HealingWell
Search Close Search
☰

6 wk PSA .01 Meaning?

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/9/2016 12:20 AM (GMT 0)
Got my 6 week post-op PSA of .01 today. What's that mean?

Post op PSA's in sigs seems to be everywhere. You'll see everything from no "less than" signs with amounts down to a decimal point in the thousands. Then you'll see "less than" signs of higher numbers like <.04 or <.01.

It's my understanding that less than 1.0 is technically undetectable and below 2.0 is technically still in remission.

I understand the debate of .03 and above being an "HW" hot topic. That's not what I'm after.

I'm assuming that anything measurable below 1.0 can only be measured by an ultra-sensitive test. Is this a false assumption?

I understand I had an ultra-sensitive test. But....wouldn't a "<.01" have been better than just a ".01"?

Do different ultra-sensitive labs report their findings differently?
Posted 1/9/2016 12:24 AM (GMT 0)
it means you're thinking too much.

PARTY TIME.

Andrew
Posted 1/9/2016 1:03 AM (GMT 0)
That number is what you have been wanting to see
Posted 1/9/2016 1:13 AM (GMT 0)
That's my thinking too Andrew.

With this positive margin, I am sending my slides to Dr. Epstien to get his take on things. The best I've been able to tell from my readings is that this margin gives me about a 45% chance of BCR. ART is supposed to reduce that figure. (He'll obviously know more than I do about this). If one waits to see if their PSA does in fact rise, then SRT doesn't give the same chance for cure than if one just went ahead and had ART with PSM right outta the gate.

It should prove an interesting discussion with him. But...from where I sit...he'll need some overwhelmingly hard data to convince me that ART is the way to go.

(Or, for that matter, SRT...if the PSA begins to rise).

I went with the herd once. I'll not make that mistake again LOL
Posted 1/9/2016 2:03 AM (GMT 0)

island time said...
Got my 6 week post-op PSA of .01 today. What's that mean? ..........

It's my understanding that less than 1.0 is technically undetectable and below 2.0 is technically still in remission. .............................
I understand I had an ultra-sensitive test. But....wouldn't a "<.01" have been better than just a ".01"?

Do different ultra-sensitive labs report their findings differently?

I'm sure you meant < .1, not <1. So, yes, anything < 0.1 is considered undetectable by the standard PSA test. And that is the number that, when you rise above it, you may be recommended for further treatment, I think that is the standard most practitioners are still going by. Some still consider BCR(biochemical recurrence) as .2, or >.2.

But of course, if you have .01(like my last one, finally up above <0.01 to .01) it is detectable, though extremely low. So a couple of studies show that if you get to .03 or above, it is very likely that later on- who knows how long but probably with in a couple of years- you will finally reach te magic # of 0.1(ten times higher than your current) So based on the likelihood of finally having BCR(recurrence) if we ever break the .03 mark, some people are choosing to get a head start and not waiting to get all the way to .1. They are getting maybe a year or so head start.

So yes, <.01 is even better than an extremely low 0.1. But that is not very important in my mind, all that matters is your future course. So your next one may go up, or remain the same, or even go down(yes, it happens).

Also, just for general way of looking at it,
1: unlike me(G9) you have the lower risk 3+4=7, with a fairly low PSA, pretty low risk.
2: a positive margin is not huge at predicting future course of mets
3: Even if you BCR, that does not at all mean you will ever metastasize

So at least for now, accept the fact that you were .01 rather than .2 or 1 or 2 as very good news. Like the rest of us(welcome to the club LOL!) you will probably be concerned about where it goes- if anywhere- in the future. Here is one study on how much + margins increases our risk. As I said, not huge for mets:
www.ncbi.nlm.nih.gov/pubmed/22901983

Somebody said...
Abstract
BACKGROUND:

Positive surgical margins (PSMs) increase the risk of biochemical recurrence (BCR) after radical prostatectomy (RP), but their impact on hard clinical end points is a topic of ongoing discussion.
OBJECTIVE:

To evaluate the influence of solitary PSMs (sPSMs) and multiple PSMs (mPSMs) on important clinical end points.
DESIGN, SETTING, AND PARTICIPANTS:

Data from 1712 patients from the Centre Hospitalier Universitaire de Québec with pT2-4 N0 prostate cancer (PCa) and undetectable prostate-specific antigen after RP were analyzed.
INTERVENTION:

RP without neoadjuvant or adjuvant treatment...............................

RESULTS .............................
Thirteen patients (0.8%) died from PCa, and 194 patients (11.3%) died from other causes. Ten-year Kaplan-Meier estimates for BCR-free survival were 82% for margin-negative patients, 72% for patients with sPSMs, and 59% for patients with mPSMs (p<0.0001).

Time to metastatic disease, CRPC, PCa-specific mortality (PCSM), or all-cause mortality did not differ significantly among the three groups (p=0.991, p=0.988, p=0.889, and p=0.218, respectively). On multivariable analysis, sPSMs and mPSMs were associated with BCR (hazard ratio [HR]: 1.711; p=0.001 and HR: 2.075; p<0.0001), but sPSMs and mPSMs could not predict metastatic disease (p=0.705 and p=0.242), CRPC (p=0.705 and p=0.224), PCSM (p=0.972 and p=0.260), or all-cause death (p=0.102 and p=0.067). The major limitation was the retrospective design.
CONCLUSIONS:

In a cohort of patients who received early SRT in 70% of cases upon BCR, sPSMs and mPSMs predicted BCR but not long-term clinical end points. Adjuvant radiotherapy for margin-positive patients might not be justified, as only a minority of patients progressed to end points other than BCR. PCSM was exceeded 15-fold by competing risk mortality.

Post Edited (BillyBob@388) : 1/8/2016 7:33:24 PM (GMT-7)

Posted 1/9/2016 2:34 AM (GMT 0)
IT, I'm not sure if the lack of a < sign means anything (I think that's what you are after?). But the fact is, even if it did, this is a 6 week test, not a 3 month test. So I think, at this point, it's nothing to be concerned about.
Did you ask the surgeon his thoughts? Or better, how that particular lab reports? Some labs just don't use the < sign.
Posted 1/9/2016 2:50 AM (GMT 0)
That's kinda what I'm reading.

BCR rates can go up but where it goes from there...The jury's still out.

It's not clear anywhere I've looked that psm has any effect on survival.



I cant even find that SRT or ART has much of an impact. It'll knock the psa down but the "how long have i got?"...it's still unclear it (at least to me so far) that it changes the equation all that much.

Nonetheless. ..everybody sure does it anyway. ..
Posted 1/9/2016 3:18 AM (GMT 0)
Ok, here's a few more confusing things to throw into the mix:

A 6 week test shows the general trend of things, it's NOT the last word. Most docs do a 6 week test, but they acknowledge that the true 'lowest value' won't show up till 3 months.

Also, 0.01 is a great reading, and it may be a true value. Different instruments and different test methods have different low limits. For example, the test my Urologist runs in his office will show a <0.04, because that is as low as his instrument goes. They can't report "0" because of technical considerations, so they report that the lowest the machine goes is 0.04, and it's less than that.

Think about it like this: You have a variety of measuring tools to measure your house. You might have an old tape measure calibrated down to 1/8 inch. You might also have a newer one calibrated down to 1/32 inch. You could also have a set of machinist's calipers that you can read down to 0.001 inch. In all cases, you truly can't measure zero...but you can measure perhaps "a hair less than 1/32" in once case, or 0.003 inches in the other case. Which is "better"?

You're officially in the zero club! Welcome! You get to buy the first round of beers. I'll take a Newcastle Brown, thank you very much.
Posted 1/9/2016 8:01 AM (GMT 0)
The doctor wasn't there tonight. I saw him last Tuesday. That was when the blood was drawn.

I asked the gals in the office if they knew who does the labs. They did not understand what the term "undetectable" means.

The doctor told me he would phone in a prescription for Cialis last Tuesday. That did not happen. He also said my insurance may not pay for it (which the pharmacy said it wouldn't). So the doctor said he would tell the front desk to give me some Viagra if my insurance doesn't pay. That did not happen either. So they would not give me any.

He also told me they would call me with the results of my PSA "later in the week". I called at noon today (Friday) for the results. No answer. Left a msg. To call me. No call. At 4 pm I got in my car and drove to their office for my results. They wouldn't give them to me because the doctor hadn't signed off on it. I said call the dr. They said he's in surgery. I asked where? They did not know the answer to that question. I told them we need to find out where he is and get in touch with him....I've got all night. At that point a pa told me the results.


This is how things have gone on everything the last 6 weeks. It's been a nightmare on Elm Street.

Some of the things that have occurred. ...are absolutely surreal. I can't even type them they have been so bizarre.
Posted 1/9/2016 8:20 AM (GMT 0)
The good news is I am beginning to put on some weight. I lost 15 lbs during all of this.

My belly still hurts. He said Tuesday "That's to be expected given all you've been through".

I don't trust a word a word this man says. He didn't want to send the slides to John's Hopkins. He takes stuff like that personal. Even though I told him before the surgery I was going to want to do that. He still "recommended against it. Lol On the basis that "They're just going to reiterate what we've already said". I didn't have the energy to tell him that the biopsy was changed by Epstien. I just told him to "do it" lol

EDIT: Which he also did not do. There was no order for that in the computer. So I signed the release and gave the girls Epstien's address.

I have every reason to believe that still won't be enough to 'get her done'. I'll have to follow up on that some more next week before that gets done.

Post Edited (island time) : 1/9/2016 1:26:50 AM (GMT-7)

Posted 1/9/2016 8:35 AM (GMT 0)
I know I'm complaining. ...but I'm venting.

He blamed me for the suture coming loose at the bladder neck. I did absolutely nothing that should have caused that.

It's been a mismatch from the outset. He's a guy that takes any request for information personal. And I'm the kind of guy that needs alot of information.
Posted 1/9/2016 8:38 AM (GMT 0)
He didn't give me my post op path report. His PA did. I asked if it was prostate contained. She said she didn't know how to read it.
Posted 1/9/2016 8:58 AM (GMT 0)
It's wasted energy to rehash everything. But I'm getting better. I need my energy to get better. And I need to keep getting better.
Posted 1/9/2016 9:05 AM (GMT 0)
Southern Appalachia has ALOT going for it. It's my home. World class medical care isn't one of them. I should have traveled. I thought I could sneak through. That was my bad.

What's more...what has happened here...it could've happened anywhere. And does.
Posted 1/9/2016 9:10 AM (GMT 0)
I feel better just what I've typed. Maybe it's letting the air out of the secrecy. I don't know. But it makes me feel better. Maybe I can...at some point share some of the worst events.

Lol I think this has left me with some PTSD. LOL
Posted 1/9/2016 12:22 PM (GMT 0)
IT, hang in there. I'm curious, where are you in Southern Appalachia? One of my daughters lives in the western end of Virginia in the New River valley.
Posted 1/9/2016 2:04 PM (GMT 0)

halbert said...
IT, hang in there. I'm curious, where are you in Southern Appalachia? One of my daughters lives in the western end of Virginia in the New River valley.

Knoxville
Posted 1/9/2016 2:31 PM (GMT 0)
IT, a .01 at six weeks is a great number. There are no indications that you need further treatment at this point, or possibly ever. Just heal. That's the only thing you can do right now. As usual some great information from the usual gang.
Posted 1/9/2016 3:35 PM (GMT 0)

island time said...
Southern Appalachia has ALOT going for it. It's my home. World class medical care isn't one of them. I should have traveled. I thought I could sneak through. That was my bad.

What's more...what has happened here...it could've happened anywhere. And does.

That is a "you no what load" of venting there, IT! Good for you, go for it! And it does sound like you have a lot that deserves venting. WTH is with those folks? As for your "my bad", let's face it, it is a major challenge to make the exact right decision in a relatively short period of time after you have just been told you have cancer. Just think about it: we virtually have to become MD specialists in PC and it's risk to us and the pros and cons of it's various treatments and their SEs! How many among us are capable of doing that perfectly unless we just luck out? I men really, how many of us would break a bone, and then argue with our ortho docs about what we think is a superior treatment because of something we read on the internet? Who among us would even think we were capable of making such a decision? And a lot of us don't even find helpful web sites like this until the decisions have already been made or worse have already happened. In retrospect, I am not particularly happy with my choices, but then again I also remember how hard it was- seemingly impossible- to make the decision. If it was that hard to decide(in the midst of my emotions/fear and all kinds of conflicting advice) then the odds were at least even that I would make a choice that I would later think was not the best. So don't beat yourself up too badly if you wish you had done things a bit differently.
Posted 1/9/2016 4:01 PM (GMT 0)

island time said...

halbert said...
IT, hang in there. I'm curious, where are you in Southern Appalachia? One of my daughters lives in the western end of Virginia in the New River valley.

Knoxville

Knoxville, TN is not a small town, and I would think they have some fairly advanced medical facilities there. ( I actually traveled 4 hours to TN/Nashville/Vandy for mine) But some of that stuff you are reporting sounds like total BS or plain old incompetence. (they don't know what "undetetable" means? And the "PA"(usually VERY educated people in their specialty) did not know what prostate contained means? WTH? You are very right to complain about that.

Still, as for your surgeon, it is quite possible that he is a very skilled surgeon and just a total arrogant, tyrant, A hole of a human being. I just retired from 36 years of giving anesthesia for surgeons in many different locations. And I can tell you that many of them (general rule, quite a few exceptions) have been some the worst human beings I have ever known personally. Just totally power mad and totally arrogant and dismissive of other peoples abilities or opinions, and often quite abusive of the people they work with. And also can turn on their patients if the patients question them. Oh the tales I could tell.

Though I also have known some physicians, even surgeons, who are some of the finest, most caring people I have ever known, there also exists this syndrome in medicine: not uncommonly, the very best surgeons are the biggest and most arrogant and even abusive A holes. They know they are good and think they are the best, they bring in lots of patients to the hospital because their reputations bring in the patients, which gives them lots of power, and power corrupts according to the old saying. The combination of superb surgical skill and a kind, caring and even humble person who wants to listen to his patients or anyone else is not all that common. But the possible good news in that paragraph? Even though it sounds like his office staff are below par, the very fact that your surgeon is a horse's behind could quite likely indicate he is a very good surgeon. No guarantees because there are exceptions, but take it from one who knows, that would NOT at all be an unusual combination.

Post Edited (BillyBob@388) : 1/9/2016 9:30:11 AM (GMT-7)

Posted 1/9/2016 4:18 PM (GMT 0)
May I go on some more about docs who are horse's behinds, but now the exceptions and my good luck? Often the most arrogant of the arrogant are the general surgeons, the guy's who cut on most everything head to toe. But at the 650 bed hospital where I worked a lot, I noticed there was one general surgeon who was not only among the most skilled I had ever worked with, but he was a kind, loving human being to his patients and every one he worked with. Plus then I went on a medical mission to Ecuador with this guy, where I watched him work his ass off all day long, all for free, and still remain nothing but a nice guy. So about 6 months later, not very long before my PC Dx, when I needed an umbilical hernia repaired, who do you think I made a beeline to? Exactly. But 99% of the population does not have such info up front.

Same when my PCP doc saw the high PSA and wanted to refer me to a local urologist. I knew of one(of the many I had worked with) I had worked with that was not only quite skilled, but also a kind, decent human being. So I asked for a referral to him, as opposed to some of the other horse's butt (whether skilled or not) UROs I knew. Turned out that he only did opens, and did not recommend his partners who did RRPs but only had done a couple of hundred, and did not even recommend surgery over RT or vice versa. He referred me to Vandy for consultation and to either Vandy or Birmingham or Patel down in Fl if I did decide on surgery.(plus told me his dad had RT) I had the surgery at Vandy(180 miles away) and then returned to him for post surgery care. Good guy, good surgeon. Sadly, most of us do not have such information. I won't either in a few more years, since I don't work in surgery since retirement.

Post Edited (BillyBob@388) : 1/9/2016 9:27:56 AM (GMT-7)

Posted 1/9/2016 4:34 PM (GMT 0)
Go ahead and vent. You should hear my story of urology office. 😡👽. They had the address wrong and all my bills went straight to collections!

Mark
Posted 1/9/2016 5:49 PM (GMT 0)
it, type away, vent all you want. The guy sounds like not only an a hole, but an a hole who runs a poorly organized, poorly educated practie. But if he cured you, who the F cares. I think when you are a few more months out of surgery, and are pretty much back to normal, find a good uro in your local area who is capable of aftercare, and who has a heart. They exist.

It makes me crazy when i see docs who eve though they understand what we have gone through, still treat us like underlings.
Posted 1/9/2016 7:59 PM (GMT 0)
island time, you are going to be fine. You've been put into a tough position. But now you will have a new perspective on helping guide other newcomers with similar clinical cases. How will you guide them?
Posted 1/9/2016 9:33 PM (GMT 0)
IT, we all hope to meet Dr. Marcus Welby and end up with Dr. Gregory House.
✚ New Topic ✚ Reply
12