cases don’t make it even to healthunlocked.. If you are walking and talking , there is hope.. Get living on your mind.. You don’t benifit by dwelling on dieing. I’ve been there.. it amounts to a waste of our precious time.. don’t predict your own early demise....... we’ll all get there in time... in between suffering find ways to daily happiness..Exersize is Universally accepted to help most issues. A new way of life, but life none the less.. No cake walk but give it your best shot and you can prove the stats wrong like many others have. Endure as long as we can with hope for new developments.

Doug47 profile image
Doug47 in reply to

I needed to hear that thank you

in reply to Doug47

We all need to hear kind words.. only those that have been in similar shoes can really relate .. APC is a tenacious S O B that feeds on our masculinity . if let be it will eat us up... It almost killed me at the start. I say hit it hard as possible in the first round. If we live long enough it’s going to steam roll us all if something else doesn’t get us first.. Let’s keep it at bay..

Doug47 profile image
Doug47 in reply to

I’m in for that one!!!!

in reply to Doug47

Live well & healthy...

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

Boy oh Boy! Keep on wondering...

Good Luck and Good Health.

j-o-h-n Saturday 09/29/2018 12:36 PM EDT

larry_dammit profile image
larry_dammit

Those are great numbers. Mine are .005. Spiked to .007 two months ago doctor was not concerned. That’s classed as very good

Boywonder56 profile image
Boywonder56 in reply to larry_dammit

Ty.....

GoEZ profile image
GoEZ

I was always told not to worry to much about my PSA number. There are a few things for you to remember:

1- you just went thru changes that have messed with your body, give it time to know your cancer.

2- your numbers are at the lower end of the accuracy of the test. There will be some drift at those numbers. It could be that is where you cycle.

3 -I was told it was the change in the number over time than the number itself.

My bother-in-laws father told me his PSA was above 500. He was trying to calm me down, but as we talked i found out it took him decades to get that high. I would have been there in just less than 24 months. I watch the doubling time for my cancer,even at that it only tells you that something has changed, maybe you medicine failed and you need to change it. My lowest DT has been 42 days. I went from .455 to 23 in a year, these are not big numbers but big changes. For me 90 days seems to be the DT that gets everyone's attention. This is a good site, you will learn a lot. In time you will learn to pace yourself and learn how to handle things better. Good luck

hadleycash profile image
hadleycash in reply to GoEZ

Doubling times are an interesting thing. I believe I would have preferred to have had a higher psa when diagnosed and slow doubling time, than what actually happened, which was fairly low psa throughout but lightening dt. From diagnosis at 3.2, to post prostatectomy at .02, to pre-RPLND surgery at 2.8, my psa doubling has been the exact same. It is just under 1 month, at .9 months! Seems like the Flash Gordon of pc! Any others out there with super fast dt's? I'd appreciate hearing how ther've managed their pc over time... what worked and what didn't. Thanks! BTW, my path gleason was 9.

Doug47 profile image
Doug47 in reply to GoEZ

Thank you

GoEZ profile image
GoEZ in reply to Doug47

Stay on top of it. Remember you are just 1 of many your doctor sees and tracks. They tend to get complacent. I get my PSA check every 2 months, had to fight to get the test but now the doctor agrees with me. This just indicates there are changes going on and you need to stay more vigilant. There are sites that have calculators that will help you track your DT. You will need at least 3 PSA test to get some information. Good Luck.

Doug47 profile image
Doug47 in reply to GoEZ

What’s DT again

GoEZ profile image
GoEZ in reply to Doug47

doubling time.

By this time next year you’ll be helping other new guys with advice. There are thousands of us, we just keep coming. I think it’s an epidemic of cancer on this Earth..

Great results!

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