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Jeff & Becky - possible rise in PSA?

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Posted 1/27/2008 5:02 PM (GMT -8)
Hey everyone, it's been a long time since I posted. Everything has been going pretty well, working on the ed with some progress, and until this last PSA Jeff's numbers have all been <0.01. We are at a new dr., so also at a new lab, and his test last week came back at .1 . (The dr. said they send it out to the Mayo clinic). It was a message the dr. left, and although he sounded a little concerned he said this could just be Jeff's baseline, so we'd check again in 3 months.

I CAN'T wait that long, Jeff's going to call him back tomorrow to see if we can go to the old lab, and see it it's changed. If it hasn't I would think that it was just a difference in the labs. But if it has, I really don't want to wait 3 months. Although Jeff's scores after surgery didn't change, there were cells detected in the margin.

Any ideas for us?

bec
Posted 1/27/2008 5:10 PM (GMT -8)
Hi bec,
Great to see you again. Yes I have a recommendation. Labs can make mistakes. So why wait. Call your doctor back and ask for another test. Prove it IS 0.1. Then do as he says. Wait the three months and test again. Don't forget WE have control over our doctors. Why live wondering, check it again, and tell him that's what you want.

Tell Jeff, we wish him well. He's my age and I keep an eye on us non-baby boomers. (according to the census)

Tony
Posted 1/27/2008 5:18 PM (GMT -8)

Hey Becky,

Nice to see you again.  Yeah, as Tony suggests, get another reading.  I'd be a basket case after a 3 month wait and you DO have control over your treatment.  Tell the doc to "git er done".

Jim

Posted 1/27/2008 5:18 PM (GMT -8)
Thanks Tony. We lost my dad last year to cancer that I don't think he or his dr. were proactive enough in dealing with. I won't let that happen this time.

bec
Posted 1/27/2008 5:22 PM (GMT -8)
I agree with Jim and Tony. It's your life.

Regards,

Bill
Posted 1/27/2008 5:32 PM (GMT -8)
thanks Jim & Bill. I will keep you all posted on the conversation with the doc tomorrow.

bec
Posted 1/27/2008 7:35 PM (GMT -8)
Dear Bec

Sometimes I think that the worst part of having prostate cancer is not going through the treatment, but sweating out each PSA test thereafter for the rest of your life, even after you hopefully reach the nadir (low point). I found the following information in a "Report to the Nation on Prostate Cancer" published by the Prostate Cancer Foundation (which has raised a substantial amount of money for PCa research since it was established by Michael Milken in 1993 after he was stricken with PCa at a young age).

http://www.prostatecancerfoundation.org/atf/cf/%7B705B3273-F2EF-4EF6-A653-E15C5D8BB6B1%7D/FINAL%20PCF_PatientGuide.pdf


"In the post-prostatectomy setting, the most widely accepted definition
of a recurrence is a PSA > 0.3 ng/mL that is seen to be rising
on at least two separate occasions at least two weeks apart and measured
by the same lab. In the post-radiation therapy setting, the most
widely accepted definition is a PSA that is seen to be rising from nadir
in at least three consecutive tests conducted at least two weeks apart
and measured by the same lab. It’s important to always use the same
lab for all of your PSA tests because PSA values can fluctuate somewhat
from lab to lab."

Let hope and pray that the bump up in Jeff's PSA is nothing more than a change in labs. I would be very paranoid if I ever have to change labs--I have charted my PSA with the same lab since inception. Best of luck and good wishes on Jeff's PSA retesting--hopefully all will be ok.

Dave

Posted 1/28/2008 4:41 AM (GMT -8)
Dave,
Thanks so much for the information. I was trying to find something online last night that would give me an idea on psa numbers and different labs, but to be honest I waas so emotional and exhausted, and then I read Sue's post about her husband Lance and I kind of lost it. My husband is in good spirits and we prayed together last night, so we'll just see what the doctor says today. Our old doctor used a lab in their building, so hopefully our new one can order a test with them, too.

again, thanks for the info, it definately made me feel better -

bec
Posted 1/28/2008 4:59 AM (GMT -8)
Bec,

We're behind you guys and thinking of you. Will be looking for your update.

Susan
Posted 1/28/2008 6:35 AM (GMT -8)
Dear Bec

Glad I was able to help a little--that's what we are here for. It gave me an opportunity to give myself a refresher course in PSA bounce and pass some information onto you and Jeff.
Thank God for the internet! I am thinking of you and Jeff and praying that all will be well. Let us know as soon as updated PSA tests are completed.

Dave
Posted 1/28/2008 6:57 AM (GMT -8)
2busymom

Good luck today with your meeting with the doctor, I too am in a simular position only I did not have a different lab. While my pathology indicated capsuale contained I have had a bump in my PSA starting with November's test. It came in at .2 and we just had another test a week ago and now it was .3 so as stated above by Dave they use the .3 mark to start planning and the .4 mark as a time to take other action. So while I don't like waiting I have my next appointment in March for one more PSA to see where it sits again and a meeting with a radiation doctor to plan the next steps. They had warned me of the possibility even through everything looked good. I hope that your bump in PSA is just because of a different lab and all is well. But I went the surgery route knowing that if I needed more treatment that there was more good options for me. They feel confident that some radiation can get a couple of wild cells that survied the surgery and exist in the prostate bed area.
Best of luck today, our prayers are with you.

Norskie
Posted 1/28/2008 7:25 AM (GMT -8)
If you can, why not redo the test at your new place and the old place? Might give you a good idea of how the two labs compare.

Good luck!
Posted 1/28/2008 2:37 PM (GMT -8)

2busymom said...
Hey everyone, it's been a long time since I posted. Everything has been going pretty well, working on the ed with some progress, and until this last PSA Jeff's numbers have all been <0.01. We are at a new dr., so also at a new lab, and his test last week came back at .1 . (The dr. said they send it out to the Mayo clinic). It was a message the dr. left, and although he sounded a little concerned he said this could just be Jeff's baseline, so we'd check again in 3 months.

I CAN'T wait that long, Jeff's going to call him back tomorrow to see if we can go to the old lab, and see it it's changed. If it hasn't I would think that it was just a difference in the labs. But if it has, I really don't want to wait 3 months. Although Jeff's scores after surgery didn't change, there were cells detected in the margin.

Any ideas for us?

bec

      It looks like the first lab does the sensitive PSA since the value is given to the nearest 0.01 and the second lab is a standard  PSA , which is sensitive to the nearest 0.1.  My testing has all been done using the standard PSA, so my results look like Jeff's latest number. This would be a question to ask your physician regarding which test are they doing, the standard or sensitive PSA? Take care and hang in there....Tim
Posted 1/28/2008 3:39 PM (GMT -8)
Thank you so much, everyone, for your concern and advice. Jeff called our new dr. today and got a call right back. I guess when he left the message he meant to say .01 He was mortified that he mispoke. I had already erased the message so I couldn't go back and recheck if I'd made a mistake - although I think that if he'd said .01 com[ared to <.01 I would have assumed it was the difference in labs, since I had read before that the numbers may be a little different. He told Jeff he was very happy with the score - I don't know, he sounded a little concerned on the recording. So I think he did initially misread it.

Anyway, the dr. did acknowledge that it's a hair higher than the old lab but that is probably because we used different labs, and his patients usually come back with a reading of .01. So maybe that's the lowest it goes for them. To be on the safe side we will test again in a month, so we have a new, consistant reading from this lab. (Good idea Strictly). We may go back to the first lab, too. I think I'm going to call the dr. about that tomorrow.

I probably sound a bit paranoid over such low numbers, but my dad passed away last Feb. from a very rare cancer that was not monitored correctly for reoccurrence, and then his health was not monitored well by his dr.s as he went through treatment. Although we ended up intervening on his behalf and thought he was taking a turn for the better, he developed pneumonia and wasn't strong enough to fight it. So my tolerance is kind of low - which is part of the reason we switched to this new dr. He is much more accessible and concerned.

So again, thanks for all of the advice and encouragement, it helped so much. We will update you on the new PSAs when he has them done.
Norskie, you will be in my prayers as you wait for your March test.

bec
Posted 1/29/2008 6:28 AM (GMT -8)
2Busymom

Great news on the PSA results and it appears it was just a mis-communications thing, that's the best news yet. Thanks for your prayers and I will move on to tackle this thing and become a source of information and hope as I move through the next stages, that's the way I am looking at, I have more to learn and work to do and somewhere along the line it will help others.

Norskie
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