The history of cancer in my family (father, mother, aunts, uncles) strongly suggested that I monitor myself closely for cancer of all types. I have had annual rectal exams since the early 1970's, I see a dermatologist regularly and I began having my PSA tested annually at age 62 in 1994.
PSA test results showed a slow steady increase from 1.1 to 4.3 over the next 12 years. When the PSA jumped from 4.0 to 5.3 in 2007 I decided to take action. I chose to see a medical oncologist. After consulting with the doctor we decided that I should have a color Doppler ultrasound, and if suggested by the examining doctor, I would have a biopsy. A biopsy was recommended and performed. The results came back with two positive cores out of seven in one lobe with Gleason ratings of 3+3 at the mid and 3+4 at the apex. Because the PSA was relatively low, the staging was T1c and the Gleason's were also considered "manageable" we decided to pursue active surveillance.
The oncologist's plan was to monitor blood chemistry every three months and he suggested that I take Avodart (Dutasteride), vitamin D3, and a supplement which contained selenium, vitamin E and lycopene. I considered the latter questionable but I went with it anyway. Avodart reduced the PSA immediately to 2.0 and eventually it went as low as 1.27, but it also caused a small enlargement of my breasts, sensitivity of my nipples and my libido and erections were affected negatively.
I continued this treatment for three and a half years. During this time I read many books and articles on prostate cancer, visited many web sites, like this one, and attended a prostate cancer forum, preparing for the day when I might have to change tactics. In April 2010 my PSA had risen to 2.2 so I went to two Avodart capsules per day. The PSA went down to 1.56 but this past January 2011 it had gone up to 1.84 and we decided it was time for another biopsy.
The results showed that the cancer was still located in only one lobe of the prostate with the mid area still a GS 3+3 but the area at the apex had gone to 4+3. The cancer in this area was close to the margin. After discussing the results with my oncologist I decided it was time to remove the prostate. Because of my age, now 78, I figured it would be less traumatic for the old body to go with the robot assisted laparoscopic surgery. My criteria for a urologist was one who had experience with open surgery, had also done laparoscopic surgery and had performed at least 1,500 robotic laparoscopic surgeries. I located such a doctor. He also has a record of 98%+ of patients regaining continence and a very good record for his nerve sparing procedure.
My surgery was performed April 1, 2011. I spent one night in the hospital and went home with a catheter. Examination of the removed prostate confirmed the GS 3+3, and GS 4+3, where there was a positive margin. However, the urologist believes that all the cancer was contained within the prostate and thus the operation was a success. The catheter was removed after six days and I have been wearing a pad ever since, almost three months now. Hopefully this will clear up in time but it looks like it will take a while. I am currently going to a hospital rehab facility for biofeedback training of the sphincter strengthening exercises.
My other problem is pelvic muscle pain. The pain was excruciating at first but has slowly diminished. However, I am still sitting with a pillow under each cheek. The original surgeon's suggestion was to take pain medication. Because of the long distance to the hospital where I had the surgery I have changed urologists. The new urologist began performing robotic surgeries two years ago and has noticed this pelvic muscle pain in a significant number of his patients. He has researched the problem and believes that it is associated with the different type of sutures that they use in the robotic procedure versus those used in the open procedure. I do plan to resume my volunteer duties next month, pad and all, but probably won't do much sitting as I don't plan to take my pillows with me.
Immediately after surgery the pelvic floor muscle pain was so severe I could not sit for about three months. The pain has been slowly subsiding for twelve months. Still some soreness. From totally incontinent immediately after surgery to almost normal after six months. Stopped doing Kegel exercises after six months, and did not do them regularly, because of the pelvic muscle pain. After one year almost completely normal except when I stress a lot, e.g., working in the yard and up and down a lot. At one year still totally impotent even with use of Viagra or daily Cialis.
It is now exactly two years since my surgery. I still have occasional stress incontinence, generally a few drops of urine when standing up from a crouching position, and I am impotent. Maybe at 80 years old that is to be expected. However, the road to ED began with the use of the Avodart and reached the 100% mark following surgery. Neither Viagra nor Cialis have any effect, except for their negative side effects. My urologist suggests I try penile injections but I have not gone there yet. Ce la vie.
It was three years since surgery on April 1, 2014. As above, PSA is <0.015. Life is good, but I still have some slight "leakage" when I stress my bladder; standing, lifting, etc., especially after a glass of beer or wine and even after drinking tea. For impotency I have tried penile injections but their effectiveness has been limited. I think the Avodart is what, "done 'er in."
My oncologist/hematologist had to give up his practice and I recently visited a new doctor. As a new patient he had many questions for me. When I discussed my ED and mentioned that my problem began about two months after beginning the use of Avodart his response was, "Yes, that's always been a problem." That was news to me. So that explains the beginning of my ED problem. I was on Avodart for four years before I finally had a nerve sparing robot assisted laparoscopic prostatectomy. In the past year I have become 100% impotent and suffer from urine leakage. The leakage occurs from stress; getting up, reaching, or any movement that squeezes my bladder. When I drink alcohol my sphincter muscles must get relaxed because I will leak then as well. Also when I am aroused leakage occurs. I don't know how much this may be related to my age, now almost 83. So I occasionally wear a pad. Cest la vie. I has been four years now since my operation and my PSA is still <0.05 so I remain optimistic that we may have gotten it all.
April 2016 was 5 years since my surgery and my PSA is still less than .03. As my only problems are old age and getting older, the eventual goal of curing cancer, I conclude that my treatment was a success.
Six years after RARP, at my last doctor visit my PSA was still < 0.03 (undetectable.) I suffer from ENF (erectile non function) and occasional urine dribbling, but, I am now 85 years old. The surgeon that I selected for my operation had performed several hundred radical prostatectomies, several hundred laparoscopic and several hundred RAR prostatectomies. Thus I had confidence that everything would go OK. Following surgery the doctor informed me that I did have positive margins but he believed that the cancer had not escaped the prostate and did not recommend any follow-up. I took his advice. As I talked to others about this they all questioned my decision. So, I am somewhat apprehensive about my future, but as I said, after six years no sign of a recurrence.
Approaching 8 years since my prostatectomy and PSA remains undetectable.
On April 1, 2020 it will be 9 years since my prostate removal and my PSA is still <0.1, so I'm feeling pretty good about that. Nothing else new to report.
I just celebrated my 90th birthday and am still going, but not as strong. My PSA is still <0.1 and my only "symptoms" are typical of old age (e.g., hearing not so good, moving slower, reduced stamina.)
It has been 17 years since diagnosis of my prostate cancer and 13 years since surgery to remove my prostate. I am now 91 years old and impotent (but it's better than the alternative.) I am still enjoying life with my wife of almost 67 years.
Bill's e-mail address is: 76sdrbill AT roadrunner.com (replace "AT" with "@")
