YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Bob Smith and Laura live in California, USA. He was 60 when he was diagnosed in October, 2007. His initial PSA was 4.2 ng/ml, his Gleason Score was 3+3=6 and he was staged T1c . His choice of treatment was Active Surveillance. Here is his story.

For years I had a PSA test with my annual physical. While never steady the result was always less than 2.o ng/ml. My work had involved 8 years of heavy international travel, during which I gained about 45 lbs, developed high blood pressure, unhealthy blood fats, and generally was increasingly more depressed year by year. In January 2005 my then-wife announced she was filing for divorce, just after my employer had declared bankruptcy (coincidence?). This prompted taking stock of my life, one finding of which was that my testosterone (T) was 120 - lower than the minimum of "normal" range.

I wanted to try T replacement, and both my urologist and my GP agreed to try it. For about a year, I used Androderm and a variety of supplements. My T rose to mid-range, my blood chemistry became picture perfect, my weight dropped to 195, I got in great shape, and even remarried my true-love. Just after our honeymoon in September of 2006, I had another physical and PSA had risen to 4.8. My uro put me on a round of antibiotics and remeasured PSA, which dropped to about 4.2. A biopsy resulted in following: 33 gram prostate size, soft texture, 1 of 13 cores positive, 3+3, T1c, - DRE. The positive core was 18 mm long, .5 mm of which was found to be cancerous. Uro said to stop T therapy, and re-biopsy in three months.

In February of 2007, all 14 cores were negative and PSA had dropped to 2.5. Uro suggested Active Surveillance but said I needed to hear from others, so he referred me to UCSF Prostate Center where there are bona fide experts in the field. In May of 2007, a CDUS-guided biopsy found no cancer. I became a member of a research project studying diet and supplements for AS patients. So far, quarterly PSA measurements have been dropping (latest 2.3), an MRI/MRSI showed no sign of cancer, first annual re-biopsy (fourth in two years!) was negative.

I am happily married, have maintained an active exercise program, have changed diet to reduce saturated fat, meat and dairy, increase fruit, vegetable, grains, etc. Have eliminated most supplements. No interest in operations, radiation, freezing, or ultrasound until monitoring shows I no longer qualify for AS. I read websites and research on the subject daily.

My main complaint is the lack of support for AS. When I read of others with low level PCa findings who have had the gold-standard operation, I wonder if I'm risking my life just to keep my potency and urinary control. On the other hand, I value researchers like Klotz who maintains there are legitimate ways to monitor the disease and that the course is different for many men. I happen also to believe that most men have something similar to what I have - microscopic, "occult" sites of bad DNA in their prostate which will develop in time. I believe the testosterone replacement simply increased the metabolic activity of such a site and that is what caused my PSA to rise initially. I also believe that biopsies are like shooting an arrow into a haystack in which paint buckets are hidden. If there is one quart bucket in there, the chance of finding it is small. If there are numerous 10 gallon buckets, this is a different situation. The results of a biopsy are not perfect, but they are projectable. More to come.

 

UPDATED

July 2008

 

 

Quarterly AS review at UCSF showed PSA had dropped from 2.9 to 2.3, DRE negative. (FPSA not determined as this is normally done only for PSA above 2.5) No change otherwise - still completely asymptomatic, maintain diet, supplements and exercise as per usual recommendations. Eat cruciferous and other dark color vegetables, plus small seedy fruit daily.

Planning another biopsy sometime in early fall, perhaps with Duke Bahn.

Good luck to all who choose to go this way.

 

UPDATED

February 2009

 

 

November 08, had followup MRI/MRSI using the 3T equipment at UCSF. Results all clear.

January 09, quarterly checkup at UCSF. PSA 3.0 ng/ml, - DRE, color TRUS-guided biopsy, 18 cores negative. Won't repeat this for 2 years.

Continue veggie diet, regular exercise, and remaining "cautiously optimistic", but three friends with substantially different diagnostics had prostates removed on short notice in the past 9 months.

Danger is real.

 

UPDATED

October 2009

 

 

Since last update, I had routine exams - PSA/DRE test every 3 months. An 18 core biopsy was done last January, and was entirely negative for PCa. Most recent PSA was 2.6. I'd been thinking for some time to visit Duke Bahn in Ventura, CA for a second opinion. AS is fine but there is always a nagging feeling that maybe you're fat, dumb and happy, and meanwhile something very bad is secretly happening down there - this despite being on even the best program of surveillance.

So, while I have had nothing but good opinion from Shinohara et al at UCSF, I decided to go to Ventura while the going was good. Dr. Bahn was very descriptive of what we both were viewing on the vidscreen during his CDUS exam. He found nothing to biopsy.

What came out of his exam was a report that finally convinced me I can relax about being on AS for the long term. After three years of quarterly PSA tests, 4 biopsies, and 2 MRI/MRSI scans, not much has changed and nothing has been found that confirms the problem revealed in the first biopsy 3 years ago. Bahn noticed some calcium deposits that he said were the cause of PSA fluctuations (usually between 2.2 and 3.0), and commented that in fact the level of inflammation seemed to be than that reported on earlier CDUS scans at UCSF. (I interpret this to have resulted from my improved diet, but who knows?) His summary: I have what he termed "autopsy cancer" - meaning, obviously enough, I am less likely to develop significant prostate cancer, and more likely to be one of those guys found to have had prostate cancer after dying of something else.

The main point here is that until more definitive tests are available, it can take awhile to find out what kind of PCa you have. There are downsides to a diagnosis of "insignificant" PCa: anxiety, inability to get life or medical insurance, invasive tests, etc. But there are in fact some upsides as well: I recall one report that showed men who get diagnosed tend to become healthier in other respects because they adopt healthier diets and lifestyles. I certainly did this, and have benefited from it in many ways. Bottom line: AS may or may not work for you long-term, but it does work - and for as long a time as you qualify for the program you should try to relax and enjoy life.

Bob's e-mail address is: toodleooo@earthlink.net