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Bill AtColdMountain and Linda live in Washington, USA. He was 68 when he was diagnosed in March, 2013. His initial PSA was 5.90 ng/ml, his Gleason Score was 6, and he was staged T1c. His initial treatment choice was Surgery (Robotic Laparoscopic Prostatectomy) and his current treatment choice is None. Here is his story.

THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.

History - After ignoring many urinary tract symptoms, my father's cancer was diagnosed in a trans-urethral prostate resection: near total involvement, Gleason 7. Offered his choice of hormone therapy or orchiectomy, he chose the surgery. I watched a very prowd, extremely outgoing man become withdrawn and ashamed. I resolved to carefully attend to my own health.

Over ten years, my PSA consistently rise from 2.0 to 5.9, the doubling time decreasing. My previously unworried physican proclaimed a "small nodule" felt by DRE, and refered me to the local urologist. Disapointed when he talked down to me and did not verify the DRE, I self-referred to a urologist in a regional center 90 miles away. I was much more satisfied with that urologist, who recommended a biopsy - Gleason 6 in 4 of 13 cores, all quadrants and one section 10 mm. He offered robot assisted prostatectomy, within three months.

I consulted with a radiation oncologist and a medical oncologist, all in the larger city, asking their treatment recommendation and opinions of the other doctors. Their opinions were frank and seemed balanced. They suggested Intensity Modulated EBRT and that I was not a candidate for adjuvant medical treatment.

I knew that I have a low tolerance for uncertainty, having to travel far and dedication to a work schedule that makes External Beam Radiation difficult. I chose RALP, ninteen days after diagnosis.

The surgery was on a Monday morning - two nights in hospital - no pain. I returned to my 20 mile commute and desk work the next Monday. In season, my work involves travel on foot in mountain forests. I returned to that work, at 28 days after surgery. The PSA results have been negligible, since.

With one exception, the after effects have been completely within the range that the urologist advised me of. I regained continence two weeks after the catheter was removed. Seventeen months out, my unassisted erections are in name only, not functional at all. For me that is no problem, in spite of having an otherwise successful marriage. I will share the details, if you ask. The exception: Surgeons always advise 'no heavy lifting, one or two months'. Fourteen months out, with only a slight stumble walking, I developed an inguinal and umbilical hernias, along the routes of the laparoscope insertions. Two days later, I learned of a Swedish study finding that men having any prostatectomy or prostate radiation are at as much or more than three times the risk for hernia repair, in the following five years. This needs wide circulation.

Lessons learned: Know yourself, physically and in personality. That is the key to understanding a disease that is different for every man and his partner. Stay in charge of yourself and your treatment. The doctors work for you and must meet your needs. Friends and acquaintances, who have had this disease easier or much worse, have done well with those principles.

Care for yourself and your partner. Be well and good luck.

UPDATED

January 2016

I am very satisfied, having had radical prostatectomy 03/25/2013 Dx 02/26/2013 sta. T1c clinical Gl 3+3 surg 3+4 neg margins, even though another man with the same constellation of side effects might not be.

I am expecting as much as another 25 years of life and without needing any other prostate cancer treatment. I realize that I may have selected more agressive treatment than was strictly necessary. Fearing that I might eperience the long hormone blocade treatment (surgical orchiectomy) that my father endured, radical prostatectomy felt right for me.

The urologist (very skilled and conscientious surgeon) advised me that I was most likely to experience about 50% of the erectial function before surgery. So it has been; although, it is very slowly improving. This would not be at all satisfactory for many men, but my wife and I have adapted smoothly. The only problem was that insurance would not cover drugs for penile rehabilitation. Continuing that treatment might have prevented the penile curvature (Peronie's disease)

Very few men are told of the 2-1/2 times increas in risk of hernias, after radical treatment. The hernias were successfully repaired, but that required two more surgeries under general anesthetic. Had I known of the risk in time, I would have observed a longer recovery under more restriction.

My incontinence is limited to occasional, slight leakage under stress. Sometimes I wear a very light pad. Medication for an unrelated condition may be responsible for the slight urinary problem.

I am happy and marveling at what adventures recent retirement has opened for me.

Advice: Pay very close attention to all of your health. Knowledge is your support through screening and diagnosis. Don't be rushed. You always have time. Above all, know what YOU and your partner really need and want.

Bill's e-mail address is: hanshan114 AT gmail.com (replace "AT" with "@")

NOTE: Bill has not updated his story for more than 15 months, so you may not receive any response from him.


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