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.
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.
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.
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.
Sorry to have neglected updating for past 2 years (!) but time passes quickly. I note that on the summary I'm listed as "Cancer Free" but feel this is not justified. A positive biopsy is still positive. I prefer to say "I've got PCa, you just can't see it." [I have altered Bob's designation as he has requested, BUT.....he may in fact be "Cancer Free". Spontaneous Regression may occur at a greater rate than is generally accepted, according to one Norwegian study - this Forum Discussion on the subject may be of interest.]
Here's my latest...
Still on UCSF AS program, participate in their research protocols, usually meaning they monitor PSA quarterly and biopsy biennially. I also have had four "research" MRI/MRSI scans done on the UCSF 3T machine, one with a contrast agent. I'm due for another biopsy at end 2010.
PSA continues to bounce around between 2 and 4, mostly running in the 2.x range. Last week it was 2.9 for example. Up from 2.0 in July, down from 3.4 in April, etc.
MRI/MRSI done in August showed nothing resembling PCa.
Quarterly DRE has always been "unremarkable". My UCSF uro is about 45 years old, and has never checked his own PSA. I' be curious were I he. My "personal" uro tells me not to pursue treatment without his review. I believe him.
As to diet/lifestyle, I've dropped off from my original "shock and awe" approach with nutraceuticals. It's a lot of work swallowing 100 pills everyday. I still take vitamin D, fish oil, and a few other select items. Vitamin D finally hit 50 after taking 10,000 units (Vitacost brand) a day for almost a year.
Finally, as a food scientist I know we are what we eat, and most of what I eat still comes at least from the perimeter of the grocery store, but preferably from fish mongers and produce stands in Chinatown. Still take 25 grams psyllium, 20 grams ground flax, and 20 grams whey protein isolate/day. Eat green leaves and other bitter things.
Late January, 2011, I had my fifth biopsy. 17 cores, all negative, DRE negative, PSA 3.1 (down from 3.7). Next biopsy in two years, PSA and DRE to be done at six month intervals. I usually get additional PSA readings by having the test done in conjunction with other lab tests.
No changes in diet, activity, medications or supplements. Still not comfortable enough with the idea, that lack of a second positive biopsy represents spontaneous remission, to modify the AS protocol.
Results of quarterly PSA; test: 3.12 total, 11% free:
My PCa philosophy is still "Don't take good luck personally".
July 2011, my quarterly AS results @UCSF: PSA 2.4, negative DRE
This marks third quarter in which PSA continued downward. During this quarter, my personal uro diagnosed an infection in the prostate/urinary tract and gave me a two week script for Cipro. Two weeks after completing this, the PSA was at 2.4 - hard to say how much the previous six months' PSA numbers were due to the increasing inflammation as the infection worsened.
Still see no reason to alter AS protocol - stay the course!
Quarterly PSA; check in late 2011 was up, about 3.7. A followup test in January was up again 4.8. My uro gave me a two week supply of antiobiotic. PSA dropped to 3.6. Uro said that my prostate had had so many biopsies (now about 6 or so) that my PSA tests are permanently elevated (inflammation by so many biopsy sticks). His advice is always go home and forget about prostate cancer. [I wouldn't disagree with that advice!] My take-away is to lose about 10 lbs this Spring and return to the diet/lifestyle that I think helps keep things quiet.
PSA has bounced around for the past year, nominally mid-3's. Nasty e-coli urinary tract infection raised it, then after cipro numbers went back down. Probably all the biopsies in past 6 years resulted in chronic prostatitis and maybe some kind of latent infection. March, '13 PSA test went to 7+, retested once at 3.45, retested again at 4.72. Biopsy scheduled at UCSF this week, this one somewhat overdue. Last was done 2 years ago with negative results. Hoping for same this time.
November '12 PSA 3.4; March '13 6.5; April 3.9. Biopsy at UCSF due after 2 years, done in May. Result: tumor found second time in 6 biopsies. Left apex, GS 3+3, 4% of core (of 16 taken). No other information from CDUS. Conclusion: no progression.
Appt with Dr. Bahn in June for CDUS and possible targeted biopsy. His decision was no need for further cores as the tumor was visible on his screen: Left apex transition zone, 13X9 mm, no other lesions, capsule intact, no seminal vesicle invasion, minor 0 to +1 vascularity. Conclusion: no progression.
Plans now: remain on AS, PSA every 3 months. Will return to Dr. Bahn annually to compare with observations from UCSF monitoring. Biopsy will be repeated as need arises, but probably not routinely as in past due to problem with nasty e.coli infections post-procedure. Still and all, AS worth the risk.
Follow-up: Requested UCSF submit the +biopsy core for Oncotype dX testing, and requested MRI to confirm Bahn's CDUS result. Diligence.
Over the past year my PSA; jumped to 6 from its "normal" reading of 3.5 or so. This was cause for concern, but my private uro who is very slow to get excited had me on 3 weeks of antibiotics, waited a couple of weeks then retested: result was a return to less than 4. Requested a followup MRI at UCSF using their 3T equipment, and result was no significant/suspicious areas on the scan. Quarterly PSA; tests every year, the last being done a week ago: PSA; 3.62. I was almost certain it would be elevated because of weight gain, imprudent diet and alcohol consumption associated with a lot of travel. Two theories about these almost annual PSA; bumps: inflammation is due to calcium deposits (as per Dr. Bahn), or bacterial infection. My long term PSA chart looks like a roller coaster, but the nominal value still seems to be in the mid 3. Meanwhile, I'm back in town and losing weight.
PSA in March '15 is 4.1, down from 4.2 in December '14. Meeting with Dr. Shinohara at UCSF for usual checkup showed nothing suspicious on CDUS, and -DRE. Prostate volume about 50 grams or so. Considering seeing Dr. Bahn later this spring/early summer just to see what his CDUS shows. These two guys are an interesting comparison, one being Japanese and the other Korean, both HIGHLY skilled, understated in demeanor, but with very different personalities. Anyway, I feel fortunate to have both looking at things. Also have my own private uro I've known for about 30 years, who is my final go-to guy in any decision I make regards treatment.
At this point to me, it's obvious this disease has two faces: one is quiet and not likely to be your cause de mort; the other is the one you need to treat soon because it can bite you. The problem is if you're on the borderline (3+3, fairly low PSA, 1 or 2 cores positive) nobody can tell you what you have without removing the organ. If you haven't got it going on sexually anymore this isn't such a problem - just "get it out". But for me this would take a lot of life out of life and so the risk, at least at this point, seems worth it. If I were to have a CT scan that lit up the screen like a Xmas tree, I might very well regret not attending to things more aggressively. But I'm not there thankfully.
The other side of all this is that more than a few guys in their 7th decade have some level of PCa and don't know it. After all, Uncle Sugar's docs say don't worry about testing your PSA, so how are you gonna know before your balls swell up and start to bleed? I'm not there, either, thankfully. This AS program has been a pain in the ass, the 7 biopsies I've had have given me chronic prostatitis, but I think for the better I know there's a mild mannered housecat sleeping on my lap. I would rather keep an eye on him in case he wakes up.
January 2016 PSA; was elevated, after test of about 6. Visit to urologist confirmed the usual recurrent prostate infection. A 3 week round of sulfamethoxazole, wait 2 or 3 weeks, retest PSA; 3.5 In March, had a prostate mri/mrsi with and without contrast. Prostate and surroundings unremarkable. I like that word "unremarkable". Have decided no more prostate biopsies (I've had 7 so far in ten years of AS) unless elevated PSA; does not respond to antibiotics, and mri shows something "remarkable" or at least discernible. Still, my last biopsy did show small amount of Gleason 3+3 in left apex, right where it had been the first time. So, I have "prostate cancer" but count myself lucky that after all this time it has so far not progressed. But as three close friends have had very different outcomes, I am very respectful of this disease.
I have PSA tests done every 3 months, and see variations between current low of 3.5 to an occasional bump to 6 or so. Once a year I see Dr. Shinohara at UCSF for a cdus, digital, etc. When my personal uro retired at the end of 2016, I gave him a $150 bottle of champagne. He sent me a thank-you note with the admonition "stay away from urologists". This only because he was an early proponent of active surveillance, and believed the "gold standard" was something to do but only when it was the right thing to do. He had assured me that if he saw things going wrong, he'd be dilligent about checking things out and then if needed we'd discuss the next move. Fortunately that discussion never happened.
Now 73 years old, still doing business, watching friends get older while some not getting any older. Supposed to monitor PSA quarterly but forgot and only just remeasured in July: one year increase from 4 to 4.8. But this hardly matters, as long term chart shows lots of ups and downs between 2 and 7. I am scheduled for annual TRUS exam in a month or so, and MRI later in year. I am lucky, in this regard anyway. Makes me wonder what other cells in my body might be going rogue. But there is no effort to practice proactive screening for cancers of various organs so one can only wait until the first shoe (symptomatic diagnosis) drops. PSA is a useful tool and it amazes me to hear that men are discouraged from having the test. I am an example of "screen-detected incidental prostate cancer" but for all the time and discomfort involved in following up the initial finding (cancer found in 1/125 of biopsy cores) 11 years ago, I understand my version of this common situation for men who survive into their 7th or later decades. Would very much like to know a physician who will do MRI or other tests to determine abnormalities that might be worth further study. So far, my PCP just tells me to lose 5 lbs.
Total PSA roller coaster in last year has trended back down almost to where it was 25 years ago. Gyrations over that time make it hard but i determine doubling time. it was 2 back in 2008 and now it's mostly 3.something. although there have been spikes to 7 or so which always clear up with a week or two of antibiotics and it's back to 4 or less. Maybe it's bicycle seat irritation, urinary infection, calcium deposits in the gland, chronic inflammation from having had about 8 biopsies... The only real difference lately has been big spike in free PSA, accompanied by the same effect in % free. This is now almost 20% which is about double what it was 13 years ago, but nobody seems to know why this happens. low % free is supposed to give some indication of how serious your PCa is, but increasing values...???
The real issue this past year is multiparametric MRI found a hot spot and generated another biopsy. this time there were two "tumors", one being the 3+3 that has been in left apex all along. the other is a 3+4 in another area, which is what set the MRI off (apparently it takes a 4 somewhere to have a finding on mri; maybe true because my previous MRIs never have shown a tumor). the biopsy shows the volume of 3+4 is about .5 mm in a 18 mm core. a couple of uros opinions are that this is just another thing to surveil, in my hopefully endless process of surveillance. Thanks for reading, hope it helps.
Last MRI/biopsy had revealed new 3+3 and 3+4 on same left side of gland, one in base and other mid-. Uro says PSA quarterly and follow-up MRI/biopsy in spring 2021. Further review of slides indicates cell type is fused gland, which is less likely to escape prostate but it's still more aggressive than initial tumor. Might be worth sending to Hopkins for second read. All three are less than 2 mm size, and the 3+4 is .5 mm. Uro says AS still possible, but further tracking will tell whether it's treatment time. Prefer not, of course but I am looking into options none of which at this stage will be surgery. Also have started taking metformin for blood sugar control along with curcumin just because some lit reports the two work together to stabilize PCa. Dosage of each is 2,500 mg per day, taken in portions with each meal or at 4 hour intervals. Body excretes both in fairly short order and I never have trusted slow release meds so it's just something I do with meals, mostly. Result has been stable PSA at about 4, which is unusual because I never get the same reading twice in a row. Worst of all has been not going to gym for past 6 months, as exercise has just been something I do for past 15 years. Lastly, Uro says PSA density (PSAD) is as important a gauge as many other more technology-based diagnostics. with PSA 4, prostate 75 ml, PSAD is .05 which according to literature is less than half to one third the level where this consideration indicates problem, which of course of have. At 75 yo and at least 13 years on ez street, it's maybe time. Focal, seeds or cyber... suggestions appreciated.
Surveillance now consists of PSA every 6 months, annual CDUS exam followed by meeting with primary urologist to discuss whether or not to do MRI. Haven't done a fusion biopsy in three years. MRI in 10/22 showed a 3+3 in left mid, and a small 3+4 in left apex. The pi-rads 3 area previously seen was "not visualized". Frankly I'm less comfortable not following these MRI scans with some kind of agreement to repeat fusion biopsy. MRI is less reliable, but the move away from biopsy seems to be the "gold standard" for surveillance today. I'd rather know more and take chances with possible infection.
Last few years prostate cancer has taken a backseat in life for me. My wife had had multiple myeloma for the past 11 years (of our 17-year marriage). So my main concern was helping the clinical trials keep her alive. Finally November of last year she came to the end after 22 different lines of treatment. I watched her meet her end which event, after seeing this quietly cataclysmic and incredibly profound moment happen three times before, I don't want to see again. So ended my life with my true love.
As for prostate cancer, I had a cdus exam a month ago which found nothing different from previous. PSA is down, although my chart is just a series of ups and downs between 3.5 and 7 so I ignore the results for the most part. So I turned my attention to my own health, and my urologist and ucsf both agreed that my testosterone is too low and supplementation would help with both energy as well as depression. So far, applying the gel everyday has resulted in a lower number than it had been. Go figure.
Still, while I'm comfortable with AS monitoring I'll never go off it. The alternative is terrible if it needs to be invoked and I've lost three friends to the disease so I don't wish it on anyone, least of all myself.
Good luck to all. Bob
Bob's e-mail address is: toodleooo AT earthlink.net (replace "AT" with "@")
