The post RP PSA dilemna... changes below .1

If you are going to try to read into the data, (and some people think you should not) you should try to be as consistent as possible. Take the test at the same time of day, with the same eating and s*x schedule. For example, I always have my blood drawn at the same lab, between 8:30 -9:03 AM before eating breakfast and avoid s*x the day before. I have no data to prove this is significant. I am simply trying to eliminate any variables I have under my control.
Jeff

7/22/2010 - .03  what a relief!  I actually got teary-eyed when I got the news!

guess the .04 and .07 truly could have been "noise".

i'm believing maybe i'll be ok :)

What a great thread, 41! Thank you.

This will be a great thread for others to see who have had fluctuations (like me), a couple of years out. We need all the comfort we can get.

Less than 0.1 is a great place to be!

Best,

Barry

Just my two cents here but these types of fluctuations - and the anxiety they create - is why so many MDs are against the ultrasensitive test. PSA fluctuates throughout the day and the fact that you don't have a prostate does not mean that PSA is not being generated. Benign prostetic tissue (often left behind during nerve-sparing surgery) can and will generate very low levels of PSA. Over time, these levels might show up in a PSA test. If the PSA goes down, that means that the body is doing what it's supposed do - killing off the PSA. When cancer is present, the PSA will likely continue rising since it's being fed by the body's blood supply.

An example comes to mind of your body weight...get on the scale first thing in the morning, it's one number. A couple of hours later, it's another number (probably a higher one). Later that day, yet again a different reading, and so on. PSA is no different - it changes all the time.

If your PSA is less than 0.1, take it as a good thing and try not to read into every fluctuation. You will drive yourself crazy.

Hi 41, I was just reading through the posts and saw yours. I was a regular here a couple of years ago but haven't posted in a while. I used to get upset w/ my psa #'s which ran sometimes up as high as .09 over the years. Yes years, I'm coming up on my 7th year aniversary of my radical and still a standing member of the goose egg club! I usually post here every year on my anaversary which will be at the begining of next month. Maybe you can watch for it? I hope hearing from me will help you not to worry so much about any # under .1!!!
Good luck and hang in there! There will be lots of years to not worry in your future!
Pete

hi Every one,
I am glad I found this link again
I am a 7/25/07 pc survivor. I had robotic surgery on 7/25/07
I have only had the std psa test done
they always came back <0.1 ,
that is until my last one, it came back at 0.1
now i am wondering did they just leave the < symbol off
or maybe it was always at 0.9 and now just ticked up to 0.1
I will have to wait another 4 months and then see how it looks.

By the way I am having Hydrocele surgery on DEC17 ,
this was caused by one of my two Hernias,
of course the hernias where a direct cause of the rpc,
all the streching during surgery.
Any way I will keep checking this link and hope to learn more..

Thanks All
Dave

dek139,

What was your post-op pathology like. Did you have positive margins, what was your gleason score?

It's amazing how some of these topics are timeless and even after several years, there is little resolution to the question being posed, What PSA number signifies BCR, and when is the best time to take action ?

I have been watching my PSA slowly move from <.01 to .04 last week. After 33 months, I am pleased with the slow progression, but just like the original creator of this thread, I am uncomfortable with the lack of clear cut guidelines, and protocols on this topic.

I have been to Cleveland Clinic to consult with Dr. Stephenson on this topic and will return in a couple of weeks. He appears to believe .05 is the magic number.

Goodlife

41,
I want to comment on Billy Mac's post. I have spent my career as an analytical chemist. One if the hardest things I had to learn early in my career is that the measured number is a statistical best guess. You could do the same measurement of the same sample ten times and get a varied range of numbers.

So when you are near the limit of the test's ability to give an accurate number, a little "bounce" is expected. This true at the bottom range of the test and the top range of the test.

If your URO is not concerned with your numbers, you shouldn't be either. After all it's a guess, an educated one though.

My personal opinion is this: Don't relax. Stay vigilant.

No offense to anyone else here; I realize is a highly personal decision.

The decision of when to call a rise a recurrence should depend mainly on the time trend. My PSA just hit .1 but because of the steadiness of the rise over four years, my doc plus two others I consult with are all saying it's time to get radiation. I spoke to one of the docs who was involved in writing the guidelines now used by the AUA to guide decisionmaking and he (along with the others) say this:

1.) The absolute level of PSA is not the most important thing.
2.) The kinetics or time trend of the PSA is much more important.


So, a person whose PSA jumps around in a trendless way, who has been between say .05 and .1 for three years should NOT call it a recurrence if it goes to 0.11. Perhaps even if it goes to 0.2

But a person whose PSA started at .01, stayed there for the first year, then the next year it ranged between .02 and .04, then the next it ranged between .04 and .08, and then the next year it hits .1 -- that person should consider themselves to be having a recurrence at 0.1 or lower, and treat accordingly. Myers and Scholz have both said as much.

The official standard of calling a recurrence at >0.2 (+ a confirming reading) is useful for people who need to have an absolute standard -- but there are many people with PSA's of between .1 and .2 who ARE having a recurrence, and many people with psa's between .2 and .4 who are NOT having a recurrence. There is no more magic in 0.2 for a recurrence than there is magic in saying that a PSA of 4 should send someone for a biopsy. It is an arbitrary cut-point, nothing more.

Of course for those who do not get the ultrasensitive test, they have no way of assessing the kinetics so they have to make a decision based on the absolute cut point.

Again, no offense to anyone - I realize this is a personal decision. But this is my view after consulting with several doctors. Kinetics matter more than absolute numbers. And you can't make a decision that takes kinetics into account unless you have the information from an ultrasensitive test.

Just got my new PSA and it was down at .05. I was so relieved. I was depressed when my PSA shot up 21 months out from RRP to .08 as I had good path and contained disease. I was very concerned about BCR. I was cautiously optimistic in May when it nudged back to .07 but I am thrilled with the new number. For the first time since January I feel a sense of relief. I guess you can bounce up and down below .1. I had a friend/urologist (not my MD) who thought I should jump at XRT with the first bump to .08. I also thought about seeing DR. Myers and I probably would have done Avodart. I think that this stresses the importance of getting a trend with these PSAs - even at the low range. Also, I was getting the Sentaur test. I was thinking about following up with the Roche Cobas since Worried Guy believes this reads even lower! Anyways - good luck to all in this fight. BTW, in January I gave up all red meat and ate chicken only a few times. I also gave up most dairy. I got my Vit D from 23-38 and I take resveretol, Zyflamend, aspirin, and bee propolis, (and red wine). Don't know if anything made a difference.

Blue bird - I think that your husband is doing well. He has very similar stats to me. I think that .03 is very low and in general I think that some psa starts to come back from retained prostate cells by the end of the second year. However, I agree with you to do all the lifestyle stuff that you can. I was cocky until January when I was .08 at 21 months. This scared me to death as I did not want XRT and thought that PCA was behind me. I did my own research. I am not speaking to you as a health professional but as a layperson so take it with a grain of salt. I decided to go all out in January. My regimen includes basic tenets of Dr. Meyer's regimen (but I did not see him).

1) My Vit D level last summer was 24 with normal being 30. I took some extra D but was not religious. In January I took the prescription dose for patients with low levels of 50000u a week for 6 weeks and then 6000u a day. To my surprise when I rechecked a month ago I was still only 38!. Better but not the 50-60 which is the goal. I think that Vit D is very important and I would see my PCP if I were you to check it and do what it takes.

2) I take Pomi-T (pomegranate) supplements. I think even my urologist thought that was a good idea as its been shown to inhibit PCA growth in the lab.

3) Bee propolis (not the full dose) - I saw this on a website. A Univ of Chicago study showed a lab effect on PCa growth.

4) aspirin daily - can't hurt

5) Zyflamend - google it. My wife got in from a Sloan Kettering site and it contains several things including tumeric and green tea.

6) Resveritol for anti-Oxidant effect

7) Diet - I eliminated all meat and chicken and eggs/dairy. no ice cream or yogurt. I will have cheese but I try to make it European if I can (they feed cattle on grass - not feed). If I go out to eat I just avoid meat and chicken. I will eat any cheese when I am out -pizza etc. I didn't do as well eliminating sugar. I think that this is important but its hard. We eat lots of olive oil, tree nuts like almonds, pistacchios etc., soy and vegetables. LOTS of fish! For breakfast I have natural almond butter on toast with bananas or raw honey. I also drink a breakfast shake three times a week that has soy protein, blueberries, kale and almond milk. I drink a lot of red wine (this helps me deal with the mental aspects of my disease and life in general as well. My wife and I love our new diet and we often joke that we will probably live longer now because of prostate cancer due to lifestyle changes. I love eating this way and I am going to keep it up. I have not lost weight but I work out and I am not fat .

Again I am not speaking as health professional but as far as I can tell these supplements are low risk. Always best to ask your MD. However, I will say we never got much guidance in lifestyle changes from our surgeon or PCP after surgery. For them its just XRT if it comes back. They move on to the next prostate! Good luck. You clearly love your husband and want him around. My wife's help with me in terms of diet (and other things) post op has let me know that she loves me and that is the other "benefit" of this disease.