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SILVER

Jon Nowlin and Janet live in Nevada USA. He was 63 when he was diagnosed on May 26, 2006. His initial PSA was 5.4 ng/ml, his Gleason Score was 3+3=6 and he says he was staged T1a, although from his narrative it seems his staging would have been T1c. His choice of treatment was Active Surveillance. Here is his story:

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 acute 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 Da Vinci surgery by Dr. Mani Menon, Detroit, one of the early Da Vinci "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 Da Vinci 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 cryoablationist, proton radiologist at Loma Linda. 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 cryotherapy.

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 metastasis), 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 cholesterol 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. Elevate during prostatitis episodes; drop with Leviquin treatment. Statistical PSA doubling time drops to over 20 years but with very low correlation coefficient (i.e. 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 inflammation.

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 (Atypical Small Acinar Proliferation - a condition that is sometimes misread by inexperienced pathologists as adenocarcinoma or cancer) or Gleason 6. Stage now T2c 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 lymphadenopathy". "...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 could 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 multifocal, 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 6.4. (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.

 

UPDATED

March 2011

 

 

Last November/December I participated in a clinical trial at UCSF testing a new intravenous contrast agent for prostate endorectal MRI scans. A KGO TV news report on the trial is available.

I was in an early group with the lowest concentration of the pyruvate contrast agent and it did not improve the MRI resolution for my tumors This may be due to the small tumor size (the largest is only about 0.4 cc) and low Gleason (3+3). However, the researchers are encouraged that the results are improving with higher pyruvate concentrations.

The clinical trial is still recruiting. I'd encourage anyone on Active Surveillance with no prior treatment to consider participating. It involves two endorectal MRI scans- the first a baseline study with spectroscopy and the 3.0 T magnet. Then a scan with the intravenous tracer. I had no side effects from the tracer.

For more information on the trial, contact UCSF: Christopher Soto at 415-353-9452.

However, with my small tumors and low Gleason, I still find the color Doppler Ultrasound scans with Dr. Duke Bahn (Ventura CA) more informative than the current endorectal MRSI scans. Hopefully the final results of the UCSF clinical trial will show the experimental contrast agent to provide significantly higher resolution for small early tumors.

My latest PSAs are in the high 6's low 7's, up a bit from the prior two years (bounces between 5 and 6.5). I'll be getting another color Doppler Ultrasound scan this spring to check on the little beasties.

Meanwhile life is good! I'm building a new kayak, re-building an old expedition-grade strip canoe built in the mid '70s, and cross country skiing when the current series of storms in the Sierras abate enough to let us get up to the high country.

The Best to You and Yours!

Jon in Nevada

Jon's e-mail address is: ccnvw@aol.com