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Psa lowering with active waiting

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Posted 7/14/2009 6:22 PM (GMT 0)
 

Thanks for this great forum

Not sure what to think about this,

Psa 2007 3.2
Psa fall 2008 4.9 two weeks later 4.4
11/2008 biopsy, T1c, gleason 3+3=6 low-volume prostrate carcinoma
1 of 12 samples malignant
Left lateral mid .05mm (5%)
CT scan negative
Consultation 12/2008 decided active waiting (diet) while researching options.

PSA March 2009 3.5

PSA July 2009     3.2

I've added Green tea, saw palmetto, garlic tabs, v8 juice daily

Increased broccoli ,tomato and cauliflower consumption, eat mostly chicken, fish, and veggies.

But i don't know if the diet has an effect or if the original psa was spiked due to activity.

So i am back to where i was in 2007.

The biopsy showed something but could be indolent.

I want to be happy about this but not naive

Welcome any thoughts

Thanks again

Posted 7/14/2009 6:41 PM (GMT 0)
All indications are that your PC is indolant. I guess you were just unlucky that the biopsy hit some stray cells, otherwise you would be free from the anaxity that any DX of PC carries. Many men over 50 are walking around with what you have and just don't know it.
Diet does have an affect on PC growth and your's seems to be working. As long as your psa doubling time is over three years (and your's most certaintly is) you have an almost zero chance of dying from PC.

The only recommendation I would make is to get a color doppler ultrasound to get a baseline. Changes from the baseline can be seen in future color doppler scans. Also find a doctor that specializes in Active Survelience, he can determine at what point if ever you need treatments.
The Prostate Cancer Research Institute website has a section on AS and a few papers by specialists on the subject.
JohnT
Posted 7/14/2009 8:29 PM (GMT 0)
brb, from what you show, you are still in pretty good shape for watching and keeping a close eye on things. Not the same as being 100% cancer free of course, but still, very low PC at this point, hope it stays that way for you.
Posted 7/14/2009 9:39 PM (GMT 0)
Great report. I can't say that the diet is responsible or not. But I can say that you should not change a thing. Keep a close eye on things and keep us updated...

Tony
Posted 7/14/2009 11:38 PM (GMT 0)
Be sure to get a good haircut because you might become a "Poster Boy" for watchful waiting (aka Active Surveillance) Great news.
Posted 7/15/2009 2:58 PM (GMT 0)
Thank you for your responses, i will check out Prostate Cancer Research Institute website .

My urologist still wants to do a biopsy in December (1 year) regardless of Psa count. What do you think?

Is a color doppler ultrasound available anywhere?

Thanks for the encouragement and advice.

Good luck to all of you
Posted 7/15/2009 3:31 PM (GMT 0)
It seems to me that many doctors consider annual (or 18 mo) biopsies to be a part of watchful waiting. One should also remember that a small fraction of prostate cancers produce very little PSA
Posted 7/15/2009 3:38 PM (GMT 0)
brb923

I am not a fan of a a lot of biopsies (has nothing to do with the "ouchiness" of the snips, has more to do with the possible exposure of pca outside the prostate, which is rare). So I would personally be somewhat reluctant, unless the doctor could come up with real good reasons why it should be done. On the other hand, if your psa was rising, it would be a no-brainer to see what is going on. Just my opinion.

BTW: I hope your watchful waiting continues going in the direction it is going. There is no sweeter words for a person who has PCa to hear..."your psa has gone DOWN to..."

Joey

 

Posted 7/15/2009 3:45 PM (GMT 0)
brb, with what you have written thus far, the December 2009 biopsy sounds like an unpleasant of course, but a good idea in your situation. Part of responsible "watching and waiting" involves multiple PSA tests and biopsies.

My first biopsy came up "clean" despite quickly rising PSA numbers. A year later, the 2nd one came up clean, well mostly, did show lots of PIN and as my urologist said, a suspicious area.
Six weeks later, the 3rd biopsy hit pay dirt, and the rest has been history. Had he not been suspicious about the suspicous area, and I had waited another year, my Gleason 7 PC might have really gotten out of hand, even worse than it worse.

So I think you are on the right path. I hope and pray that they keep finding nothing, and that your current PSA stabalizes. My best to you.

David in SC
Posted 7/15/2009 3:54 PM (GMT 0)
I tend to agree on the not over doing the biopsies, I had a freind who was way over checked and had a hard time with the surgery because all the scar tissue. Not sure how a patient can control this but if you have a choice I would spread them out as much as possible.
Posted 7/15/2009 7:17 PM (GMT 0)
Just a note...adhesions of the prostate to the rectal wall are more common than not due to biopsy. I was one of them...and this was only after one biopsy...caused some complications during surgery that turned a routine 2-3 hour robotic surgery into 5 1/2 hours. He was able to avoid severe damage to the rectum but it did leave me with a positive margin. I am not complaining, because I would rather have that than the alternative, but the point is...biopsies are not benign.
Posted 7/15/2009 7:46 PM (GMT 0)
The two best color doppler guys are Fred Lee in Rochester MI and Duke Bahn in Ventura Ca. It takes years of experience to use a color doppler and the skill of the doctor is much more important than the equiptment. Much like the average fisherman who uses a depth finder. He can see the bottom and an occasional fish, whereas the charter boat captain who does it every day can tell what type of bottom, rocky, sand, mud ect, ant the species of fish he images. Same equiptment different information based on experience.

JohnT

Posted 7/16/2009 2:15 PM (GMT 0)
Thanks guys

While we are at it, how do you find an outstanding urologist. Mine was referenced from my primary care doctor, i don't know much about him good or bad. Where do you look, and what do you look for?

Thanks
Posted 7/16/2009 2:25 PM (GMT 0)
it really depends on what you need the urologist for. Diagnostics is different than surgery for example. Depending on where you are there is likely good diagnost Uro's in the area. The really strong surgery Uro's are a lot rarer. I would ask any that you interview how long they've been at it, how many patients for any particular need you have, ask for their coarse of action, and most important get another opinion. Sometimes a good question is, "if you were me, who would you use". This can be a loaded question when they answer with a name in their own institution, at which point you ask, "if you had to choose someone outside of your institution, who would you see"...Still loaded, but you will likely get a good answer. And if they take offense, move on. No doctor should be offended by those questions.

Tony
Posted 7/16/2009 2:35 PM (GMT 0)
Thats a tough one...there are websites that can provide you info...but at an expense and so I don't recommend that.

But what I did, having the advantage of a large metroplex...I sought the hospital and the urologists that use that hospital. Then did the simple google on each doctor and compared credentials and years of experience. Then made an appointment with each to get that warm and cozy feeling and then asked for names and phone number of patients that would agree to talk with me. Bottom line...experience, experience, experience....just remember those three things and you won't go wrong regardless of any treatment sought.
Posted 12/22/2009 2:28 PM (GMT 0)
Yearly physical 12/14/09  PSA 4.2

Wow what a roller coaster ride.

Up a whole point since July's reading of 3.2

Went from 3.2 to 4.9, then 4.4 3.5, 3.2 and now 4.2  within a year.  Is this a normal fluctuation? 

Still following my nutritional regiment, although i relaxed it a little. (still no red meat but an occasional snack food. and some peanut butter). Got overconfident.

Urologist appointment for January 2010, I'll more strongly consider treatment this time.

Any advice?

Thanks this forum is awesome!

Merry Christmas to all

Posted 12/22/2009 2:42 PM (GMT 0)
A PSA test can be affected if you ejaculate a few days prior to the test. Not sure if you went this abstinence route prior to the tests
Posted 12/22/2009 3:16 PM (GMT 0)

You are experiencing the downside of Active survelliance.  It can be a mental nigthmare.  Every little twinge you have, a loose stool, or a higher PSA can throw you into a tizzy.

I think it is like having a time bomb in your crotch, not knowing when it will go off.

For me, while AS was not an option, I don't think I have the courage to live with that for very long.  Even now, after surgical removal and some good post-op PSA's, I still am jumpy.

Good luck, and keep us in the loop, and have a great Christmas.  Just forget it if you can.

Goodlife

Posted 12/22/2009 4:50 PM (GMT 0)
These are normal PSA flucutations. Go on the YANA site. Terry Hurbert did an experiment and took his psa daily over an extended period. The psa fluctuated widely from day to day and even in the same day.
The site has a psa doubling time calculator, plug your numbers in for every psa test you ever had.
If you really want to put your mind at ease then get a color doppler ultrasound. You will probably have to go 2 years with psa tests every 3 months to get a good read on what the trend really is in your case.
JT
Posted 12/22/2009 6:46 PM (GMT 0)
I disagree with John T. In your case you KNOW you have PC.

So, a rise of 1 point probably means you should do treatment. What does your doctor say?

Look at my PSA history below. The 1.1 point rise unfortunately started me on this wonderful journey.

Mel

Posted 12/22/2009 7:06 PM (GMT 0)
Dear brb:

I have read over the thread and I believe you have received excellent advice from the get-go from JT.  What I would advise now is that you do what he suggested all along, i.e. get a color doppler ultrasound and consult a physician who is experienced with AS.  I understand that some men on this forum would never have considered AS because of the anxiety caused by tests.  However, they fail to mention that they still have significant anxiety even after treatment...every time they have a PSA test.  Every man is different and don't be talked out of a perfectly acceptable process that you have started.  Frankly, if my stats had allowed, AS is the path I would have followed. We do have a couple of men on this forum who are on this path and doing well.

Respectfully disagreeing with Mel, the one point rise may or may not indicate that you need to have treatment.  However, and in line with the recommendation to use a physician who is experienced with AS. you probably will be asked to have another biopsy as that is pretty standard.  I have shown a link below to the Johns Hopkins "Expectant Management" (aka Active Surveillance) program.  Perhaps you will find this helpful.

http://urology.jhu.edu/prostate/advice1.php

Good luck and please let us know how you progress,

Tudpock

Posted 12/22/2009 7:21 PM (GMT 0)
brb, I started routine PSA testing in 1993. My first PSA was 2.5 and 10 years later in 2003 my PSA was 2.7. In between those years it ranged as high as 5.1 and as low as 1.5. I always asked the same question you did, is this normal? I always asked for a recheck and it always came back low. In 2007 my PSA rose from 3.2 to 6.5. The recheck was 6.9, and one final recheck at 9.1. That is when I threw in the towel and had a biopsy. As always with PCa, the decisions about what to do are not easy.

Carlos
Posted 12/22/2009 11:36 PM (GMT 0)

Tud:

I don't know -- in AS the big fear is letting things get away from you. That 1-point rise is significant. I guess the key point is to ask the expert and maybe get a few expert opinions.

Mel

Posted 12/23/2009 5:49 PM (GMT 0)
I just reviewed Terry Hurbert's experiment;
He took his psa every day for 28 straight days and his numbers were never the same. They ranged from 4.0 to 6.0 and his average was 5.08. This basically means that psa can flucutate normally around 20% from the mean. If you happen to take it on the two extreme days you can get a 50% increase.
So making decisions based on one psa rises within the normal distribution is highly inaccurrate.
The only way you can use psa is to track it over time; until you get a consistant trend. The best way to monitor it is to graph it.
I think that most of us are under the impression that just because the psa number is expressed in an accurrate format to the 2 or three decimal place it is highly accurrate. I can change daily or hourly.
JT
Posted 12/23/2009 6:51 PM (GMT 0)
I am also doing AS and my PSA goes up and down. I asked my doctor about this and he said the variance is normal due to the variance of factors at the testing lab.

Another question: is your prostate enlarged or becoming enlarged? Might this also affect your numbers?

I couldn't agree more with John T--if you're on the AS therapy and you want a better peace of mind seek out a color doppler test.
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