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My Freakin' 1 month PSA Results

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Posted 10/27/2009 6:32 PM (GMT 0)
So here it is guys.

My one month PSA test came back at Total PSA .40

You would not believe how much I had to go through to get the results. But that is a topic for the What the Hell Are They Doing in the Medical Community discussion.

I saw my Uro at 2 weeks post surgery as a courtesy to deliver the path report and discuss my surgical experience. He flatly stated that he did not agree with my Henry Ford doctors as to the outlook and immediately wanted me to go into pro-active radiation treatment. Now this was just 2 weeks after surgery.

With this PSA test they wanted to refuse to give me the results until I scheduled an office visit. I knew then that the doctor wanted to talk to me again about radiation at "His Clinic". I told them in no uncertain terms I did not want to schedule and appt at this time and I was not leaving without the test results.

Here is my question and I open it for discussion;

I called my dr. in Detroit and asked them about the test results. They said that ideally you wanted them to come back undetectable. But it was not uncommon for them to come back at anywhere from .1 to .4 or .5. This is why they take the test at 1month and again at 4 months. They said the real test indicator is the 3 months after the first test. This is why they schedule the follow up at 4 months post surgery.

Have any of you encountered this before? Has it been discussed here before? Does this make medical sense to any of you? And, should I be looking for a short pier to take a long walk off of?

I don't need any advice on a new Uro. As of today I considered them FIRED. I have had an uncomfortable feeling from the beginning that they were trying to slide me into their revenue stream and today kinda confirmed it for me. Nothing tangible, but it is one of those feel it in my gut kinda things and I can't and won't ignore it.

Now this is in no way to be taken as a slam on the medical community as a whole and I could be totally wrong. But as we have all said and heard many times, a large part of your success in dealing with PCa is your attitude and confidence in your medical team. I just feel it is time for me to evaluate my confidence levels and re-adjust my positive attitude.

All feedback is extremely welcomed.

Sonny

Post Edited By Moderator (James C.) : 10/27/2009 12:52:47 PM (GMT-6)

Posted 10/27/2009 6:36 PM (GMT 0)
From what I know - it doesn't make sense to do a PSA at one month. Three months is the norm.
Posted 10/27/2009 6:49 PM (GMT 0)
Sonny, all I can do is give you my experience with psa and time to clear the body after surgery. I entered surgery with a 6.7 psa. 8 days after surgery, I had a routine doctors appointment (blood work for the usual old guy problems-bp, etc) I asked them to include a psa test, since they already had the blood. This test came back 1.8, just 8 days later. I had my first psa test at 6 weeks and it came back .04. Has been that ever since. The etsting at 1 month for you MAY (and I mean May) not have allowed all of the residual psa to get out of the blood stream. Your psa pre-surgery was that almost identical to mine, so maybe that's what this is. If it were me, I would place a lot more credit on a test made at 3 months than this one, and personally not take any action until I had a clearer picture of my psa situation. Maybe request a 6 weeks test to see if it continues to drop.

By the way, I'm gonna alter the wording of your subject, there's a rule against one word in it. Freakin' ok, right? turn
Posted 10/27/2009 6:53 PM (GMT 0)
Sonny,
My PSA history might be worth noting for you. I had surgery on February 16, 2007. We knew I had issues from the surgery because I was stage 3B with 4+3=7 Gleason from the pathology. Within days of receiving the pathology info a week after surgery, I started seeing an oncologist. Here is how those tests came out:

Surgery February 16, 2007
February 28, 2007 0.9
March 12, 2007 0.1
March 23, 2007 <0.1

As you can see I still had measurable PSA until 33 days after the surgery.

I do agree that you still need to look into adjuvant therapies because of the 3A and the similar Gleason to mine. But you still want to test again to see if it is done dropping for you. You should ask for another PSA test now to see if there is a downward trend. I did see it and it was a plus to my personal mind set that it was dropping. And if it isn't, there is a solid reason to look into the "what if's".

Stay positive, my friend. You have my thoughts and prayers for a continued drop, but if it doesn't, you have many options ahead...

Tony
Posted 10/27/2009 6:56 PM (GMT 0)
Sonny, I had a test 5 weeks after surgery because of a positive margin.

I think this is where your doctor is going. Due to the suggested EPE (T3 stage) and the positive margin, he is following the protocol for adjunctive therapy which is normally SRT and possibly a combination of SRT and Hormone therapy.

However it is your choice as it was mine to not move forward with additional therapy until there is solid evidence of needing it. The .4 psa is higher than I would think, but again it may still be coming down from the surgery. Hard to tell at this point.

I personally would wait for the three month test and then decide after that. And if it is still high, then look into the radiation route. The good news is (if you want to call it that), the positive margin and detectable psa after surgery usually means the cancer is still local, which salvage radiation offers another chance for a cure.
Posted 10/27/2009 7:38 PM (GMT 0)
Hi Sonny,

My doc said it could take up to 6 weeks or more before all residual PSA is out of your system. My 1st PSA was 3 months post surgery. Maybe wait a few weeks? Ask your doc.

Mike
Posted 10/27/2009 7:39 PM (GMT 0)
Hi Sonny,

My doc said it could take up to 6 weeks or more before all residual PSA is out of your system. My 1st PSA was 3 months post surgery. Maybe wait a few weeks? Ask your doc.

Mike
Posted 10/27/2009 7:54 PM (GMT 0)
Thanks guys for all the info and more importantly the positiveness of your feedback. I have come to expect nothing less from the folks at HW.

As you could probably tell from my post I was more upset about the hoops I had to jump through to get the results than the results themselves.

BTW, my Uro just called to apologize for what had occurred. Was really a great PR call on his part. He showed a little compassion and explained that most of his patients were not as well educated or versed in PCa matters (which I owe a lot of credit to you guys for), and it is his protocol to thoroughly talk about results like these face to face. However, he still was a little on the "let's talk" path about adjunct therapy, saying that he still did not agree with Dr. Menon's staff on their take on the pathology. He did agree that waiting until after my fourth month check up made sense. I held off telling he had been fired for the time being. I really got the impression that there was a little guilt in there somewhere.

Now I don't want you guys to think of me as conniving or willing to take advantage of anyone, but if there is another 2-3 months of the FREE Cialis samples in there somewhere I sure wouldn't turn them down.

Thanks again guys,

Sonny
Posted 10/27/2009 8:06 PM (GMT 0)
Sonny,
I had my first psa at 6 weeks due to timing with my regular physical. But the "real" one was done at 3 months. One month seems early IMO. It seems like a chance to get an extra office visit. ;-) I'm just sayin'.
By the way, both times I called the office two days after the test and the PA called me back with the results.
Posted 10/27/2009 8:36 PM (GMT 0)
Sonny,

Just got home. Was shocked at first about your PSA result, but then my brain got to ticking. My own uro/surgeon strongly believes in waiting for a full 3 month after surgery, whether it be Robotic like yours or open like mine. I am thinking back ,and he said late last year, that any test earliers may read high and aren't consider and accurate reading. I am surprised you had one that soon, forgot already that its only been a month or so.

I know you came out of surgery as a stage 3, but the rest of your pathology was pretty clean. If it were me, and brother, not at all pretending to tell you what to do, I would sit tight, have it re-tested by the same lab at the 3 month mark. If that test confirms that number,I wouldnt sit around waiting for the standard 3 rises in a row. If it came back more in line as hoped, i.e. a zero, then I would wait and confirm reoccurance with another reading.

If it really is .4 in 3 months, I wouldn't hesitate to begin SRT and/or SRT with HT. You definitely want to work on it before it hits or passes .5
That is something that all the radiation oncologists I met with agreed upon.

I was so hoping you were checking in for the zero club. When my first one came in at .05, both my dr and I kind of knew what direction I was heading in.

I am here for you. All the way brother.

David in SC
Posted 10/27/2009 9:00 PM (GMT 0)
First of all, take a deep breath. There is no reason not to talk to a radiation onc right now and get an added opinion. That said, my uro only does three month tests. He said that he had three reasons, first that one month tests were not reliable, second that radiation (if needed) seemed just as effective after 3 months, third that spending time healing was going to make radiation (if needed) more tolerable.

What a painful roller coaster -- our hearts and prayers go out to you.
Posted 10/27/2009 9:27 PM (GMT 0)

Sonny:

I agree with Geezer, go ahead and speak to a rad. onc. if you don't need him fine but if you do you already have a jump on it.  There is quite a bit of info. out there suggesting that if you are doing adjunct or salvage it's best to start below.50 for best results.  I would be proactive here just in case.

Just my opinion.

David

Posted 10/27/2009 9:33 PM (GMT 0)

Sonny

Sorry to hear about your PSA.  But as others have said, one month is really early.  My surgeon told me to wait three months, so I had my blood drawn today and will find out next week.  For the last month or so I've been wondering why I had to wait so long, since other docs do the first PSA earlier.  But your case illustrates that testing too early can lead to (hopefully) high results that haven't had enough time to come down.  As well as a lot of needless anxiety if the next test comes down.  It doesn't surprise me that your PSA was still high, since you had the positive margins, so there were/are cells there still producing PSA that may be in the process of dying off (again hopefully).  So, hang in there, take a deep breath, and wait for the next test. 

Posted 10/27/2009 10:12 PM (GMT 0)

Hi Sonny.  All things considered I know you would have rather had a lower number.  As others have said, one month is pretty early for a follow-up test.  That being said, if it were me in this situation I'd probably want another test in a month or so rather than waiting the full 3 months.  As Tony indicated, he saw a steady decline in his PSA as it was tested and it would be good to know that yours was headed in the right direction - down. If it isn't headed in the right direction in another month or 6 weeks, I'd probably be looking to start my followup. 

Sonny, we'll be praying for you in these days of waiting and decision making. Keep us posted. David

Posted 10/28/2009 12:24 AM (GMT 0)
Sonny,

We all suck in our breaths with you at first glance.

But, then we also say Hey ! Wait a cotton pickin minute. Like the rest of the guys, I feel confident that your next test will be lower.

This old PC never seems to behave like we think it should, but just hang in there.

Keep us informed.
Posted 10/28/2009 1:07 AM (GMT 0)
Sonny,
My doctor told me that it takes approx. 8 weeks post surgery for ant PSA already in the blood to clear out. I had my first PSA at 8 weeks post surgery.
Posted 10/28/2009 1:21 AM (GMT 0)
Hi, Sonny

Ditto all the folks above. Three months is the standard for initial testing, so don't get too worked up on this result. Give it time and if you decide to fire this guy, then there is a lot of free Cialis at the other doctor's offices ,too. They don't pay for it so it's no sweat to them to give it out. If it eases your mind, wait 6 weeks, have your primary doc. draw blood for a new PSa test, and see what happens. If it shows a downward trend, wait until the 3 month mark and do it again. There's no set timeline for the test. Do it on your time if that's what you want.
Keep your head up.
Bob
Posted 10/28/2009 2:33 AM (GMT 0)
Well, well, we have a unanimous agreement. I should definitely not freak out now and just wait till the January test.

Also, it ain't a bad idea to have already talked to an oncologist and bring them up to speed just in case. My wife was on the phone with her MD Anderson cancer doc today and explained the possibilities and he said he will have their prostate guy and rad guy give me call to set up an appt. Won't cost me anything and I can get some interviews out of the way.

You guys no me, always trying to find the bright light in every dark cloud. Well I found mine with this test.

It would seem that because I served in Nam at a certain time I am eligible for Veterans Disability associated with PCa. Now if I had know about this before I had surgery I would have qualified for full disability at the rate of about $3000 per month until the cancer was no more. But since I have had the surgery, I now qualify for abt 50% if I have continence and ED issues. Okay sign me up.

Called back today before I go down to fill out the forms and told them abt the PSA test. The guy says come on down now. The test indicates that I still have the presence of PCa and may have to have future treatments. So he has no problem submitting my claim for the full disability amount.

Found my little rainbow in the dark cloud on this one.

Lest anyone think it, I am not overly worried about this. Especially with the positive support I receive from you guys. I still believe every day is a bonus and it is what it is.

In fact I am stepping onto the ball field tomorrow morning at 10am to work my first college game since the first of June. Am really excited about this, I even talked my partner into letting me do the plate. I told him I was much more comfortable with being back there than running around all over the field. Haven't been doing a lot of the running lately.

Big step for me. Working a couple of hours and holding in my water. I know the head coach pretty well and will explain the situation before the game just in case I have to make a mad dash for the john. At least at this school the john is in the dugout.

I'll let you know how it goes.

Thanks a lot again for all of your advice and support. To me this is what HW is all about. Support, and good information to digest.

Sonny
Posted 10/28/2009 5:31 AM (GMT 0)
Hi Sonny,

My surgeon took a PSA test at six weeks. However, she cautioned me that it very well could be detectable and not to worry since many people are still detectable at six weeks. She said if it was detectable, we'd just use it as a benchmark and take another test at three months.

Based on this experience, I think you'll still okay. I'm sorry for the shock and surprise.

Be strong and lean on your friends at HW.

Barry
Posted 10/28/2009 11:20 AM (GMT 0)
Sonny, THis has been an interesting discussion and as usual with this disease it seems like there are numerous opinions and options!
First sorry to hear about the PSA but it is an early test as you know.

My first PSA was done at about 8 weeks. Was supposed to have been at 6 weeks but had the cruise that we were on so worked out at 8 an a 0 as you know.

I second the opinion to go ahead and at least talk with rad folks and get another test at about the 3 month mark.

I had read somewhere that they usually don't want to start radiation until about 6 months post surgery to let you heal from surgery first.

Not sure if that is true or not.

Your friend,
Larry
Posted 10/28/2009 11:23 AM (GMT 0)
I had a 1 month PSA but was always told 3 month was the one to wait for. I recall "googling" residual PDA after surgery and read that it could take 6+ weeks to get all the PSA out of the system. So yes, the waiting game begins again.
Posted 10/28/2009 11:58 AM (GMT 0)
Sonny,
I think that bright spot you found is actually the glint of gold. I'd gladly volunteer to be paid 100 bucks per day for peeing in my pants. I'm doing that now - for free.
My birthday number was 192 so now I'm paying you 0.0001 cent to do it.
You're welcome.
Jeff
Posted 10/28/2009 2:13 PM (GMT 0)
Sonny,

about your appointment with the MD Anderson prostate and rad guys:

Been there, done that.

My experience was that the doctors were very good; however, if you let them, the PA's and staff will then take over and start giving you orders like you were in the Army or something. My advice is to establish early and firmly that you are in charge.

Also, funny/tragic story. I saw a young doctor while waiting for the prostate & rad guy. He gave my wife and me a basic overview of PC (which I already knew). My wife asked if there was any chance she could "catch" cancer from having sex with me. I smiled and waited for the answer I knew was coming - only to have him amaze me and tell her that it was "theoretically possible." Needless to say, I haven't had sex since.

Good luck.

Zen9
Posted 10/28/2009 2:21 PM (GMT 0)
Hey Zen,
My wife caught ED the moment the Uro snipped my nerve bundles. I guess it is communicable. ;-)
Jeff
Posted 10/28/2009 5:30 PM (GMT 0)
Sonny3, Glad to hear from you on here. You and I share the same surgery date. My first  post op psa test is scheduled for Dec. 11th. I'm still doing good using 1 pad a day and night. Good luck with everything, Wes.
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