Posted 7/8/2013 2:03 AM (GMT 0)
Komatta, I may be one of the few here that can *totally* empathise with where you are right now. I may be completely in a different path than you are, but your current position sounds vividly familiar. I'm just another dude with this rotten disease, so take anything I say here with a grain of salt. All I can share is my history and limited knowledge; your urologist is your best resource.
I'm not sure if what I'll say here will be of any use to you, but if I could talk to my past self in your position, I'd have a couple of suggestions!
Your situation sounds very close to where I was about 10 years ago. This is my signature from just a few weeks ago, showing the lengthy history I had with elevated PSAs, low free PSAs, and biopsies, and my eventual outcome now:
Age 55 Dx 4/16/13
G 9 (2 cores 5+4, 4 cores 4+5), 6 of 12 cores positive, 80% PCa in half the prostate
Date PSA fPSA
3/13 5.2 12% PCA3=31 (concern since >25)
9/12 4.1 15%
... (4 year possibly unwise hiatus)
9/08 1.84 na
7/06 1.95 na
6/05 1.98 na (fPSA isn't checked with PSA so low)
5/04 3.3 10%
2/04 neg color doppler biopsy (12 cores, Dr. Fred Lee, Rochester, MI), started low-dose aspirin
2/04 3.3 na
8/03 3.3 7%
1/03 neg biopsy (12 cores)
1/03 5.2 8%
9/02 4.9 7%
7/02 neg biopsy (6 cores)
6/02 4.5 9%
5/02 5.3
Back in 2002, 2003 those PSA numbers and fPSA pretty much said I had PCa then according to numerous studies. A bit panicky, I left no stone unturned in testing at the time, rather convinced I had it and just needed to get it confirmed by biopsy. It made me crazy, causing me to spend virtually every lunch time I had for about a year at the local hospital's medical library, reading study after study and chasing down all the references in those studies. I spent more time in the Journal of Urology than a lot of doctors, I bet. Two 2" thick notebooks full of copies of studies resulted from that effort. Around that time, my dad had his prostate removed due to cancer, so that further fueled my concern.
Living in southeast Michigan then, with great health insurance, let me really pursue this with some of the best medical attention available.
After no less than Dr. Fred Lee in Rochester, MI did my 3rd biopsy, color doppler ultrasound guided, finding only inflamed tissue and no evidence of cancer. I embarked on daily low-dose aspirin to help the inflammation. My PSA came down over the next year or two, and finally declined to less than 2. At that level, everything seemed ok. So after 3 years like that, I decided not to keep putting myself through testing anxiety every year, and wait until 55 to jump back into it again. After all, the odds of finding cancer after 3 negative biopsies are very low, and the whole medical community has been buzzing about over testing and over treatment. So, easy to let it go. If we find something starting at 55, then we'll look at it then, says I.
Concerningly, one study said even if PCa wasn't found at the time, a really low fPSA was indicative of likely future high grade cancer. (So, guess what happened to me? Exactly that!)
But, and that's a *big* but, in hindsight I should have at least maintained annual PSA checks. Maybe we'd have caught a rising PSA, but who really knows? No one would have biopsied in those years where it was so low even if I paid them privately. Even before just last September, it would probably have been below 4.0 and not worth biopsy. PSA velocity (rate of increase) has been said not to be enough for justifying a biopsy if below the concern level of elevation. I don't know if that's true or not.
There were no good guidelines 10 years ago for people with elevated PSAs and multiple negative biopsies. It doesn't look like much has changed. All they said back then was to continue monitoring, and biopsy if warranted. If I had to do it over again, I'd have a PSA every year, and if it was above the concern level I'd consider another biopsy. Or, at least the PCA3 test.
The PCA3 test is really simple to do in your urologists office, just a somewhat more vigorous than normal DRE followed by a first-catch urine sample of an ounce or two. They send that off to the lab to see how much RNA there is in there from cancer-type cells. The result is a percentage value, and if it's over 25 then there's more concern of cancer. If it's really low, then that tends to rule it out. Being high doesn't seem to confirm it, it's just indicative for a biopsy.
So, to your questions
1) I don't know what else could cause low fPSA. Inflammation is usually mentioned as the other cause. It was prophetic for me, but many years later.
2) You're doing exactly the size/PSA calculations I found. Unexplainable PSA level for the observed prostate size might be related to production by tumor. It's not conclusive as far as I can tell.
3) I had a 3T MRI after diagnosis. Very clear images, but I have a big ol' tumor in there. Small early stuff is probably really hard to see. The color doppler technology is impressive, but needs to be used in the hands of an artist. Dr. Fred Lee or one of his directly trained followers would be my preference. To this day I wonder if my PCa was already in there, and even that technology just couldn't see it. Here I am 10 years later with 5+4 high-volume freakin' PCa, and it's even in the same side of the prostate that caught Dr Lee's attention back then. Just seems really suspicious. So I'm a little skeptical if any imaging technique can actually see it early.
4) How long between biopsies? No idea what the minimum is, but they take like 8-12 weeks to heal up from one. I figured 6 months to a year between was good enough.
5) I'd sure be in favor of a PCA3 test. It's easy, though a little pricey (about $350 here). My insurance covered it. It's not conclusive, but if the number is elevated it is indicative that a biopsy might be warranted.
6) If they find cancer by a biopsy, that's just information. The key is what you do with that information. Over treatment seems to be the issue, mainly. There are LONG threads on here about overtreatment. The problem is people freak out when told, hearing something like, "You have cancer blahblahblahblahblah", hearing nothing else after the c word. If it's low grade, low volume, then it may very well be just something to monitor. If it's high grade, then congratulations you found it and then have more tests and decisions. It seems to me that it would be worth knowing either way.
The standard 12-core needle biopsy is nothing to dread. It's pretty much a cake walk, with really minimal discomfort. Sure seems like a reasonable next step, but it may still be negative. There are saturation biopsies with lots of cores, but I don't know what conditions indicate to do one of those. They're kind of a big deal, involving anesthesia.
I don't know what else to suggest other than annual PSA re-checks, maybe with PCA3, and biopsy if still elevated. If something's really developing, eventually it will get big enough to detect. With all the fantastic tech available today, the primary issue of whether or not one has PCa that has to be treated has no perfect way to be answered.
This got kind of long. Hang in there, and try not to make yourself too crazy with this. I know how that is, and it's likely the assurance you're seeking just isn't yet available.