My GP thought my prostate was a little too firm and when the PSA came back at 4.95 recommended a check by a urologist. The urologist thought the change in the prostate was "marginal", but said the slight change and the PSA score recommended a biopsy. When the biopsy came back with a Gleason score of 7 (3+4) the question became choice of treatment. The three urologists I consulted all said watchful waiting wasn't a good option, but if I wanted to wait. . .
After reading everything I could find on the PCRI, PCI and Sloan Kettering websites, and plugging my scores into the Sloan Kettering Katten nomogram, surgery and IMRT (Intensity Modulated Radiation Therapy) seemed to offer the best probabilities of 5- and 10-year non recurrence. I chose surgery because radiation is possible after surgery if there should be a recurrence, but surgery usually isn't an option after radiation. Also, examination of the prostate, seminal vesicle and the lymph nodes after surgery can tell if the cancer already has spread. That is, you know with a good deal of certainty after surgery if the cancer is gone. With radiation you are guessing, at least until the first post-op PSA scores come in.
My surgery was by Da Vinci method by Dr. Rashmi Patel at Mt. Camel West Hospital in Columbus. The pain was virtually non existent and I was in hospital from noon one day until 6pm the next day (including the surgery).
Since the catheter came out I have had the expected incontinence, but I'm down to one pad a day after seven weeks, and seem to be improving daily, though it's some times seems two or three good days are followed by a not-so-good one. I haven't had an erection since, but Dr. Patel put me on to Viagra at my six-week check up and said not to expect much result for several weeks, so I'm very hopeful. My wife and I have learned there can by a sex life without erection.
My first post-op PSA score was a nice fat zero! Perfect! I've resumed my normal activities, and even went snowboarding seven weeks after the surgery to celebrate my 68th birthday. I'm happy with my decision, especially as I know that, except for the possibility of micromets (stray cancer cells), I'm cancer free with, according to the Katten nomogram, only a 1% chance of dying from prostate cancer within 15 years.
At my second post-op check up today, June 7, 2010 (surgery was Jan. 28, 2010), my PSA score remained at less than 0.1, and Dr. Patel was pleased. (The six-month check-up was three weeks early because of travel plans).
Incontinence is no longer a significant issue. I generally have no leakage, even when I cough or sneeze, except when I have to lift something heavy while also twisting (such as dragging my 135lb Laser sailboat out of the water on to a dock, and then on to my dolly). Then I sometimes have a tiny squirt. This is a huge relief. In five months I actually used just over half a package of men's pads. Now, if I know I'm going to be particularly active, as when sailing, I steal one of my wife's panty liners, and that's more than enough. I'm still working hard at the Kegels, with help from a rehab center. I learned that I haven't been doing them correctly, and even after two bio-feedback sessions, I'm still not sure I always get them right. Dr. Patel emphasized working at them.
There is still no progress on the ED front, even with the Viagra -- not even a hint of an erection. Dr. Patel said not to worry since it was just over five months after the surgery, and said nerve repair and regeneration can take up to a year. He recommended I use a pump daily in the meantime to keep the blood flowing in the penis. Anticipating this from info on the web, I bought one last week and I'm awaiting delivery. Nevertheless, Ellen and I have an enjoyable sex life.
Since my first post-op visit I have received the post-op pathology report. It upgraded my staging to T2c, and the tumor was described as "multifocal and bilateral with the largest focus of tumor in the left posterolateral region of the gland and measuring 1.4cm in the greatest dimension." The gland itself weighed 65 grams, was 3.2cm apex to base, 4.3cm from front to back, and 4.9cm in width. As mentioned in my first report, there was no lymph node invasion or seminal vesical invasion.
In short, I'm feeling 100% and reassured, and still confident I made the right decision for me. I still can't get over how pain free the Da Vinci surgery was.
At my third post-op check up today (Sept. 10, 2010), my PSA was undetectable. I was able to tell Dr. Patel that incontinence was a non-issue. I have not had any leakage in more than a month, despite vigorous exercise including cycling, sailing my Laser sailboat (and hauling its 135lbs out out of the water on to its dolly), and crewing for my son in a 3-day regatta which saw us on the water for five hours or more a day.
ED is a different matter. Despite 100mg of Viagra every three days there has been no improvement at all. I do, however, have three of the side effects -- blurring of vision, nasal congestion, and upset stomach. Dr. Patel suggested trying 25mg daily for six days and 100mg on the 7th day, and I'll try that. I bought a penile pump to preserve the penile tissue, and use it daily, and my wife and I have used it for recreational purposes and it is satisfactory for both of us. So if nature doesn't repair the nerves there is an an acceptable substitute. Of course, there are also injections and even implants in necessary, but so far I'm not considering them.
On January 12 Dr. Patel gave me the good news. As the anniversary of my surgery approached (Jan. 28, 2010) my PSA remains undetectable. My next check-up is now in 6 months time.
As before, incontinence is not an issue, and hasn't been since about 12 weeks after the surgery (lots of Kegels before and after the surgery, and still).
ED, however, remains a problem. With stimulation, Viagra has some slight effect -- on a scale of zero (no effect) to 10 (maximum effect), Viagra produces perhaps a 3 (that's up from zero at first). I'm tired of waiting, so I told Dr. Patel I wanted to try Tri-mix, and he gave me a shot right then and there.
Wow! Not a 10, but close to a 6, which I'm told you need for successful intercourse. Since this was the minimum dose, I'm very hopeful that a slightly larger dose will do the trick. Next Tuesday Dr. Patel will up the dose and teach me how to inject myself. The injection itself was a non-issue, though injecting myself might be different (shaky hands?). Overall, I'm satisfied with my decision, and if the Tri-mix results improve just a little, I'll be totally satisfied.
At my 18-month check up in July my PSA was still undetectable, and my bladder function is totally normal. I never worry about it, no matter how active I am being.
ED, however, is still an issue, though even here there is slow improvement. Since I increased the tri-mix dose a little I get a great erection, not a 10, but at least an 8. I suspect a 10 would be too much as I have read others describing their tri-mix erections as painful. Mine are entirely satisfactory, and I find they last about two hours, so one can relax and enjoy some romance beforehand.
I use the trix-mix twice a week, and I use 50mg of Viagra four times a week to help stimulate repair of the critical nerves. It seems to be working as I can now get a reasonable erection with stimulation and the Viagra, not quite enough for penetration, but it is constantly, if slowly, improving. And while I once got no response at all to stimulation without tri-mix or Viagra, I now get a weak erection, perhaps a 3 on a scale of zero to 10.
Perhaps in another year I'll be able to dispense with tri-mix and/or Viagra. The tri-mix injections, by the way, aren't an issue as long as I get them in the correct area of the penis -- easier said than done.
At my two-year check up on Feb. 14, 2012, my PSA was still undetectable. ED was still an issue, but I can now achieve an erection with Viagra that is close to being useful, and I'm hopeful that in a few more months I will be able to dispense with tri-mix. In the meantime I will continue to use tri-mix at least twice a week, though I have been able to reduce the dosage, which I interpret as another sign that function is returning.
At my 30-month check up today (8/14/12) the PSA was again zero. ED is still an issue, though on one occasion recently I was able to achieve an erection firm enough for intercourse 14 hours after taking Viagra. Other times, however, while there was an erection it was not firm enough for success. As a result I rely on tri-mix which works wonderfully, and, in fact, I would say (and my wife would agree) that our sex life is as good as it ever was. It is a bit of a pain (pun intended), but the results are incredible. The dosage necessary continues to decline and is now 0.45cc.
Three year check up last week, Feb. 28, 2013, was all clear. No change in ED, though a partial erection can be achieved with Viagra. Tri-mix is the current preferred solution and it works great. Incontinence is still a non-issue. PSA is undetectable.
It is now more than three and a half years since my robotic surgery and I am generally satisfied with my decision and the outcome, especially every time I get "undetectable" on my PSA scores. Would I prefer not to have ED? Of course yes, and without tri-mix it would be a severe burden. But tri-mix enables a very satisfactory sex life. Viagra provided a mild erection, but not enough for satisfactory intercourse, though I still try it occasionally, hoping things have improved. Otherwise, no complaints, no incontinence, and my urologist has lengthened the time between checkups to eight months from the previous six.
Five year follow up showed PSA still undetectable. ED still an issue and while intercourse is possible sometimes (but not always) with Viagra, which is an improvement, tri-mix is still my first choice because it's so reliable.
There has been no change in my status from my previous report, which I incorrectly said was the five-year check up. It was the fourth year. The most recent check up, in December 2014, was five years from detection and January 21, 2015 was five years from the surgery, so five years clear of cancer! ED still is a problem. I can achieve an erection without Viagra or tri mix, but cannot maintain it. Viagra does not help, nor Cialis, so I use tri-mix with great satisfaction. Other than that, no issues. I continue teaching snowboarding in the winter, cycling daily when the weather allows, and competitive sailing in the summer with my elder son. I also do a lot of traveling with my family, Europe last year and two trips to Australia this year.
At my last check up, September 2015, there was no change in my status. PSA was still undetectable and I continue to use tri-mix happily to deal with ED. I'm totally happy with my decision to have robotic prostatectomy, and I now have only annual check ups with Dr. Rashmi Patel here in Columbus. My next appointment is in September. The one small cloud on the horizon is that I have been diagnosed with smoldering myeloma, which I understand is totally unconnected with the prostate cancer. So far I have no symptoms (it was detected through blood work and bone marrow biopsy), and hence no treatment.
At about 3pm on Tuesday, Sept. 6, 2016, Dr. Rashmi Patel of the Central Ohio Urology Group in Columbus, Oh., said: "It has been just over 6 and a half years since your surgery, and since the PSA remains undetectable you are likely cured." He would like one last check up in 18 months time. The only side effect remains ED, but as I have mentioned in the past, I am happy using tri-mix and will continue to do so.
My next, and probably last check up with Dr. Patel is scheduled for early 2018. I have detected no changes in my condition since my last visit and tri-mix continues to be effective dealing with the ED.
So far my smoldering myeloma continues to just smolder and has not advanced significantly and so has not affected my life style except that I am more tired and run out of steam more quickly so that I won't be teaching snowboarding this ski season.
Almost eight years after my surgery I am completely happy with my decision and with Dr. Patel's work.
Mike's e-mail address is: michaelc628 AT hotmail.com (replace "AT" with "@")