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John Chandler lives in Virginia, USA. He was 65 when he was diagnosed in February, 2001. His initial PSA was 3.80 ng/ml, his Gleason Score was 6, and he was staged T1c. His initial treatment choice was Surgery (Retropubic Prostatectomy) and his current treatment choice is None. Here is his story.

I had surgery (an open RRP) at Johns Hopkins on July 31, 2001 at age 65, done by Dr. Alan Partin. The pathology report was favorable: all surgical margins negative, Gleason score still 3+3, no extracapsular extension, seminal vesicles and lymph nodes negative, both nerve bundles spared. I had a better recovery than 98% of the 200+ men with whom I have corresponded. However, it is my belief that there is a negative long-term effect on erectile function in 100% of cases treated by surgery. If I were diagnosed today, I would probably not choose surgery as a treatment, nor would I choose any form of X-ray radiation.

My PSA has been undetectable. In my opinion, surgery is one viable treatment for early-stage PCa, IF it is done by an "artist" such as Dr. Partin.

UPDATED

April 2005

My PSA continues to be undetectable. I maintain what I regard as the best list of supposedly good RP surgeons in the U.S. and Europe. I also maintain lists of U.S. specialists in imaging, radiological oncology, and medical oncology.

I e-mail these lists to anyone requesting them. (Of course no guarantee is made concerning the performance of any given physician.)

UPDATED

April 2007

Latest PSA was in December 2006:

For me, surgery by an "artist" or "magician", Alan Partin, was a reasonable choice given my lack of knowledge at the time, but I never recommend any one treatment to any man. Study, choose, and don't look back! WW is certainly an option for early-stage PCa, particularly if imaging is used annually.

If a man chooses surgery, I don't think anyone could find a better surgeon or physician than Partin: "Dr. Partin is a doctor's doctor." to quote Dr. Charles "Snuffy" Myers, eminent PCa medical oncologist.

UPDATED

July 2008

I have annual PSA tests, and my PSA is still undetectable. My prostate cancer was caught early enough that I might be cured, although we won't know that until I die with an undetectable PSA ;-).

I'm still working full-time at age 72, and I still enjoy my work.

Good luck and best wishes to you!

UPDATED

October 2009

My PSA is still undetectable after eight years, and probably always will be, but I'll keep doing annual tests.

UPDATED

March 2011

I retired at age 75 and now live in Virginia. When last measured my PSA was still undetectable, < 0.1 mg/nL.

I intend to update my entry some time after the ten-year anniversary of my surgery in July 2001.

UPDATED

November 2011

Great!

On July 31, 2011 I passed the ten-year anniversary of my surgery with my PSA still undetectable. Chances are good that I am now home free, as far as PCa goes.

I still e-mail my lists of supposedly good surgeons, imaging specialists, radiological oncologists, and medical oncologists to anyone who requests them.

Best wishes!

UPDATED

February 2013

[In an update, John provided a few clarifications to his story, which have been incorporated above.]

UPDATED

May 2014

My PSA was measured in April 2014 and is still undetectable.

UPDATED

June 2015

My PSA is still undetectable (<0.1 ng/mL) at age 79, 13.8 years after surgery. I retired in 2011 at age 75. I remain fairly active, playing racquetball.

My choice of treatment, surgery by an expert surgeon (Dr. Alan Partin at Johns Hopkins), was the best choice I could make in 2001 given the state of my knowledge at the time. If I were diagnosed today I might choose Active Surveillance (AS) including quarterly PSA tests and some form of advanced imaging annually, but not repeated biopsies. For cases similar to mine that are pretty clearly early-stage (Gleason 3+3=6, PSA less than 6.0 ng/mL or so, few biopsy cores positive, etc.), I recommend that newly-diagnosed men investigate both AS and, separately, proton-beam radiotherapy (PBR). AS does not cause negative side effects, but of course it does carry some risk of advanced disease and premature death, so it takes a special kind of personality in the patient to do AS. Some PBR patients claim to have experienced few to no negative side effects, although noted PCa medical oncologist Dr. Mark Scholz says he has seen cases of decidedly negative side effects from PBR.

"You pays your money and you takes your choice."

UPDATED

September 2016

When last tested in 2014, my PSA was 0.0 ng/mL.

After giving me the postoperative pathology report in 2001, my surgeon Dr. Alan Partin, the leading authority on recurrence of prostate cancer (PCa), said that although there are no guarantees, he thought the probability of my having an undetectable PSA fifteen years from that time (that is, in August 2016) should be "over 95 percent."

One of my early PSA tests was an ultra-sensitive test, and it also gave 0.0 ng/mL. According to research published by Dr. Stephen B. Strum, this indicates that any future recurrence of PCa is unlikely. I recommend having an ultra-sensitive PSA test for any man who has had a prostatectomy.

I plan to be tested again when I have a new personal physician, and will post those results. My present plans are to die with an undetectable PSA, but not for at least another thirty years. However, "Man proposes; Nature disposes."

At age 80, my health is excellent. I take no medications and I play racquetball regularly, including playing in tournaments at my health club. All of my racquetball matches are against opponents who are younger than I am, and I win most of those matches...

UPDATED

October 2017

After my retropubic radical prostatectomy at Johns Hopkins in 2001, my surgeon Dr. Alan Partin opined that on the basis of my pre-surgical PSA and the Gleason score of my prostate gland by post-surgical dissection, the chance of my having an undetectable PSA fifteen years from that date should be greater than 95%. (Dr. Partin was and is the leading authority on the probability of recurrence of prostate cancer following treatment by surgery.) I later had one ultra-sensitive PSA test done, with the result that my PSA was less than 0.01 ng/mL, undetectable even at that low level.

I had a PSA test done in 2016, fifteen years after my prostatectomy, with the result that my PSA level was less than 0.1 ng/mL, undetectable at that level, validating Dr. Partin's estimate. From what I have read, there is no known case of any man who has had Gleason 3+3=6 prostate cancer by expert post-surgical dissection, has had at least one undetectable PSA from a subsequent ultra-sensitive test, has had an undetectable PSA fifteen years after surgery, and has subsequently developed a detectable PSA or had a recurrence of prostate cancer. Therefore I do not plan to have any further PSA tests.

My health remains excellent at age 81 (82 in another three weeks), I do not need any medications, and although I am now losing racquetball tournament matches to young opponents whom I might have beaten as a young lad of 79 or 80, I am cheerful, optimistic, and enjoying life.

For men newly diagnosed with prostate cancer, my advice today would be

1) Try not to despair or become depressed. Worrying never helped solve any problem. Do your research about forms of treatment, including Active Surveillance, talk to your partner if you have one, talk to multiple specialists, make the best choice you can, and then make the best of the rest of your life as well as you can.

2) Have some form of pre-treatment imaging done beyond ordinary ultrasound by a local urologist.

3) If your Gleason score is 3+3=6 or, possibly, 3+4=7, consider proton beam radiotherapy. Some men report good results with minimal, or even zero, negative side effects. On the other hand, eminent medical oncologist Dr. Mark Scholz reports having seen patients with substantial negative side effects from proton beam treatment.

4) Perhaps most importantly, visit one or preferably more local prostate cancer support groups (see http://www.ustoo.org/Support-Group-Near-You). Ask the men (and wives) there about the post-treatment side effects. In particular, ask how many men have had surgery and now have erectile function (EF) that they consider to be satisfactory, and how many have EF that is as good as it was before surgery. My experience has been that the numbers you can find in books and research articles by surgeons are grossly over-inflated compared to the results obtained by men around the U.S. In particular, some surgeons rate a patient as "potent" if the patient has been able to have intercourse at least once in the past year, either without or with the use of Viagra, Levitra, or Cialis. That is not my idea of what potency means to most men and their partners.

I still send out my lists of specialists in imaging, surgery, radiological oncology, and medical oncology by e-mail to anyone who requests them. These lists are becoming dated, some of the links in them are dead, and I may never get around to updating all of the links. However, most of the specialists listed there can still be found by a web search on their names, together with the search term "prostate".

Don't ask a barber whether you need a haircut. Similarly, don't take the word of any one specialist that his or her form of treatment is the best for your case of prostate cancer.

If you have questions I might be able to answer, send e-mail.

Good luck and best wishes!

UPDATED

November 2018

No change from my last update. At age 83 I feel fine, play racquetball and table tennis vigorously, and need no medications. I had a little sciatica in the past two years, but to my surprise that has mostly disappeared. I still see no reason to measure my PSA again, but could change my mind about that. Best wishes to all the PCa patients out there, and their families!

UPDATED

December 2019

No change since my last update. The last measurement of my PSA gave a reading of <0.006 ng/mL. This is "Undetectable" at the usual threshold of 0.1 ng/mL and also "Undetectable" at the ultra-sensitive threshold of 0.01 ng/mL. At 18 years after my RRP in 2001, there is no longer any need to measure my PSA.

I have long maintained lists of supposedly excellent specialists in prostate imaging, surgery, radiative oncology, and medical oncology (chemotherapy and hormonal therapies) that I emailed to any patients who requested them. These lists have become outdated, and I do not intend to update them or send them out any longer. If anyone has any questions about prostate cancer diagnosis or treatments, I will be glad to try to answer from them from my standpoint as a patient and patient advocate. (I have no medical training.)

I advise anyone diagnosed with prostate cancer to find a local group of patients at https://www.ustoo.org/Support-Group-Near-You , attend a meeting of the group, and talk to the men and their spouses there regarding their current urinary continence and erectile function, and, in the case of hormonal therapies, their physical condition and mental functions in general. The stories told by the men I have met in these groups did not much resemble the rosy pictures painted by the physicians who do the treatments, many of whom act like salespersons as much as they act like physicians...

UPDATED

July 2022

Nothing new to report; my PSA is still undetectable. My lists of top practitioners of various forms of treatment for prostate cancer (PCa) are out of date and will not be updated. I am still willing to give advice on what kinds of treatments to look at; not being a physician, my advice may be of dubious value, but it is only advice on what treatments to consider, never on what treatment to choose.

I am now 86 years of age, still very happily married, and am pursuing research on the analysis and forecasting of time series, a longtime interest of mine. Reference: "Forecasting: Principles and Practice" by Rob Hyndman and George Athanasopoulos (Otexts, 2021) (A continually updated free version of the book is available online, and all software described in the book is always available free online also.)

UPDATED

August 2023

PSA still undetectable.

John's e-mail address is: jpc2917 AT gmail.com (replace "AT" with "@")


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