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This member is a YANA Mentor This is his Country or State Flag

Charlie B lives in California, USA. He was 63 when he was diagnosed in June, 2012. His initial PSA was 2.40 ng/ml, his Gleason Score was 6, and he was staged T2a. His choice of treatment was Non-Invasive (Active Surveillance). Here is his story.

My urologist felt "right midgland firmness" during my annual DRE in May, 2012. In June I had a 12 point needle biopsy. The results were 11 cores negative, 1 positive (5% of core volume), Gleason 6 (3+3). I have no symptoms but did have a PVP TURP in 2004 and have been on Avodart ever since.

My urologist and PG "estimated" my PSA adjusted for these factors is double what the lab tests show. Uro was encouraging, took the time to explain my options, and suggested a course of active surveillance, which, for the time being, I am following. My uro felt that robotic surgery would be the best treatment option and pushed back against some of the alternatives available outside the US.

YANANOW has been a great resource. I'm just beginning my research and was lucky enough to find the YANANOW website.

I will post again after my next PSA / DRE scheduled again in late September.

UPDATED

October 2012

My first PSA post diagnosis in late June was on Sept 26th. The PSA level was 1.3. I have learned much about PSA and test results to read much into this other than it is definitely better than seeing a 1.1 PSA rise in 3 months. When I chose "AS" I also chose to make drastic changes in lifestyle, including diet (now vegan), exercise (target 10,000 steps per day), supplements (got off synthetic stuff and switched to plant based standardized supplements), reduced stress (stepped back from responsibility on two board of directors and began daily meditation). I did this after much reading about "AS" programs and protocols and determining for me the best approach was not passively waiting for things to get worse. Will post again after my next test near the end of the year.

UPDATED

December 2012

My second post diagnosis PSA result was another reduction, this time to 1.1, which is where I started in April of 2006. I continue on a (mostly) vegan diet, standardized plant sourced supplements, daily activity (walking) and meditation. Maybe Dr. Jon Oppenheimer is correct in his assessment that men with what most call very low risk disease (Gleason 6, 1 of 12 cores, 5%) should not be classified as having PCa. On the other hand, who knows for sure where my PSA would be if I had not made some changes as a result of the diagnosis. My best to all who are dealing with this disease and to their families as well.

UPDATED

August 2013

Well, it has been just over a year since being diagnosed. After a quick doubling of my PSA from 1.3 to 2.7 in April/May of last year, I underwent the usual - 12 point biopsy. Uro swears he felt a "hard spot" during DRE. Since then I have learned much from this site and would not follow the same path if I could have a "redo". Instead, I would have had gotten a round of antibiotics and waited a bit and had another PSA taken. And then gone for a second opinion, especially on the DRE results. Given that my PSA quickly fell to 1.3 shortly after the biopsy and has stayed there ever since (quarterly testing), I suspect I am one of those who have been diagnosed with PCa but actually could be more accurately described as having "PEN" described by Dr. Jonathan Oppenheimer. My concessions to being diagnosed are like many in this low risk group - better eating habits, supplements (plant sourced), exercise, taking time to enjoy life, etc.

I would appreciate your input, particularly if you are on AS like me. My uro wants to do another biopsy in the next 6 weeks "just to be sure". First, I think there is nothing "sure" about this. It seems very hit or miss to me. I think a color Doppler ultrasound with Dr. Bahn will be much more revealing. Second, even though the risk of various side effects of a biopsy (e.g. infection) are low, they exist nonetheless. I know I alone can and will decide on the course of action that I feel best fits my circumstances, but would appreciate your thoughts.

Best to all,
Charlie

UPDATED

September 2013

My first "annual follow up" biopsy was on September 13th. The whole thing was relatively painless as the doctor taking the samples used Lidocaine to numb the prostate. However, I still have a bit of blood in my urine. I'm sure that will cease with a bit more time and rest. My Uro called yesterday afternoon to tell me that there was no evidence of cancer in any of the 12 cores. Of course, I have no illusions. While even my Uro said it is possible for PCa to go into remission, and I believe this is the case, I do not intend to revert to my old life style. Over the past 14 months since my first biopsy my approach was like many on active surveillance - increase in exercise, meditation, nearly complete elimination of dairy products and red meat from my diet, a significant increase in vegetables, and supplements made from plants (not the low quality cheap synthetic man made stuff). My best to all in our "club".

UPDATED

October 2014

Another uneventful several months have passed with no significant change in my PSA and no symptoms. I'm not sure if I fully qualify as using the AS protocol because I do take Avodart and have been for some time to try to keep the BPH symptoms at bay. This seems to have been working well but I think Avodart may be considered a chemical treatment for PCa. Since my diagnosis I have also reduce the amount of red meet I consume, increased my vegetable intake and changed the supplements I take. Assuming that the modest change in PSA over the last several years and the completely negative results from my last biopsy last year, I may be one of the many lucky men who die with PCa and not from it. Best wishes to all.

UPDATED

November 2015

I really do not have much of an update at this time. I was on Avodart and Flomax for BPH issues but the side effects - ED and lethargy - became unacceptable, so I changed to daily use Cialis. So far so good. As for PCa, my initial diagnosis came about 3 years ago, with very small percentage of tissue in 2 out of 12 samples categorized as 3+3. My last biopsy was about 24 months ago (I think). It was a 12 point biopsy and the results were negative. My uro wants me to have an MRI guided biopsy in the near future, probably in early 2016. I would not consider having another biopsy unless it is one that was MRI guided. And, if the MRI does not identify one or more areas of concern, I am probably not going to have another biopsy. So, my next update will likely be sometime in the spring of 2016. Blessings to all my PCa brothers and their families. Charlie

UPDATED

February 2016

I just finished my most recent tests - 3T MP-MRI and guided biopsy. The MRI was negative, but with a 17% non-predictive value, my urologist wanted me to have a 12 point biopsy. I had that done Wednesday afternoon and got the results this evening. There was a very small amount (~5%) of Gleason 3+3 cancer in 1 of 12 samples. This will be sent for Oncotype Dx testing. I am disappointed and a bit surprised. For now I guess I will take consolation in the fact that they only found a very small amount of what appears to be low grade indolent cancer. Best wishes to all.

UPDATED

March 2017

I wish all my friends here on YANA all the best. I have been fortunate. Nothing has changed since my last update. I still take meds to control prostate growth and to help with complete voiding, but my last biopsy was just the same as the prior one. All things considered, I am even more firmly convinced that I should have never been diagnosed with PCa. I'm still at 3+3 according to my uro, but I think that's because he is on the conservative side. I prefer to think I have had a few irregular cells in each biopsy and instead of "going out on a limb" the uro reading the slides says I have PCa. Anyway, barring a PSA change that is consistently elevated or some other significant symptom change, I think I am done with biopsies. Bless you all. Charlie

Charlie's e-mail address is: mannacharlie@gmail.com


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