Re: [NewDx] PSA anxiety

[Guest guest]

In response to questions from list readers, following is a synopsis of my prostate cancer journey thus far. This will be mainly old news to many of you. If so, skip to the bottom for the latest results and decisions.

For those of you who think I am crazy to continue AS with a proven mutifocal cancer, I'll respect your opinions but do not agree. Clearly the current research shows that not all prostate cancers present equal survival or even health risks. On balance, all available evidence indicates mine still is an indolent, slow growing cancer. The most significant concern thus far is that the total cancer volume may be approaching or greater than the 0.5 cc suggested by most research as approaching clinical significance. However, neither the CDU nor MRSI scans thus far show any signs of seminal vesical, neurovascular invasion or penetration of the prostate capsule. In fact one of the leading MRSI centers could detect no change in status since 2007, even given biopsy results on multiple tumors. DREs show the prostate to be more 'firm' than the past, but no nodule has been felt.

I am not trying to avoid eventual treatment. Upon any indication of change cancer growth patterns or PSA kinetics I will leave AS for treatment. Meanwhile I'll continue to monitor research on treatment control of cancer and side effects and continue to enjoy an active retirement with a loving and supportive spouse.

The Best to You and Yours!

Jon in Nevada

PS: I'll finally add this history to Terry Herbert's YANA site (www.yananow.net).

One Active Surveillance journey, thus far:

2002: Had a biopsy in response to PSA increases from 1.6 in 1994 to 4.6 in 2002 (statistical doubling time 8 years). Results negative. PSAs affected by accute prostatitis attack.

2006: PSAs continued to slowly rise to 5.5 in 2006. Statistical doubling time remained about 8 years. Repeated milder prostatitis episodes. Repeat biopsy May 2006: 1 core positive, less than 5%, Gleason 3+3. Upon first biopsy in 2002, had done considerable research as to prostate cancer and treatments.

Had previously decided if ever diagnosed, would select DaVinci surgery by Dr. Mani Menon, Detroit, one of the early DaVinci "artists". Sent diagnostics to Dr. Menon along with biopsy slides for second opinion on pathology (confirmed Gleason 6). Dr. Menon responded that although I was a good candidate for DaVinci surgery, with a very early low-level cancer I could also consider, with minimal risk, doing nothing for the immediate future. This resulted in my pursuing more extensive research into prostate cancer-- diagnosis, growth kinetics, treatment options, and, what the heck is Active Surveillance...

June 2006 to January 2007: Had consults with a conventional surgeon, a cryo-ablationist, proton radiologist at Loma . Had an endorectal MRI with spectroscopy at UCSF (one small area 'suspicious' for cancer in same quadrant as positive biopsy), and a color Doppler Ultrasound (CDU) by Dr. Bahn in Ventura (single lesion identified in right mid PZ, 8x6 mm, right mid to base, probable biopsied tumor, no significant blood flow). Dr. Bahn suggested Active Surveillance or focal cryo.

With spouse reviewed research, consults, imaging results. Decided to defer treatment while pursuing Active Surveillance. AS protocol- quarterly PSA, annual % free PSA and PAP (prostatic acid phosphatase, potential indicator of metastatis), periodic CDU scans, compute PSA density from PSA and CDU prostate volume. Set up Excel spreadsheet to track PSA kinetics, including linear model used by Sunnybrook, Toronto, for following AS patients. Addressed diet (drastically reduce dairy products, further reduce red meat), Started low-dose generic lovastatin to reduce LDL (dropped from 150 to 75; total chloresterol from 200 to 130). Dropped average weight from 170 to 155. Tested for serum vitamin D and found low (21.8). Increased Vit D3(OH) to average of 50 by D3 supplements, gradually increasing to 10,000 IU/day.

2007-2009: PSAs bounce up and down between 4.16 and 7.24; average about 5.8. Elevevate during prostatitis episodes; drop with Leviquin treatment. Statitiscial PSA doubling time drops to over 20 years but with very low correlation coefficient (ie no real trend). Prostate size 58 to 62 cc. PSA density between 0.07 and 0.12; % free PSA stays around 15%; PAP stays less than 2.0. Series of CDU scans indicated suspected 'index tumor' has slight increase in size and vascularity. Another potential lesion noted near right base- believed to be due to prostatitis, no signs of lesions outside of capsule or near neurovascular bundles, no nodules found on DRE. 2008 request for repeat biopsy postponed due to noted prostate inflamation.

March 25 2009: PSA 5.66, prostate volume 60 cc, PSAD 0.09, no DRE nodule. Repeat biopsy using CDU to target suspicious areas. In addition to the 'index tumor' and previously noted potential lesion, a third site identified by CDU sampled as well as 5 other cores for spatial sampling. Tumors found: Right base: CDU- 9x4 mm, no vascularity; biopsy- Gleason sum 6, 40 or 60% (Bostwick) involvement, DNA ploidy. Right base to mid: CDU- 12x6 mm, 2+ vascularity; biopsy Gleason 6, 10% involvement. Right apex: CDU- not seen; biopsy- Gleason 6, 15% or 10% (Bostwick) involvement Left mid: CDU- small, nonspecific; biopsy- less than 5 mm ASAP or Gleason 6 (Bostwick)Consult and decision: Cancer multi-focal in right hemisphere, very small lesion in left may be ASAP or Gleason 6. Stage now T2A Decided to reassess in 6 months after followup CDU and MRSI at UCSF.

July 6 2009: MRSI at UCSF, 3.0T magnet. "Stable right to mid gland prostate tumor with corresponding metabolic abnormalities seen on spectroscopy. There is no evidence of extracapsular invasion or lymmphadenopathy". "...no evidence of seminal vesical invasion." Specific results identical to January 2007 1.5 T scan: Tumor estimated as 13 x 6 x 1 mm, 0.4 cc, small size 'close to the limit of resolution of spectroscopy." Although the results of the March biopsy were provided, the MRSI found no evidence of any but the original index tumor.

October 29 2009: CDU No significant change since March for lesions in right base, right base to mid (index tumor); right apex 5x7 mm; left mid small. No changes in vascularity. PSA 6.3, prostate volume 63 cc. PSAD 0.1, no nodule detected on DRE. Sample taken for PCA3 urine test; result 47.3.Consult and decision: CDU results show no progression in any of tumors since March biopsy. July MRSI showed no change in index tumor since January 2007 and couldl not detect the other biopsy-determined tumors. Upon review of all current papers on PCA3, it appears that no current study shows any correlation between PCA3 levels and cancer Gleason sum or volume upon biopsy or surgical pathology. No statistical change in PSA trend. Although cancer is clearly mutifocal, all evidence is that it continues to be slow growing. Decided to reassess in 6 months.

May 26, 2010: CDU No change in size or vascularity in tumors in right base right base to mid. Right apex.6x4 mm. Left mid 6x6 mm. PSA decreased to 5.2 January 28, then back to 64. (May 11)-- essentially no change in trend. Prostate volume 63 cc, PSAD 0.1. PAP 1.5 on May 11. No value seen in a repeat PCA3 test.Consult and decision: No evident change in tumors in last 14 months. Decided to continue AS. If no change in PSAs, repeat CDU at 12 months. Meanwhile continue evaluation side effects and cancer control for treatment options. Re: [NewDx] PSA anxiety

Jon, from one who acted immediately for a prostatectomy after a positive, but low PC biopsy reading (family history of PC helped my decision), I am curious if , along the way since '94, you have had any biopsies. I agree that all of us with elevated PSA should be constantly aware of our individual situations; and, most of us probably will pass on due to some other malady. I wish you continued good fortune. FYI, even though I am prostate free--two years--I am still anxious each time I come up for a PSA check. Seem to focus on a lurking lion waiting to pounce.Regards, Ed