I am writing now for the first time to provide a true success story to balance out the true horror stories. It is now 5 years since my robotic surgery. Despite some very trying and even frightening complications in the two weeks post surgery, today I am doing great on every level that had been of such huge concern to me before surgery. I remain cancer free with undetectable PSA levels; I have only the most minimal incontinence issues; and most unexpectedly pleasing I have, after a slow multi-year recovery process, pretty damn good and fully satisfying erections. This is so much better than what I was prepared to accept.
Why I chose surgery over radiation: The research suggested that the decision was a toss up in terms of outcome and side effects. For me, I preferred surgery because all the side effects come on Day 1, and then every day after that you're getting better. With radiation you feel better on Day 1 but the side effects come on later. Also, I had had radiation decades earlier for testicular cancer and so I preferred the knife to more radiation. Though I had successful robotic surgery, I credit the skill and vast experience of my surgeon and his high volume teaching hospital. I've read and believe that highly experienced surgeons get the best results regardless of which technique or tool they use.
In response to my first posting, someone commented that he was glad I was doing so well considering my PSA prior to surgery was 37. I thought I should clarify this as it impacted my choice of surgery over radiation or active surveillance and is attached to a pretty unusual story.
For the two years before my surgery my PSA was all over the place, both rising and lowering significantly within a range from around 6 to 37. The assumption was that I had an infection that was accounting for the erratic PSA levels, but there was no other evidence of infection and the antibiotics didn't stop the roller-coaster PSA results. Meanwhile I had three suspicious biopsies showing pre-cancerous cells before the fourth one finally found a small amount of Gleason 6 cancer.
So my dilemma was this: While I was strongly drawn to the active surveillance option because I really didn't want to deal with impotence if I didn't have to, in my case using PSA levels to monitor cancer progression wasn't likely to be of much use, so I'd be flying blind. That was enough to put me under the knife, and as my previous account suggests, it all worked out wonderfully well - knock on wood!
But an interesting postscript - A few days after surgery my doctor gave me some good news and some bad news. I knew something strange was up because he had all his interns and residents there as he talked to me. (This was Dr Tewari in NYC). The good news was that the pathology report of my removed prostate showed negative margins and all the other good results that strongly suggest that the cancer had been 100% removed. But, the bad and and extremely unusual part of the report was that my prostate tissue tested positive for "acid-fast bacillus" (AFB) and along with some other tests they ran most likely meant that there was tuberculosis (TB) in my prostate. Dr Terwari said that in 25 years of practice he had never seen this. This led to a multi-hour delay as he waited to consult with the head infectious disease guy to see if I could fly home to California without being a public health menace. (I could.) But I was told to follow up with the Public Health people in my home town. In fact, the local Public Health agency contacted me within days of my return. (They had been alerted by New York.) They put me through the normal TB screening of lung x-ray, sputum tests, and skin test. All negative, as it turned out, and no clinical symptoms of TB. So to this day no one can explain what that was all about, though it likely explains the up & down PSA levels. I was insistent that there must be an answer, but my wise and experienced primary care doc said that this would likely always remain a medical mystery. And now, five years down the road, I am as healthy as a cancer and TB-free horse can be, so who cares!
Six years post surgery my PSA remains undetectable and I remain a success story that Dr Tewari in NYC would be pleased but not surprised to hear about. I traveled 3,000 miles from a small town in California to have him do the dirty work based on his very high level of robotic experience and his apparent commitment to improving technique demonstrated by his research papers. I assume that this was overkill as there were other good options closer to home, but in retrospect I think the single best decision I made was not to have the surgery done by my general practice urologist who only does about one prostatectomy per month. Not because he wasn't smart and capable, but because a high volume surgical specialist working with a highly experienced team is more likely to get the multitude of subtle details right. And if things don't work out great, you're less likely to second guess that decision.
Besides being cancer-free, I have no incontinence issues other than the minor annoyance of extra drips right after urinating. In fact, I would say there was a net improvement after surgery as I previously had an enlarged prostate that was starting to interfere with urination. Post surgery I immediately noticed a major improvement, peeing fast and full force like a 20 year old.
Erectile function is surprisingly normal. I am able to have good and sustained erections with and even without PEDs (i.e. Viagra-like drugs). I can confirm that for me the slow process of erectile improvement continued out to 2 years, and maybe longer. A variable other than getting an erection was sustaining it. At one year post surgery I could get a sufficiently hard erection, but sometimes it would inexplicably wilt, even with a PED. But by year two I no longer had this problem. I didn't expect improvement after the first year, so this felt like a bonus.
Another problem that I had in the first year or so was a diminished sense of intensity of my orgasms. I hadn't read about this beforehand, and for me this felt like more of a loss than erectile function. But this too has noticeably improved over the years. Perhaps it had to do with just being less self conscious as the plumbing improved and I got used to no ejaculate. (Back then I likened it to the "dry heaves") Or maybe it had to do with slow nerve healing, I don't know. But I had come to assume that diminished orgasm was going to be part of the price paid for treatment, and I am now very pleased to find it too was only a temporary problem.
Another huge variable in my case has been love. I was divorced and on my own before surgery. Soon after I met a lovely and compatible woman, and now six years down the road we are happily partnered. This is the magic part of the magic sauce that leads to recovery.
More than 7 years post surgery and all is well. I consider prostate cancer to be something that I had but is now long gone, (though I know it is possible to come sneaking back). Still, for me as I live day to day, prostate cancer feels like the past tense. While I consider watchful waiting a very justifiable approach for those with low risk cancers, there is one advantage to treatment that I've never heard mentioned. That is, after successful surgery or radiation and a number of years of undetectable PSA's, one can mentally move on. You stop thinking of yourself as someone with cancer. In contrast, I assume those who are watching and waiting are always thinking of themselves as having cancer. If all goes well, they will die of something else while always thinking of themselves as prostate cancer patients. Maybe I misunderstand how it feels to watch & wait, but that's what I imagine, and in my mind that's a negative to chalk up on the side of watchful waiting. There are of course plenty of negatives to treatment, so the choice remains difficult.
No new news, which of course is good news. My annual PSA continues to be undetectable. It's been 8 years since surgery, so I assume I'm home free, though I know there is still a small chance I might get a recurrence. I have a close friend, age 66, who just got news, 2-1/2 years after surgery, that a detectable level of PSA has been found. He must start down this second, unwelcome prostate cancer road, and I will be there to support him as best I can.
I continue to do well with PSA undetectable.
Barry's e-mail address is: barry2775 AT gmail.com (replace "AT" with "@")