UPDATE: Psa dropping, supplements working?

Jmon,

Boy, our cases line up pretty well. My PSA bounced around upper 3's just before diagnosis. Four biopsy cores +; three were 3+3 in low teens or less % of those cores; one core 4+3 at 5% of core. LARP also with a City of Hope guy. Focally pos margin on two of the path slides.

Funny thing on my surgeon choice (but I'm not laughing). One young one who offered to "carve a little wide" around where the biopsy showed close to capsule. But she couldn't convince me she had experience--said they worked the robot in pairs, which sounded too much like a trainee type operation. So no go there.

Next, saw a radiation guy who offered seeds or several types of radiation. One comment he made was with biopsy showing cancer near prostate side, surgery might not get it all but radiation probably would-- "just do it right the first time" was his approach. He was very experienced (and maybe very right).

Finally, the surgeon chosen, also a City of Hope guy (he knows your Dr. Kawashi); specifically told me he doesn't go wide around the capsule. Even when I practically begged him to. He said same as Walsh's book--that like when lightning strikes a tree, the grass around the base is killed, so are PCa at capsule margin, due to blood supply disruption, etc. That body's immune system can be counted on to help kill off any remainders. Also, that even if path shows small margins, it may be due to handling during surgery-- hand off to nurse, then to pathology; or just a "tear in the wrapping paper", basically an "artifact". So, I have pos. margins but uro says hold off on ART. So maybe that's how City of Hope trains them. I don't know.

So, I have been getting my own ultra-sensitive PSAs about every 6-10 weeks through Labcorp. If it starts rising, guess I will have to decide then what to do. I am about 63 now. It is tough to be paranoid about this all the time. But perhaps it's not paranoia if something is really trying to kill you?

I know, boy do I know, about the fear of BCR. Only four months out, I have no PSA, good continence, ED is coming along ok. Really do not want to think about BCR but I do. Probably more than is healthy.

Best of luck. Please post with updates. Hoping I don't get a recur, but if so, it would help to know what medical advice you got, what you decide and at what point. I do not have an oncologist at this point.

Regards,
Robert

Update. Just had my latest PSA meeting with my urologist. Now at 0.12. It had been 0.11 since April.

It was June 2011 when I first noted it beginning to rise , 6 years after my DaVinci op. At that time (6/2011) it was .06. Now 0.12 so it has doubled in 19 months. It has gone up .01 in 9 months.

Dr. said, considering details of my situation, he wouldn't want to see me start getting zapped 'til i get to at least 0.2.

I am 65, in excellent health (other than PC) and fit. No continence or ED issues. So I certainly am in no rush to jeapordize that. Doc says just keep checking the PSA every 4 months. He thinks I may get another year or more before radiation becomes necessary. Of course I am hoping for some medical breakthroughs before then (for all of us).

At some time I will have to start searching for radiation docs so any reco's or warnings on that would be appreciated. I haven't contacted the team in MDR that was recommended yet. Maybe after my next PSA check.

Happy Holidays to all.

Thanks for the reply Magaboo. I think you are looking pretty good holding at <.04.

In my case: pre-op psa between 3 & 4, gleason 3+4, positive margin at apex and over 5 years (nearly 6) before my psa started to rise, long doubling time. My doc feels that it has a better than average chance of cure with radiation to the prostate bed even if we wait 'til my psa gets up to .2 or even higher.

He is reluctant to intrude on my good quality of life at this point as long as my psa is rising at such a slow pace. No way to know what is the right decision but, after hearing so many radiation horror stories, I am willing to gamble a bit to maintain my QOL for as long as I can.

Happy Holidays to you.

Hi Jmon
My history is pretty similar to yours. I had open RP surgery in 2002. My PSA remained at .02 for a couple of years and then began a very slow rise. It hit 0.04 on 2005 and was at 0.1 a couple of months later but then stayed at 0.1 for 4 more years. In 2009 PSA began doubling -- 0.2 in April 2009 then 0.4 in August.

My Uro's advice throughout this very slow rise (at the time -- bear in mind current thought and practice may now be different or other doctor's may have different opinions) was that I should consider SRT when PSA hit 0.4 and also to then go for it before PSA got much higher. This was consistent with what I'd been reading in the medical literature at the time also.

I had SRT in Feb - March 2010 (67 Grays total over 36 or 38 treatments). My PSA at start of SRT was 0.44. The Radiation Oncologist also identified an enlarged lymph node which he also targeted during RA treatments.

I am now a little short of 3 years since SRT and my PSA as of two months ago was reading 0.00. I did have one test about a year ago that bumped to 0.01 but have since then tested twice at 0.00. So it's clear to me that the SRT effectively knocked back a local recurrence to undetectable levels.

Whether the PCa is gone for good is anyone's guess at this point. I know statistically given my history (seminal vessicle involvement, lymph node, etc.) I should have something less than a 1 in 3 chance of long-term remission or "cure" if there really is such a thing. But so far I have done much better than either I or my RO expected.

So you'll have to make your own decision on treatment based on your comfort level with the obvious risks and with the advice of your doctors.

In my experience I can say that my Uro is always upbeat and optimistic -- but, I'm sure that is in part a facade he projects to assure his patients, and I take that into account. On the other hand my RO is much more openly statistical and has told me he is pleased but surprised by how well I've done -- e.g., "I guess, someone has to be at that end of the curve."

But so far, so good and I hope you are able to do as well.

Jim

Jmon,

Sorry your psa is on the move...but it seems very low and slow. Two words that are music to most PC guys. But I realize it's been so many years and you were thinking you were done with it.

You seem to have a real concern about getting radiation. Most guys I've run into have done fine with it. I understand there are exceptions and some real world stories right on this forum, but the vast majority of guys have had little to no side effects.

I may have missed it, but what is your gleason and what were your PSAs leading up to surgery?

Jerry L.

Thanks for your replies!!

Tony,
At this point I will continue to monitor psa and if/when it begins to accelerate or rise significantly I'll seek consultation with the MDR team that you mentioned. Also I should start getting a handle on local radiation docs. My uro recommended Kenneth Takita. Don't know anything about him yet but his office is about 5 minutes from my house -- convenient.

Jerry,
To answer your question, I hadn't had a complete physical since I was 40 years old. Decided to have one in 2004 at age 57. PSA came in at 4.0. Doc sent me to a urologist. PSA check with him came back at 3.9. Saturation biopsy came back with 3 cores positive, mostly 3+3 with some 3+4. Went to City of Hope for DaVinci (Aug 2005) where my pre-op psa came back at 2.6. Path report confirmed 3+4 and identified positive margin at apex.

As I write the news is on the tube. The horrific tragedy at Sandy Hook tends to put things in perspective.

I try not to worry about recurrence, but realize there is always a chance it might someday come. I bookmarked the following thread if that day comes for me.

www.healingwell.com/community/default.aspx?f=35&m=2541571

Thanks guys,

I am taking every supplement that has ever been shown to slow down cancer progression. The mix gets adjusted constantly as new info surfaces. Don't know what, if anything, is working but it may be the reason for the very slow progression of my psa.

My diet is good and healthy but not extreme. I am active and have a BMI around 25 and am in very good health (other than PCa). Just FYI here is what I take:

Pomegranite extract
Curcumin
Zyflamend
Resveratol w/quercitin
Propolis
Coriolus mushroom extract
D3
Ginger
CoQ10
astaxanthin
Lovaza (prescription strength fish oil)
I am addicted to low sodium V8 juice so get my lycopene.
Also drink plenty of green tea.

Again, I don't know if any of these are doing a thing. But I feel great and, if they do nothing at all, the worst it has done is cost me a few bucks. I'll take the chance.

Hi All,

Just an update. Had my 4 month PSA and it has ticked up again another .01 to 0.13. Not a big move but still going up . It's been 7 years, 8 months since my date with the DaVinci robot and it is really a drag to think about getting zapped at this point. But, my Uro is now begining to encourage me to consult with radiation oncologists.

Doubling time, per an online calculator, is around 2 years and my pathology wasn't bad other than a positive margin.

It is a real dilema trying to decide how long to stretch this out. Could be another year or so 'til I get to 0.2 but some docs are saying the earlier you zap, the better your odds. But, as I have mentioned before, my QOL is excellent and I'm in no rush to jeopordize that. Not sure what to do. Next PSA check in August.

I welcome any input.

Hi Dave,

No scans yet. DOc says it would be highly unlikely for anything to show up with a PSA of 0.13.

Do you have different info?

Thanks

Hi Jmon,

Like you I had a long and very slow rise in psa over a number of years (see my signature). Even after it rose to 0.1 it then stayed there for a three years. My uro recommended, and I agreed, that we should consider SRT when my PSA hit 0.4, which is what I did. about 7 years after my surgery I had a sudden increase in PSA rise: Oct 08 = 0.1; April 09 = 0.2; Aug 09 0.4. The sudden acceleration of doubling time and reaching the threshold of 0.4 seemed to me to be a clear message that it was time for SRT.

If I had it to do again, I'd do exactly the same thing. If my psa was still rising slowly and was in the range that yours is, I would wait -- especially given that I'd seen mine rise before and then level off at plateau of 0.1 for three years before it then started moving again.

Thus far my SRT has been successful. It is now 3 years since SRT and my psa is reading 0.00.

I am sorry for your rising psa, I can only imagine how I would feel if my psa goes up again. As signature states I am a gleason 6 with now close to 5 years of 0 psas. I take TRT (testosterone replacement therapy) due to depression, brain fog, thinning bones, no libido. I know I may be rolling the dice on this decision for sure. But T makes me feel significantly better. Maybe I am burning myself on this one. You were lucky with no ED issues from day one, I have always had to use trimix since surgery. So I have less to lose than you. I know I would do SRT in a heartbeat  if my psa rises, because I want to prolong my life, no matter what the odds  if I can improve them. I dont't really know what number would be the starting point, but I would do it for sure...................