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Posted 3/21/2014 12:16 PM (GMT 0)
Looks like my membership in the zero club is about to expire. My last PSA has risen once again. My Uro normally starts treatment at 0.05 and I'm closer than ever to that number (0.035). I've changed my diet, lost 13 lbs., have great blood lipid numbers but PSA still going up. So depressed knowing the future is not all that bright.
Posted 3/21/2014 12:24 PM (GMT 0)
Not sure why you're worried? I'm 0.06 after 3 months and I'm not concerned. Why is a 0.035 causing you alarm? It's nowhere near 0.2. Those ultra sensitive tests can bounce around.

What is the clinical trial you're speaking of?
Posted 3/21/2014 12:58 PM (GMT 0)
0.035 is nothing to worry about. Zero Club is good until 0.1. As mentioned, ultra sensitive tests can bounce around. I also would question pulling the trigger on additional treatment at 0.05. Seems a little early from what I've read. Good luck and hopefully future tests will ease your worry.

Tom
Posted 3/21/2014 2:14 PM (GMT 0)
My Uro put me on clinical trial of high doses of Omega 3 fish oil to fight inflamation. Six 1200 mg daily. It was supposed to be a year long trial but my PSA jumped a little after two months so I dropped out of the trial. My Uro does not support the idea of fish oil being bad for PCa. My concern is the continuous rise in PSA. I'm 3 years out from RP and it's gone from .01, .021, .025, .028, and now .035. That's not a very positive trend. I'm sure SRT is just around the corner. Sadly, I just started putting my life back together (I'm retired) and became a Certified Fitness Trainer with a class of around 30 seniors whom I love working with.
Posted 3/21/2014 3:09 PM (GMT 0)
Your PSA numbers are still very low and undetectable by definition. Before starting any radiation treatments, I would look at dr. Snuffy Myers web posts. He treats people with low PSA after prostatectomy with Avodart and has had success in keeping the PSA at bay without other salvage treatments. Good luck.
Posted 3/21/2014 3:56 PM (GMT 0)
Viperguy,

I agree with the others to wait until your PSA starts climbing toward the 0.1 or even 0.2 level. This is because several studies covering over 10,000 and 14,000 patients who have had Gleason 6 pathology after a prostatectomy have demonstrated no metastasis to the pelvic lymph nodes. see http://www.ncbi.nlm.nih.gov/pubmed/22531173
Posted 3/21/2014 4:24 PM (GMT 0)
If you were a G7 or above I would be concerned, but if your post op path stayed a G6 and the volume is reflective of the low volume that was on your biopsy and there was no ECE then you have little to worry about. SRT now would definitely be over treatment in your case.
Posted 3/21/2014 4:55 PM (GMT 0)
I agree with the others 0.035 is still very low....you will need more "data points" to see what is really going on.....I would not rush into SRT with those numbers (SRT is not without potential risks)...even if you r PSA starts to take off there is so much available to treat. I'm 12 years into a metastatic Pca and still doing reasonably well.....I am castrate resistant now but still have numerous options.
Posted 3/21/2014 6:03 PM (GMT 0)
Viper, I'm certainly no doctor and I tend to agree with others who have posted on this thread suggesting that you go slowly on this. At the very least I would suggest you get a second opinion from a prostate oncologist before you pull the trigger. With a pre and post G6 and low pre-op PSA a .035 still sounds pretty good to me.

Jim
Posted 3/21/2014 7:50 PM (GMT 0)
Viper - What did your post-op pathology look like? Were there any indications of positive margins or extra-prostatic extension? If so, that could explain the reason for your slow PSA rise and that you may have either cancerous or benign prostate tissue in the area where your prostate was.

I'm sort of in the same boat. My post-op pathology indicated Gleason 6, EPE and a small focal margin. And like you, I am watching my PSA trend upward (see link in my signature). I have no doubts that SRT is on the horizon, it's just a matter of when.
Posted 3/22/2014 1:33 AM (GMT 0)
Viper, I think you know my feelings on your situation. Beware of self fulfilled prophecy, manifestation of thoughts may be quackery to some, but doesn't mean it is not factual. Science will prove that within 30 years or so, in my view. " As a man thinketh…….}" Not allowed to mention the one who spoke that. That very fact says a lot about about the person in a counter intuitive way. Think on that, a bit. Im not saying to be a Pollyanna, which in your case wouldn't even be required to have a positive feeling about your psa status. The nice thing about " human nature" and what distinguishes us from " animal nature" is we, in fact, can change our " human nature" Its done all the time, I mean all the time. All the progress made in all the fields that have given our species the civilization we have today, not perfect, but always in spurts and stops improving, Never once in a long term view retreating, was/is done by woman and men who did change their "human nature". just saying, tee hee
Posted 3/22/2014 5:35 AM (GMT 0)
Here's another vote for hold your fire. Those are very low numbers, and even if the trend seems to be upward you could be years away from needing further treatment, if ever.

I just pulled my file out of the drawer to check my numbers and dates. I hit .04 in Dec. 2004, which was 2 1/2 years after my open RP - pretty much the same amount of time since your surgery. I then hit 0.1 ten months later in Sep. 2005. But then I stayed at 0.1 for 3 1/2 more years until August 2009 before having any more upward movement in PSA. I eventually opted for Salvage radiation in Jan 2010. I'm now 4 years after SRT and my PSA is 0.00.

So even though I did ultimately need SRT I was able to postpone it for over 5 years. And when I did finally pull the trigger I ended up with a total remission that has lasted 4 years thus far.

SRT has real risks, and avoiding or at least postponing these risks is, in my opinion, a good thing if you can do it without significantly increasing your risk of runaway PCa. Among these risks are an increased probability of ED if you don't already have it from your surgery, temporary or permanent increase in leakage or urgency issues, possibility of rectal bleeding--which in my case began about 10 months after SRT and gradually resolved over the course of a year or so -- though I still get occasional occurrences.

I'm not knocking SRT - I have no regrets. I had high risk PCa and at the time of my SRT I also had a lymph node involved. I can thank SRT for being PCa undetectable today. But I also have no regrets about waiting until my PSA exceeded 0.2 before agreeing to do it.

Jim
Posted 3/22/2014 2:09 PM (GMT 0)
Thanks for the words of encouragement. I have never been able to control my worry gene. For me the worrying has been worse than the PCa. I think about PCa every waking moment. I'm even taking anti anxiety meds which only help a little. I know we can't live forever, non of us can beat father time. I just view my future as some sickly old man wasting away. I'd rather not be around than live life like that. I'm not afraid so much of dieing but suffering and becoming dependent on others for care.

I want this PCa out of my body once and for all. I've done everything, changed my diet, exercise like crazy, lost about 15 lbs., lowered my blood lipids and the PSA numbers keep going up. I have no control over my body anymore. As you can tell, the stress of having this crap is eating me up mentally. Some say pull the SRT trigger at .05 and others .1, I don't know what to do.
Posted 3/22/2014 4:37 PM (GMT 0)
Viper... you were a Gleason 6. iSpark just posted about being 365 days out from surgery. Go look at his PSA numbers. He is celebratory and his numbers are nowhere near as good as yours but he seems to be fine and fine with it.

Nobody can tell you how to feel...you're going to feel how you feel. However, I hate seeing you tear yourself up over this as the power of the mind is a real thing and has effects on our bodies.

You've done a tremendous job getting yourself in better shape. I've done similar things. That alone should make you feel better mentally knowing you've changed and exercise has positive mental benefits in and of itself.

Be thankful you're not in your 40's and having Dx. I'm no doctor or soothsayer but I gotta believe you're going to be just fine my friend. Relatively speaking I can't think of too many of us who wouldn't take your situation and run with it. I'm now 46 and to know I'd have those numbers in my 60's? Man, are you kidding me? I could get 15 more years and only be at 0.035? Running like Usain Bolt on that.

Hang in there.
Posted 3/22/2014 4:49 PM (GMT 0)
Worry gene??? We are all doomed, if that is factual, more so if true. I know I am supposed to " support " all and everything here to be regarded as "nice guy " I do empathize, but do not sympathize. If I did I would need ski's on that slope. I hope Viper can at least empathize for me and leave any sympathy to his personal view of when that is applicable in his minds eye.
Posted 3/22/2014 4:49 PM (GMT 0)
I can relate to the worry aspect of this whole ordeal. Don't know if this would be something that would help you, but because these ultra sensitive tests can bounce around, from the very beginning I asked my doctor to just tell me "undetectable" or not. I don't even want to know the exact number. For me it works. I have no idea if my numbers are up or down, only that I continue to be undetectable, just like you still are. Knowing or not knowing the exact numbers isn't going to change the ultimate outcome--whatever it is. If my doctor is concerned, he will tell me. Until then, I've decided to concentrate on being undetectable--hopefully forever.

Best wishes,
Tom
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