Like all of my colleagues on this site, I remember with crystal clarity the events surrounding my diagnosis of prostate cancer.
Mid-winter 08-09. I felt like something wasn't right for weeks, if not months. I don't know what was really wrong with me at the beginning (and no one has since explained it) - I remember feeling tired a lot, with a "foggy" head and just not like myself. I finally saw my primary care physician, who ran a complete blood test.
February 1, 2009. On the second visit, physician #1 said the blood results were all fine, except for an elevated PSA of 7.6, which he said was either a mistake (because someone my age couldn't have a PSA that high) or perhaps prostatitis. So, he prescribed a short course of Ciproflaxin and ordered a retest. After two weeks on Cipro, I suddenly felt much better, but the repeat PSA came in at 5.5. (I assumed that prostate cancer was unlikely. I was physically active, athletic, average height and weight, with absolutely no history of prostate cancer - much less any cancer - in my family history. I foolishly figured I was sort of immortal.) Physician #1 then referred me to a urologist in the same clinic. The urologist said his DRE (Digital Rectal Examination) revealed nothing remarkable: a soft, normal-sized prostate. He was unsure of the diagnosis, so he ran a 3rd PSA and scheduled a biopsy. The 3rd PSA showed a very low PSA-density, another not good sign.
March 31, 2009. When the urologist came in to my appointment holding a booklet entitled "Prostate Cancer," I knew it wasn't because my test was negative. I don't think I heard much of what he said for the next 5 minutes. I was also confused by the biopsy results at first: 7/12 cores positive; 6 of the cores had less than 5% cancer, but one core was almost 50%. The core with most of the cancer was Gleason 3+4 (Gleason 4 "small focus"), the rest 3+3; no perineural invasion. After the appointment, I read everything I could get my hands on. I was determined to become an expert.
March-April 2009. Urologist #1 referred me to a "surgery guy" and a "radiation guy." It became clear to me that there were no simple or straightforward answers to the ideal treatment. It also became apparent that prostate cancer is a business. The surgery guy definitely laid on a sales pitch for radiation, which in my case would require brachytherapy + external beam radiation, because he believed 7 positive cores was "extensive." The surgery guy (in my main clinic) was very optimistic, but I also found out he was new to the clinic and had done less than 20 surgeries.
This was when I decided to take control and make my own decisions. I got out of my clinic's internal referral system, which I highly recommend. I think I ended up seeing a total of six physicians, and had an appointment for another. Throughout this time, I could barely work, sleep or function. Someone finally recommended that I ask for anxiety medication, which I wish I would have done immediately after the diagnosis. (I had pride then; I have since gotten over my prideful nature!) An independent physician gave me the best advice. He told me I had 40 years to live (I liked hearing that), and that I should get aggressive treatment. He also said that radiation was ok for older men, but he highly recommended surgery for someone "younger." He also told me to make changes in my life. Less stress, better diet, more balance. Finally, he said a patient must absolutely trust his or her physician. I eventually ended up at a major university hospital here in the Northwest with a urology oncology surgeon who was highly recommended by a friend who had called several doctors around the country.
May 28, 2009. I underwent a radical retropubic prostatectomy and a pelvic lymphadenectomy. My treating physician believed in removing surrounding lymph nodes for both diagnostic and a limited therapeutic reasons. 3.5 days in the hospital, catheter, j-bulbs. One minor complication was that the lymphatic fluid drained longer than expected.
April 10, 2009. Two weeks later, my treating physician called me to say that the path report said "organ confined, Gleason 3+4, negative surgical margins, calculated tumor volume 2cm." I dropped to my knees and thanked my God.
What I learned along the way was:
- A prostate cancer diagnosis is not the end of the world: it just feels like it at first.
- Become your own expert. Learn everything you can about your disease. Read a lot of current books by knowledgeable people. [Arthur says above: "It also became apparent that prostate cancer is a business. Are none of these authors in the PCa "business" too?] Stay away from the internet (which, in my opinion, is full of bad information. But then, you wouldn't be here!) [Nice advice - thanks Arthur :-( Hope this information of yours isn't 'bad' - after all it is on the Internet! I wonder why I bother sometimes!]
- Interview lots of doctors until you find one you trust completely.
- Every prostate and every prostate cancer is different. Don't follow your friend's or neighbor's recommendation just because they "know someone who did got this treatment . . ."
- All things being equal, I think the standard open surgery is better for a younger guy whose cancer is localized. But don't take my word for it!
- Once you get diagnosed, change your life. Don't work as hard, avoid excess stress, eat better, get more exercise. I now believe in a low-fat, low glycemic, low calorie diet, with more fiber. And I take 4000 mg of vitamin D every day. But don't take my word for it!!
- Love your wife, your family and your God. I know this is bizarre, but prostate cancer can be a blessing, too, if it changes your priorities.
October 2009. Ran a 10k. Would not advise doing so less than 5 months after surgery.
June 2009-June 2010. My first 4 PSA tests since May 28, 2009 have all been <.03 [It would have been helpful if Arthur shared any information regarding any side effects since this is of considerable interest to men considering surgery.]
PSA tests through 18 months from surgery have all been <.03. I'm due for my 2-year test and appointment.
I also want to correct and revise my earlier post.
First, I incorrectly referred to a PSA density. I've never had a PSA density calculation. I meant to say that in early 2009 I had a fairly low percent-free PSA: <9%. And I suspect it was low on a previous test, but my physician was unconcerned. The only PSA tests I had prior to early 2009 were in June 2005 and January 2006, when my PSA went from 4.3 to 3.2; however, I recall a very low free PSA on that 2006 test, too. When I asked my family practice physician about it, he replied that the %free PSA test is not valid for PSAs under 4.0. (But then he didn't test me for the next 3 years?!) I have since heard urologists say it is true that % free PSA isn't statistically valid for PSAs less than 4.0, but that it should have raised suspicions nonetheless and warranted closer monitoring.
Second, I want to modify my comments about internet information. I think there is both good and bad information on the net. This site is particularly good. I think Yananow has both good, reliable information and is of tremendous assistance to victims. Prostate cancer is a difficult thing for men to talk about, but Yananow breaks down that obstacle. I have had occasion to meet many men who have recently joined our club, and I refer them here.
Thanks Terry, and keep up the great work!
16 years post-surgery. <.03 PSA. 16 years ago, it was all I thought about. These days, I scarcely, if ever, think about it.
Arthur's e-mail address is: syhrnerraf AT yahoo.com (replace "AT" with "@")
