I Lost My Less Than Sign

So my signature is updated, and its not good news.

Jan 2021 I was <0.02
April 2021 I am 0.07 with a T of just 134.

I don't know if you can do doubling time based on uPSA data but assuming I was 0.01 in January, that means just about a monthly doubling time.

Will be looking for Medical Oncologists in the Philadelphia area. Any recommendations? Johns Hopkins and Sloan Kettering are about two hours away so they aren't out of reach by any stretch of the imagination.

I just went through all 538 actively recruiting prostate cancer clinical trials on clinicaltrial.gov and found 13 that might apply to me (both imaging and intervention). I was saddended by the lack of trials for people in this in between stage.

Actually, I'm just saddened.

Stephen - I would not worry about doubling time with such small numbers. In fact, I would probably wait until your next PSA before worrying about anything. With a similar history to you, I get the 0.10 PSA results and am fine with not knowing what the small numbers are doing. If you think like I do, the next step is for the long haul and no reason to hurry it along. It probably makes sense to let the PSA rise, if that’s what it’s going to do, until you can get a scan that might show the source of the PSA increase for a chance of it being localized and treatable. Your PSA might also stabilize, you never know... think positive...

As halbert noted, lots of good resources nearby when the time comes.

Ditto to NOT doing anything yet.

Did you get the test at the same place you always go to?

Stephen,
I know from personal experience how very disappointing it feels when it appears that initial treatments failed -- though it's a little early to know for sure in your case. If the PSA continues to trend, some good news is that the treatments you have done aren't for naught. My belief is that the de-bulking of the primary tumor is advantageous.

I don't really have anything to add to Mumbo's good observations. Just hang in there. Even in the worst case scenario you still have long, long ways to go.

Steve N Dallas said...
Did you get the test at the same place you always go to?

Yes. There is a Quest a mile or so from my house.

Thanks also to everyone who calmed me down about doubling time on upsa tests. I am a rank newbie.

Pratoman....good to know about T levels as well.

I was working under the assumption that once I broke through non-detectable on a upsa test my goose was eventually cooked particularly after RALP/Radiation/Lupron. I know I am not going to die tomorrow from PCa, but I wanted to die 30 years from now from a heart attack or a stroke or pneumonia like everyone else.

It seems like I need an adjustment in expectations. Are you guys saying that with upsa tests I am setting myself up for moments like this? If so I will definitely switching to the standard PSA test (<0.1). In a post from a few weeks ago I noticed Djins goes up and down, but somehow that didn't register in my mind as to what I would do if that happened to me because I see the entire history of it all at once. I also noticed that none of the clinical trials I found wanted to hear from you until you went over 0.2.

I already had a followup with the surgeon scheduled for next week. I sent him a note today and asked him if he wanted me to retest, and I also asked him for the MO at Fox Chase he would recommend. I looked at the bios of the MO's on their website for publications and I didn't see things that looked very prostate cancer specific unless I am reading the publication information incorrectly. Lots of renal cell carcinoma etc...

https://www.foxchase.org/clinical-care/conditions/prostate-cancer/care-team

So I did SOMETHING today.

but I have to tell you guys I had a miserable day yesterday, and it is continuing today. I am thoroughly distracted. Today when people at work asked that innocent 'So how was your weekend?" or "How's it going?" I wanted to scream from the top of my lungs "Its still there!", but I just smiled and said "fine". Right now, this minute, I am not mentally fine. It feels way worse than the original diagnosis because at that time I had lots of confidence I caught it early, and lots of different options to squash it.

Still....there is PSMA Pet and maybe there is a nearby hot node they can zap. There were also a number of interesting clinical trials involving BCR kinds of cases as they are trying things that showed some promise for the men in later stages...just earlier.

All of those things need to be discussed with an MO though. So finding an MO is my focus.

Hey Stephen S, I went to the same RO for SRT that you went to at Fox Chase. He wanted the uPSA, I said nope, give me the regular one that just tests to .1. I didn't want to get worked up following such low numbers since I knew I wouldn't be doing any further treatment until my PSA went much higher than .1 anyway. An MO might not be a bad idea, but even with one, you will most likely not move onto further treatment for a long time.

Steven, you are far, or in some cases, very far, fom the PSA eligibiity requirement in those studies. I think the reason you are not finding studies for you now is that you are below BCR and well below the sensitivity of newer scans. Keep in mind that JHU originally proposed a PSA of 0.4 for BCR (for post-RP men) before most institutions settled on the 0.2 that is the most commonly used definition. As I have mentioned, I believe the PSA "sweet spot" for Ga-PSMA/PET is 0.75, which balances the tradeoff between early detection and a dectent chance of picking up existing lesions.

To me an "inbetween" PSA would be something like 0.10 - 0.15.

As others have mentioned, the first problem with jumping the gun with early or very early salvage treatment is that it is unnecessary overtreatment for all those men whose PSA would otherwise plateau before reaching 0.2 and rising. The second problem, if RT is planned, is where to irradiate, since the location(s) involve guesswork.

Djin

Djin said...
Steven, you are far, or in some cases, very far, fom the PSA eligibiity requirement in those studies

Yes but yesterday I was convinced I had a doubling time of about 5 weeks.

Its still an interesting list and others might find it useful.

Stephen, i get your fear. First, though, its worth noting that fear is not constructive, its destructive.

More to the point though, you are really very far away from the point at which panic would be justified. Extremely low PSA, no demonstrable trend. Yeah, you may need further treatment down the line at some point. But its likely to keep the beast at bay for a long time.
Try to keep it in perspective. I know its hard and in fact, i understand your feeling that this is worse than the initial diagnosis. I felt the same way when i lost my < after surgery. So get it. But its highly likely that while this may be a pain in the ass at some point, its highly manageable for a very long time and you may well die of a stroke like everyone else (careful what you wish for LOL)

I'm with you, feeling your distress. Breathe.

SP that’s some good advice

Hello, Stephen S. ~~~

If we would have grown up in the same hometown, we would have been in school together --- same age range.

I have several close friends, my same age, who stand alongside all of us as "battle brothers" who were also diagnosed with prostate cancer. My dad and my uncle are also prostate cancer patients.

Cards on the table --- all of us have experienced PSA worry, fear, and anxiety.

So --- I want you to know, you are not alone.

One thing I have learned, over time --- that little lab number, above all the others ones given to us in our lab reports, seems to be what we all FIXATE on the very most.

One little uptick can send a fellow into a tailspin of worry --- and one little downturn can make you feel like you want to go dancing in the street, when you walk out of the clinic. Do these emotions sound familiar?

One of my friends says, "It's unbelievable how much those little numbers can 'make or break' my whole day."

That being said --- for my case, my oncologist has me run labs, every month, like clockwork.

Because of that, I begin to see the little fluctuations, every month --- which are literally just 30 days apart.

It has taken some time, and some thoughtful words of wisdom from my oncologist --- but he has taught me that I need to EXPECT fluctuations, from time to time --- and from month to month.

Our lab levels are a snapshot in time --- and other components of our lab work also show fluctuations, so fluctuations are part of the game with PSA tests, too.

Sharing this with a comrade is easier than REMEMBERING this for myself, sometimes!

One thing that works for me --- and all of us are different --- I no longer check my patient portal in advance when the lab results come through.

For me, I have my oncologist share results, in person --- so that he can put things into context. He has taught me that in the "undetectable" range, below 0.10, there are bound to be those little fluctuations --- and that things can downtrend the next time or two.

It has happened to me, countless times --- which I see often, due to the monthly PSA tests.

My lesson learned? There's bound to be PSA fluctuations, from time to time, that are just part of the game.

There's difference between those fluctuations --- and TRENDS, which our doctors will note for us --- when and if the time comes.

You're remaining vigilant --- and proactive --- ALWAYS very important --- and you've got your doctors there to guide you.

For me --- my daily walks after work are important --- they help take away the stress of my busy day --- and help take away the worries and anxieties that all of us have experienced, along the way, as medical patients.

There's something about getting outside that can really lift your spirits --- and I'm thankful that you took a walk recently and found benefit in it, too!

On weekends, I head out to explore walking trails and hiking trails in county parks, state parks, and area lakes --- good for a fellow's soul.

Just wanted you to know you are not alone --- we're all walking alongside each other --- and sending you a few of my experiences to let you know I understand.

I have found there's wisdom in the old adage "one day at a time" !

Here's to a good day ahead, from a fellow traveler who walks alongside you ~~~
CYCLONE ~ # Iowa State University