When my regular GP said, "Go find a urologist.", I knew I was pretty much going to be on my own in beating whatever might ail me. It was October of 2003 and I had a raging urinary tract infection and a PSA of 13.8. The doc gave me a scrip for anti-spasm pills to settle urination problems, and sent me into the medical forest to seek my own specialist.
Fortunately, I found a pretty good one, and after a course of antibiotics and a trans-rectal ultrasound, this fellow suggested I might want to undergo a biopsy, though nothing was much out of the ordinary except for a suspiciously darker splotch on one ultrasound print and a prostate gland almost eleven (11) times normal size. PSA, however, had dropped to 8.6, and later to mid-6s, so further adventure did not seem necessary. I had even cancelled one biopsy when PSA had crept back up to mid-8s but then retreated to mid-6s again. I began to get suspicious, however, as PSA bobbled around between 6.4 to 6.8, and lugging around a 200+ gram prostate can be a mite uncomfortable from time to time, even if there's no evidence of tumor.
So, I had the relatively uncomplicated and painless biopsy in August of 2006. The not unexpected news came back of cancerous tissue in the delta quadrant, with pre-cancerous cells residing just above in the alpha quadrant and a Gleason score of 7 (3+4). I was immediately introduced to the surgical specialist and my urologist retired. Before he retired, he gave me the excellent advice to "Read everything you can", and with that, I was on my own again.
I was going to have plenty of time to read, as my surgeon put me on Lupron anti-androgen shots at three-month intervals to halt the cancer and shrink the prostate to a point where it might be treatable. In between reading up on all the available therapies, I also had time to research all the side effects of the Lupron, which no one had told me about, like the fatigue, the anemia, the onset of a pre-diabetic condition, the diminished thyroid function, general achiness, on and on ... [Long time survivor Chuck Maack discusses some interesting aspects of Lupron at this site]But the Lupron did halt the cancer and shrank the prostate to just five times normal size, where it stayed.
Now, 20 months later in April, 2008, it was time to decide on a course of action to rid myself of the cancer. Only my reading had informed me there was no choice but to undergo a robotic-assisted laparoscopic prostatectomy. Fortunately, my relatively non-forthcoming surgeon was one of the first as well as tops in this area (I had read), so at least for the course of the 3-1/2 hour operation, I would be in very good hands. The gland was too large to consider any type of radiating, so cutting it was. This happened in June, 2008, and the procedure went perfectly. Not so the recovery in the hospital, where the minor matter of sufficient painkillers for recovery was overlooked or disregarded or ignored or something. After four days the constant howling in pain had subsided to chronic whimpering and squealing and I was discharged.
Two weeks later, the Foley catheter and JP abdominal drain were removed with very little discomfort. It is now October, 2008, four months after the surgery, and while my surgeon can state that, from his standpoint and with an unmeasurable PSA, I am cancer-free, my lower bowels are still swollen and the side effects of the Lupron have yet to wear off. Reading other accounts on the YANA site, I am hopeful for eventual recovery from the Lupron and the surgery, as my circumstance was rather unique and the measures that had to be taken were rather extensive. I would just have wished that sometime, somebody would've TALKED with me instead of me having to stagger through all of this feeling pretty much alone.
If anyone here would like to talk with me, I'd be more than happy to correspond. Oh, and I pee just fine.
Eighteen months since my successful surgery in June of 2008, with PSA indicator still thankfully almost unmeasurable at 0.03 and prognosis excellent. All I am doing now is lamenting the actions I should have taken prior to surgery. Rather than cry over spilled milk, I am listing those things I think most important regarding this surgery.
1. GET IN SHAPE. One doctor I read of requires his patients to be able to walk briskly for three miles before surgery and to get back up to this distance as soon as they are able after surgery. Being in good condition beforehand will make the recovery much easier and faster, as your system has to squeeze out a lot of CO2 that's been used to ballon the abdomen to get working room for the procedure. After the surgery, it's just good to get the blood flowing again (see 2.).
2. ODDS ON IMPOTENCE. All the stuff I've read doesn't reveal the actual incidence of this condition post-surgery, but near as I can tell, there's about a one in three or one in four chance of impotence post surgery, and I'm one of the ones. [It is very difficult to get specific, accurate numbers for erectile dysfunction, if only because there is a difficulty in definining the problem, but Craig is probably understating the numbers in his estimates]. There are a number of things to be done to improve the odds, none of which I was informed of prior to surgery. Number One, see No. 1 above. Aside from feeling better, you should find your blood pressure lowered if it had been high and be able to get off some blood pressure medications which probably contribute to erectile dysfunction. Number Two, be proactive, that is, quite plainly, get it up good and often prior to surgery (at least once daily and naturally during sleep). [Some suggestions are set out in Use It Or Lose It]. If you have a problem, your urologist should be willing to prescribe Cialis or some such well in advance of surgery. This is another step my doc forgot. This is especially important if you've had to be on Lupron or a similar hormone deprivation therapy.
3. FOLLOW THROUGH ON POST-SURGERY EXERCISES FOR IMPOTENCE. For most men, this regimen includes Cialis or a simlar drug plus use of the somewhat awkward vacuum pump. Though this hardware is cumbersome, it's important to use it as prescribed, perhaps three or more times a day to try to counteract impotence resulting from the surgery. At eighteen months post surgery, in addition to twenty months on Lupron HDT, I am doing ok physically, but still lugging around the extra poundage the Lupron added, plus waiting for my testosterone level to creep back up to a very low but "normal" level. The low hormone level has contributed to a lack of energy and "spirit", of course, but has also I believe brought on fits of depression. The impotence doesn't help either.
So, what can I tell you? Get in shape, damn the consequences and full speed ahead on treatment, because if you don't get treated, the damn disease will surely kill you. [Well, not always...to quote Dr Willet Whitmore: "Growing old is always fatal, prostate cancer is less so." and that's important to bear in mind given that half the men who die from prostate cancer are over the age of eighty.]
Another six-month followup appointment with the surgeon after robotic-assisted radical prostatectomy in June, 2008, with PSA test reading at 0.0, so things are all good on that front.
Five-year clinical depression while going through twenty months of hormone deprivation therapy, the operation itself and the recovery has at last lifted. I guess I am reconciled to being infertile and impotent with zero libido any more, though truth to tell, sex life prior to surgery wasn't all that great any way. My doctors are happy; my psych therapist is happy; I'm not exactly happy but at least I'm not self-destructively sad any more.
Biggest remaining and unfixable problem is that my penis, no longer pushed forward by a tremendously enlarged prostate, has now retreated so far upwards that it is difficult to pull it out to urinate normally. I'm getting used to that too, so I suppose the lesson is that you can get used to just about anything.
Heading into my fourth year past surgery and PSA remains at 0.03. I'm sure it will still be at this level at my next six-month appointment with my surgeon, who will at that time as always express some minor concern that it's still measurable but ascribe this virtually non-existent reading to some glitch at the hospital lab I always use for the test. I'm not letting it bother me either but glad I chose the surgical route as that procedure keeps available my option for "clean-up" radiation, if it's ever needed. I also asked the doctor a question that had been nagging me since the midst of my preparatory treatment with Lupron: whether I might have had the option of HDR, high-dose radiation brachytherapy. Though he said he was not trained in that procedure, the doc answered that in conversation with other specialists, they had indicated that the maximum volume of the prostate for treatment using this therapy was "about 75 grams". As my gland had been holding steady at about one-and-a-half times this size even after twenty months on Lupron, I would not have been a candidate for this procedure. That was pretty much what I had guessed, but I still should have asked at the time.
So things continue on without change, perfect urinary control but permanent impotence. Through a process of self-discovery, however, I did happily find that orgasm is still possible, and that's a hell of a relief.
After standard annual kidney ultrasound and PSA test, my surgeon and I bade farewell to each other in November, 2016 - PSA of Zero (effectively) for 8 years, four months since surgery in June, 2008. My regular GP will have the PSA test done annually as a standard precaution, but two years ago, my surgeon was confident enough to state "You're cured." All the extra weight has stayed with me, though I've not been energetic about addressing that factor. The one factor I do address here is the depression I fell into after the Lupron injections were discontinued - it was desperately bad, including a lengthy period of sometimes incapacitating anxiety, and while all these symptoms had pretty much lifted by January of 2012, it was not until exactly one year later that I fully recovered. Treatment with Lupron may well be advisable, but beware. Anyway, still no problems going on nine years after surgery but for needing a few extra seconds to find my penis when standing at the urinal.
Craig's e-mail address is: firstname.lastname@example.org