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

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Posted 2/19/2010 4:57 PM (GMT 0)
My first PSA post RP was .04 and I was scared and angry. I wanted .00 something.

My subsequent PSAs have been .03. and I was satisfied those were good results.

A study I read said optimal outcomes on biochemical recurrence are when you have a PSA nadir post RP of less than .001 for the ultra-sensitive assays.

So here I am with a good pathology post surgery and 2.5 years out, and my PSA yesterday came back at .07. crap. That's better than a 100% increase since the last ultra-sensitive assay I had done in May last year. Not good? Well, my surgeon, William Catalona at Northwestern who is one of the father's of the PSA, is dismissive of anything below .1. I want to adopt this dismissive attitude and feel good about it being "undetectable". But reason won't allow me to do it. I'm feeling anxious and wondering if I should start the process calling radiation oncologists for salvage therapy.

My Gleason Score was 3+4, but post surgery everything was clear...clear lymph nodes, no extra-prostatic extension, self-contained in prostate. So I should be feeling good right? But I'm not.

Is there anyone out there who can tell me that they have seen up and down fluxuations in their PSA below .1? If you're out there, I'd love to hear from you. It might truly help me feel better and not feel as though I'm having a biochemical failure due to microscopic metastasis (isn't that what they call it when all else seems fine and then your PSA starts to rise again?)

I'm trying to look at the positive side...I've made it to 44 from 41 when I was first diagnosed.

Hi to all of you who supported me the first go-around. I've been absent...trying to move on past PCa. But it's always there isn't it?
Posted 2/19/2010 5:37 PM (GMT 0)
I am almost five years and psa=0.04 only one time it came 0.05.I was worryed an my doc told me it was just fine,I will not let the ultra sensitive test robed me of my serenity,we have enough to worry.mad
Posted 2/19/2010 5:49 PM (GMT 0)
41diagnosed said... Is there anyone out there who can tell me that they have seen up and down fluxuations in their PSA below .1? If you're out there, I'd love to hear from you. It might truly help me feel better and not feel as though I'm having a biochemical failure due to microscopic metastasis (isn't that what they call it when all else seems fine and then your PSA starts to rise again?) Hi.  I don't have this direct experience, but have done some reading, and can provide references, that may help ease your mind.  Some surgeons specifically tell their patients to get only the “standard” PSA test after surgery specifically to avoid what is called “PSA Anxiety.”   As you have already pointed out, Dr Catalona is (in your words) “ dismissive of anything below .1.”   Why is this?   One reason is that unilateral or bilateral nerve-sparing surgery will leave benign tissue behind which produces PSA at a level detectable by the “ultra-sensitive” PSA tests. (reference:   http://www.prostate-cancer.org/education/preclin/McDermed_Using_PSA_Intelligently2.html )   Additionally, there is also normal day-to-day variation of PSA results which are evident only with the detection levels of the “ultra-sensitive” PSA test.   This article “The Downside of Ultra-Sensitive Tests” reports normal variation within the range of what you are seeing: (reference:   http://www.phoenix5.org/Basics/psaPostSurgery.html )   The concluding sentence in the article reads: ''It's important that we don't assume anything or take action on a very low level of PSA. In routine practice, because of these analytical variations from day to day, if it's less than 0. 1, we assume it's the same as nondetectable, or zero.''   Hope that this helps ease your mind...    
Posted 2/19/2010 5:58 PM (GMT 0)
41, I am in the same boat as you are. First 2 PSA's post RP were >.01. Then at 9 mos it hops to .07. Re-test about a week later was .05. I have got to say that I am worried, but nothing to do but wait until the next test and hope for the best. I am working to improve my diet. It makes me feel better, and a little more in control. Best of luck.
Posted 2/19/2010 6:12 PM (GMT 0)
41! My post op PSA's have been 0.07, 0.04, 0.08 etc. Any thing below .1 is considered 0.00. My GP told me that he has 12 or so patients he's refereed for surgery and ALL of us have some detectable PSA 1 - 5 - 15 years after surgery. It doesn't mean you have recurrent PCa. It's the consistent rise over time and how fast that gets their attention.
Posted 2/19/2010 6:52 PM (GMT 0)
Hi 41,
This is probably just a glitch n the test. I had similar time frame and readings. My Doc said he would not call it recurrence until I had 3 rises, which I did in time. I understand the nerves as I am bad about that myself. I went on to do the SRT and am over a year out and am <0.04, as low as my test reads. Try not let it bug you to bad because you may be going up and down like the guys earlier in the post.

Good luck

David
Posted 2/19/2010 7:15 PM (GMT 0)
Listen, my friend. There is no exact .00. Your .03, .04, and .07 are still all "zeros". You are doing great, don't let the ultra sensitivity of tests spoil what is actually a good run you have going there.

Your post surgery numbers have been great, many would love to trade places.

David in SC
Posted 2/19/2010 7:51 PM (GMT 0)
Hi 41,
Try not to worry. Your PSA still qualifies you as a member of the zero club. Relax, you test again in 3 months and see what happens.
Posted 2/19/2010 8:44 PM (GMT 0)
If your PSA rises above .1 after surgery it does not necessarily mean metastasis. There can be some cancer cell left behind in the prostrate bed which actually can stay dormant of quite awhile. That is why they do IMRT to the prostate bed when your PSA goes over .1. As I understand you then have a 50% chance of still having a cure (no recurrence)

Walsh in his book on PC does not recommend an ultra sensitive PSA test for the same reasons as cited above..

Ricky
Posted 2/19/2010 9:39 PM (GMT 0)
41,

I went thru a similar situation,  but I had 2 focal point margins and was not negative margins like you.  I had a small but significant PSA rise between my 2nd and 3rd year post op to above the .1 level.  With your negative margins and still lower numbers,  I would concentrate on healty living and diet.   Try not to worry and stay positive no matter how difficult that may seem.  

BCR was defined as somewhere around  0.20 to 0.40 from what I had read,  but now they are also looking at 3 consectutive "rises".    With my slightly positive margins  and a trend that did seem to rise,  I opted for salvage radiation based on my DaVinci's doctors opinion along with the radiation oncologistm, my mind frame,  and some other logistics.  The current practices  seem to be opting for salvage radiation for some cases at the lower numbers now as some studies have shown better outcomes.  Thinking the PSA number was starting before 0.50...     

Anyway,  time for calm and maybe some additional research to help ease the unknowns...   The thing you have going for you is you have plenty of time,  still low numbers,   original clean margins,  and future alternatives.  And the technology and treatments are improving every day....  

I know any PSA rise it is dissappointing...  I have been there...   I thought since the prostate was gone I would never have to deal with PCa again.   Even started to forget abpout scheduling routine appointments for checkups.  I forgot that I was a "survivor" and not a person that never had PCa.  It took awhile for my mind  to switch back to a positive fight mode and constuctive thought processes...   To not let PCa control my life, but for me to  once again become informed and  in control of my life and decisions on living a quality life and as a PCa survivor.

God Bless,

pasayten (Ray)

Posted 2/19/2010 9:46 PM (GMT 0)
41,
Firstly, it is not possible for the ultrasensitive test to give a result of .001 or lower. The lowest possible limit of detection by the latest equipment is .003 so a result below this is not possible. If PSA was not detected using this equipment the technical result would be <.003 (undetectable). But this range of detection is prone to error simply because it is so infinitesimal therefore many labs, even if using the latest equipment, will drop the third decimal place and if no PSA is detected, will post the result as <.01 (undetectable). If a lab is using earlier equipment these figures are increased 10 fold. The 2nd generation test will detect PSA down to its detection limit of .03 but this has the same percentage margin of error as the ultrasensitive test so is often simply reported as <.1 undetectable. So you see much is dependent on the equipment used. Additionally different labs in different locations may calibrate a little differently (even temperature variations can have an effect) so it is important if going ultrasensitive to use the same lab in the same place. I also make sure that the path request is marked "progress post-prostatectomy" so there is no doubt that this is not a run of the mill PSA test.
Casey's links are very good reading and you should find them reassuring.
Bill
Posted 2/19/2010 11:21 PM (GMT 0)

This is a VERY interesting thread.

I know Dr. Strum really pushes for the ultrasensitive test. Part of me agrees in th sense that more information is better than less information.

But in this case, maybe not. My doctors are against the ultrasensitive test precisely for the reasons shown in this thread. It causes way too much aggravation/stress.

But it is not a clearcut choice, for sure!

Mel (10 days away from my first post-op PSA test)

Posted 2/19/2010 11:27 PM (GMT 0)
Over the years since my RP, things sure have changed.  In '93, a 0.1 was good!  The doctor was excited with a 0.1, as that meant basically there was no detectable trace.  Then, a few years ago, equipment was developed that would go down to 0.0 something.  That second decimal point could be anything from 1 to 9, and that was still undetectyable.  Now, we are seeing 0.00 somethings, meaning it is undectable!!!  So, I'm still excited when mine comes back at 0.03, which is what my report was today.  So, as the old saying goes, don't sweat the small stuff!!!  And, I, too, get that anxious feeling a week or so prior to my annual check-up, wondering what that "undetectable" figure will be.  Just human nature to worry a little.  Just take it a month, then 3 months, then 6 month, then a year, at a time.  It'll be alright!
Posted 2/19/2010 11:36 PM (GMT 0)
Healing Well and Xanax...a great cocktail for calming one's nerves from PSA anxiety.  Now onto a nice glass of red wine.  And then, since my kids are at a school overnight, I now plan to take my wife to dinner when she comes home.  It's the least I can do to make up for my emotional melt-down last night.  Isn't PCa survival a blast? :)

Thanks to everyone here for your encouraging words.  This continues to be a great site and I have always been greatful for finding it.

 

 

Posted 2/25/2010 3:40 PM (GMT 0)
This post is most timely as I am going through a rise in PSA 2 years post op. My PSA's were undetectable through first 18 months. My next PSA test was done 27 months post op - results were 0.16. Of course, this test result brought me back to reality - I was overconfident about my consistent undetectable test results. I had another test done the following week with a different lab. Results 0.9. Then one month later - last week had another PSA with the lab that had produced the 0.16 results. This time the results were 0.1.

After much reading - research and consulting with oncologists, radiation oncologists and my surgeon, I have been left with differing opinions. The clear conclusion from both oncolgists and radiation oncologists is that once your PSA rises even to 0.05 you no longer have undetectable PSA and at some point it will rise to a level that it could metastasize whether it be 1, 3, 5, 15 years from now. And studies now show that radiation at this early stage when it is likely to be in prostate bed since PSA so low that your chances for a better outcome are greater. (Hard to argue radiation treatment with that reasoning). Even if miscrscopic in nature they believe eradicating any remnants of these cells gives you a chance for a better outcome.
My surgeon believes that if my PSA stays at 0.1 no need to do anything - only if it continues to rise should I consider radiation.
It is the oncolgists who are not necessarily radiation bias that seem to be most pursuasive when they have told me that it would be better to address a rising PSA while it is still lower to increase chances for better radiation outcome since based on my pathology it is likely that cells are still in my prostate bed.
I have gotten over my intial disappointment after my rise in my PSA and have accepted fact that this is an indolent disease that I will just have to deal with as it presents itself.
While I would like to not go through radiation and just wait to see if PSA continues to rise, if my chances in the long run are better with radiation then why not do radiation ?

Any thoughts or comments that you would like to share would be appreciated
Posted 2/26/2010 4:43 AM (GMT 0)
I am in a similar situation but a little younger and higher Gleason.

I also have a slowly rising psa and have decided to wait until my psa hits 0.2, before radiation. And even then the probability of a "cure" is still quite low. My surgeon suggested that radiation may not even be an option for me as if there are any PCa escapees, they are no longer in the prostate bed.

He also said that he thought my rising psa may be caused by benign prostate cells left behind, but that may also be wishful thinking.

Your psa is interesting in that it has fluctuated considerably over a short time -- 0.16, 0.09, 0,10 (considering your 0.9 figure as a typo that should show as 0.09). So it's clear that at these levels we should not sweat over even large fluctuations -- so long as there are some downwards fluctuations among them.
Posted 3/25/2010 11:57 PM (GMT 0)
These ultra sensitive test CAN drive you crazy.

Mine had been <0.04 for almost 2 years, then at 26 mos it was 0.05, 29 mos 0.06, then 33 mos. back to < 0.04, 36 mos <0.04 then today at 39 mos it came back as 0.07. If you go by the last test, at 36 mos does that mean it has doubled in 3 months, and why when at 0.06 did it go back down to < 0.04 for 6 months then back up to 0.07.

I feel like Barbarino "I'm so confused"
Posted 3/26/2010 12:12 AM (GMT 0)
One of the factors they look for is three consecutive rises when at the lower levels before getting more concerned about it.    Your post op pathology is another factor.

I just finished my SRT and will post results in a couple of months of my results.  I gave reasons for choosing SRT at a PSA of 0.11/0.13 in a post a few posts above.

pasayten

Posted 3/26/2010 2:07 AM (GMT 0)
I don't like the PSA anxiety stuff. What it really is, is a doctor doesn't want to deal with patients who are in that area where their PSA may be starting to rise. "Just wait until it is .2 or .5 then well worry about it."

I have had 9 months of <.01 readings. If I suddenly start to to see .02, or .05, you can't tell me something isn't going on. It isn't logical. If I never had a <.01, then I would agree.

I am watching my PSA, and once I see a couple months of .01 or .02 increases, I am heading for the radiologist. The sooner I act, the better chance I have of hitting it close to the protate bed. That is my reaosning and I'm sticking with it .
Posted 3/26/2010 2:19 AM (GMT 0)
The lab that does my testing can only read PSA down to 0.04. So I'm not sure if that is considered ultra sensitive or just regular testing. In any case, since my staging was T3a, the Onc and myself decided to keep a close eye on the PSA level. After about 18 month or so, the PSA level went to .04, .05, .07, and when it reached .08 we decided to proceed with SRT (3 consecutive increases). On the day before the start of SRT, the level was .1. So, in my opinion, the more sensitive test can be of benefit to determine if there is an increase in PSA so that RT can be started when its effect has the best possible chance of a positive outcome. It is my understanding that the earlier RT is stated, the better the chance of a successful outcome. Was I right in starting RT so early? Only time will tell, but thus far it looks promising. Would my PSA have stabilized at .1? I'll never know for sure, but in my own mind I have serious doubts and I'm glad that I went ahead with the SRT.
So, 41, I wish you all the best and hope that your PSA will stay at .1 or less and that you'll not require to go the SRT route.

All the best to you.

Magaboo
Posted 3/26/2010 5:09 AM (GMT 0)
Not to scare you but with a pathology report like that, excellent, if you have a BCR, SRT, will probably not be much help. It is likely systemic, which is not the same as metastazed. I wont throw out percentages, but low, most here would agree with that , if not they will have info to back it up. systemic means its out there away fm radiation field, but not to bones , organs etc. that takes an avg of 8yrs to happen untreated. All dependant on gleason score I guese. So now ur talking HT and as with everything else with Pca, lot of opinions, Walsh and Scardino feel and they say studies have shown earlt HT and later HT show no significant survival advantage. They say it makes the patient feel better in the head ,cause psa is down, but the cancer that could kill you, the kind that could care less about hormones is still there and moving. Having said all that, You have nothing in those stats that indicate BCR. Im in the same boat, great Path report, but 3+4, tertiary 5. Have had only 1psa post op,0.0. however wanting to stay prepared, Im workig on a plan. I'll probably pass on radiation, be cause of side effects and loe chance of cure, and decide at some point for HT, not imediately tho. I am 66 but extremely fit,3.30 marathoner at 64so should liv a long time, but who knows. It really is an individual disease. Find out all you can about BCR, but don't over react to this psa stuff. Try and stay focused, positive and be cool. I really think watchful waiting is more relevant Post op than post diagnosis. Good luck
Posted 3/26/2010 5:50 AM (GMT 0)
41diagnosed,

I would dismiss much of the last post. Although I disagree and question several things mentioned there, the "systemic" comment is not valid. Even if (and this is a BIG "if") you were on the verge of a biochemical recurrence, the fact that you have gone 2.5 years without one is a big advantage. Walsh discusses this in his book, that the longer the time to recurrence, the better the outcome with radiation due to the greater chance of localized cancer. Two years is given as a threshold, and you are past that.

In any case, I agree with most others here that you are still in the "0" club. I have had my own anxieties with the ultrasensitive test and decided to switch to the standard variety. In my opinion, the ultrasensitive test may make sense for guys whose pathology reports were not as clean as yours.

CaPCa
Posted 3/26/2010 9:41 AM (GMT 0)
41, Good luck with your future PSA's and thank you for posting your concerns. The responses have been really helpful to us especially with the range of views and experiences shared - my husband leaves all the organising, and PSA interpretation to me. Its just the way things work for us, but I too feel the extreme stress (and some responsibility) of having to eventually interpret the next ultrasensitive PSA, and so appreciate all this info given here. Now that CJ's annual PSA is due, I am avoiding having to plan it for the reasons all outlined in posts above, but when we do face the next PSA test in a few weeks, I will also be helped greatly by the information here - thanks 41, and thanks all you guys.
Posted 3/26/2010 10:11 AM (GMT 0)
41,

My Hospital (AVL-NKI Amsterdam The Dutch National Cancer Institute) simply do not do the sensitive tests period. (becasue of PSA anxiety etc)

For them anything that is <0.1 and stays <0.1 is okay. (Which is why my results going from 0.1 to 0.4 in three months told them that was definitley a BCR and it was time to do something else.)

These 0.02. 0.04 differences/fluctuations are very small.
PSA anxiety is not nice though.
I think it helps to think about what our test results were BEFORE treatment. If we had had a PSA level of say 12.97 one month and a level of 12.95 another and then 12.96 the difference would hardly have been noticed; we'd have thought of our PSA as being 13, but the decimal differnces are the size of what worries guys after treatment. What mattered at that stage in our lives was when the results had gone from from 4 to 7 to 9 to 13 etc.
What matters after treament is the combination of PSA level and rate of change. double from 0.02 to 0.04 is not the same as doubling from 0.2 to 0.4.
The margin of error has to relevant.

PSA in a blood sample starts to be destroyed as soon as they put the phial of blood on the desk to label it so the longer beofre it gets tested the lower the level gets.
It concerns me slightly that I do not think that (my) samples have the time they were taken on the labels with instructions to the lab to test after a standard interval has elapsed since taking the sample. (I have my samples taken in the hospital next door to the lab where they are going to be tested, but samples taken at my ordinary doctor's office get taken across the city to another lab when the nurse finishes work at the end of the morning.)

It would, I feel, be interesting to see what results someone got back it they took two samples at the same time and sent them to the lab with instructions to test one sample say one hour later and the other say five hours later. This would not have much effect on a sample where the difference came back as 12.05 or 12.03, but could surely seem significant for very tiny values such as 0.05 and 0.03.

I heard that PSA basically never goes away if you test to this degree of accuracy.
I don't want to get too off thread here but as I understand it the human body always makes very very small amounts of PSA to the extent that even women's bodies can make it. ("Wikipedia" reports a study by M. Zaviacic M. Slovak Academic Press, Bratislava 1999 called: "The human female prostate: From Vestigial Skene's Paraurethral Glands and Ducts to Woman's Functional Prostate" even found PSA and PAP (prostatic acid phosphatase ) in women's vaginal secretions! The oddest things turn up when you search the web for stuff about PSA!)

Alfred
Posted 3/26/2010 10:28 AM (GMT 0)
All I said is my understanding of what I have read. for my sake if I am wrong,let me know for my sake. I dont know f I am right, I dont now if u are right, but I throw things out of my understanding. Is there a difereence tween systemic and matatazied. As I said in another post a lot is thrown out here, with out backup. I,m not an expert, help me where I am wrong. Please dont dismiss me and let me go down a wrong path and say oh well, he'll find out, the hard way. We are all in this together, lets help each other thru this jungle, Bless us all everyone!
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