Just checking a strange piece of advice from a nurse....

Hi Everyone: A complete newbie here - my first post in this forum.

A brief background: Husband had Davinci RP in 2009 at U-Michigan at age 47. Negative margins, I think his Gleason was 3+4. Spared nerves, no lymph node involvement. Great recovery, being so young - no residual issues whatsoever. We thought he was done, but....here we go, a PSA showing .2 after 7 years of "less than .1" This was taken just a couple of weeks ago.

So we called everybody - the urologist, the RO that was consulted for "future" need, and U-Michigan. The urologist says wait three months for another test, its probably a lab mistake. Unfortunately his U-M surgeon has moved on, but the current guy at U-M says we'll send you a PSA order for six weeks. The RO never called me back.

But the piece of advice from a urology nurse was this: Make sure he isn't doing anything that will vibrate his business, like riding a motorcycle, driving a tractor, at least a week before the test. I reminded her that he had RP, and therefore no prostate, but she was firm - doesn't matter, we tell everyone that.

SO - does anyone here know if that advice applies to post RP patients? Hubby does ride both on a regular basis. Even the six week time frame is making me uncomfortable, after reading the three study summaries from Allen. Would vibration affect the test if the cancer is in the bed? We want this next test to be pristine. The U-M PSA date is 9/19. I have 10 acres to mow - but I'll be happy to do it, if we can make sure that our next test is accurate.

Thanks - Piccolo

That advice shouldn't matter for anyone who has had his prostate removed, as far as I know.

Also, there is no need to wait six weeks to do a retest in a situation like this. No sense in sitting around being anxious and not being able to do anything. I would get the retest now and found out. Either you can relax -- or you can actively pursue the next step in the process.

If it were me, I would ask the docs switch to the ultrasensitive test now so you can readily determine how fast the cancer is doubling, if indeed it has come back. This will be important information in figuring out a radiation plan and what else if anything to do along with salvage radiation.

Consider simply not taking any further advice from a urology surgeon at this point, and finding a RO you like, who returns your calls. Surgeons have nothing more to offer your husband at this point

You're right that it doesn't matter if you don't have a prostate. I hope you see an RO quickly - you want to jump on this as soon as you get a confirming PSA.

While most medical people agree that activity such as sex or bike riding should not effect psa after surgery, there is a school of thought that if there is some cancer still lying in the prostate bed it might show up more after activity. If that is true, we might expect some further progression in the future. So I guess it might not make a difference and further treatment might be appropriate.

Interesting replies! We did not use a quest lab but it is available to me. I think we will go back to the hospital satellite lab. Now I am curious, time to learn more from previous posts about quest. I will call again tomorrow to the cancer center and see if we can get him in faster. I like the RO but she has been on vacation. Does the MO call the shots or the RO?

0311-

I haven't seen any data on it, but I would abstain for a day to be safe. Bike riding too. We have learned that sexually active studs tend to have more bounces after radiation.

- Allen

Hey Piccolopower
Welcome to HW

I'm in Rochester NY, and get my blood work collected at a lab connected with Univ of Rochester. (used to be called "Strong"). On the test order worksheet there are two boxes. One is "Screening" that returns one digit after the decimal. The other is "Diagnostic" which returns 2 digits after the decimal. Make sure the correct box is checked.
A while back we asked guys here to find out how much the test cost in their labs. I collected the data and published it here. It turns out there was no significant difference in price for 2 decimals vs 1. One lab charged MORE for the single digit test!
So, insist upon the 2 digits. If the lab can't do it. Find another lab that has stepped in the 21st century.

By the way, the rules vary from state to state. In NY, I need to have a doctor's order to get a test done - even if I am paying for it! NY State even required me to have a doctor's order to buy an incontinence clamp! (Fortuntaely some nice guy here smuggled one across state lines to help a brother out.)
New York State allows me to go into the neighborhood gun shop and buy a Glock 22 with a laser sight, three 7 round magazines, a shoulder holster for concealed carry and a couple of hundred rounds of ammo but they won't let me buy a winkie clamp so I don't dribble into my undies when I am working. Strange.

I had my surgery done about the same time as your hubby so this scares the carp out of me. I try to be as consistent as possible before every test. I eat the same food the night before. I avoid sex for 48 hours before blood draw. I go to the same lab, on the same day of the week, at the same time. I even go to the same restaurant on the way home! (And I wear my lucky, He Man, Master of the Universe undies. )
It probably makes no difference but I want consistent readings and try to control what I can control.

One more pet peeve. Honestly, your surgeon was done with you the instant the last incision knot was tied off and snipped. Sure, you needed some follow-up in case of infection and for data collection, but realistically, any treatment you have now will not be surgical. It will be done by an MO, RO, or.... but not a surgeon.
It does not hurt to move on.
Good luck may your next numbers be zero.

Jeff in NY and worried no more.
Isn't it strange that when we get a "bad" number we all hope it was due to incompetence?

Halbert: we're in southwestern Michigan, near Kalamazoo.

Newton--good for you! Let us know if things continue to...ummmm....progress!

Well I'm back....with some interesting follow-up. Sort of.

DH had his Ultra-Sensitive PSA blood draw on Aug 30. Uneventful, I verified with the front desk that it was the Ultra-Sensitive test, PLUS I verified that the previous tests have been marked "Diagnostic" which they have been. We always see two numbers on the right of the dot, but the 2nd number always seems to be a zero.

SO...

on Aug 31 I received this message from his primary care guy: "Good news, your PSA is stable at .20".

HMMMM

I sent back a message that said "This can't be right, the Ultra-Sensitive had to be mailed out. Did that happen?"

Rather sheepishly, I received another message from his PC doc the same day, that read "we discovered that they did the wrong test, and they are looking into the possibility of using the same sample for the right test". I never heard another thing, so I am assuming that they were able to use it. When I required earlier about a re-test due to a possible lab error, I was told that they keep the samples for one week and then discard them.

Usually his PC guy is pretty good -- but having talked to the lab personnel ahead of time was a blessing. I knew it was impossible to get the result that fast from this particular lab. We aren't too happy that the result is the same on the standard test (no lab error apparently).

Also the appointment with the RO is for Sept 15 (she is on vacation) and I am working on getting a referral for a 2nd opinion at U-Mich with their RO in the Cancer Center. They are supposed to call on Tuesday. Things are moving along.

It strikes me that none of the doctors seem too concerned. One on-call urologist actually said to me "there would be no outcome difference if he started radiation today or in six weeks." This doesn't do much for his PSA Anxiety.

I'll open another post once I hear what the plan might be. I'll work on getting a good signature as well - but I have to find the post-op report to get the numbers right. Sounds like I might want to have some questions ready about EBRT or ADT. His current age is 54 so QOL and SE issues are paramount.