(I hope this isn't too long-winded...) [I don't think it is - many people like to know the detail]
I am 56 years old, in generally good health. A relevant bit of medical history is that, due to spinal cord damage at age 39 ("tethered spinal cord"), I have had no bladder control for 17 years ("neurogenic bladder"); for 17 years I retained all urine, voiding only by intermittent self-catheterization. (To those who have survived catheters: you don't need to wince for me; it was tough for a month but then only a routine chore for 17 years.)
In September 2006, my annual physical PSA was 4.1 ng/ml, and I was referred to my regular urologist. He said that DRE seemed normal; repeated PSA in November was 3.0 ng/ml. Another PSA in January 2007 was still 3.0 ng/ml, but urologist recommended biopsy. Biopsy in February showed cancer in 2 of 10 samples, one a Gleason 3+3=6 and one a 3+4=7.
At this point I started getting in touch with resources such as YANA and support groups such as UsToo. I loaded myself up with terminology and knowledge in preparation for meeting with doctors.
Also, at this point, the emotional impact of what was going on started to kick in. I was lucky that my work load was light starting about then. I did a lot of sitting and staring for a few months.
I was referred to a urologist specializing in prostate cancer and prostate cancer surgery. He said that the Gleason 7 score said that something definitive should be done soon, like in the next few months.
I felt the same way; I felt sick just knowing of that sick part inside me, and didn't want it to spread. He went through a list of treatments that he didn't recommend: the tumor is too aggressive for watchful waiting, hormones weren't likely to be effective enough and would be inappropriately devastating to a 56-year-old, cryotherapy has 95% impotence rate and likely cancer recurrence in 10+ years, radiation possible but it can't be redone and once done surgery later on is almost impossible to get right. He ended with radical prostatectomy as best for me, best chance of getting all the cancer out, and the best chance of living well afterwards. He did it with the DaVinci robotic method; my literature his office had previously sent me, I knew that he had done 800 or 900 DaVinci surgeries and knew what he was doing. He did say that, because of my neurogenic bladder, I was like to have dribbling for the rest of my life. He ordered a CAT scan to see if the cancer had spread.
I wanted a second opinion, and picked an oncologist, who looked at all of the same data as had the surgeon. (I had paper copies of everything the surgeon knew for myself.) At length, he went through the same list of treatments as had the surgeon, and came up with the about same results: he 60% recommended prostatectomy, and 40% recommended radiation.
At this point, we were all in agreement: I wanted that cancer out of me, and wanted to know it was all gone, and radical prostatectomy was the best way to do it.
I'll mention that my wife was with me in all of this, as she has been throughout what followed. She took time to learn and understand what the options and consequences were, perhaps not to the level of detail that I did, but enough to be with me in support.
The CAT scan was done. I saw the surgeon again, and the CAT scan showed no spread. We scheduled the surgery for a month later.
Surgery was Thursday, May 10, 2007; everything went as it should. The surgical report which I got later said that everything was done, nothing unusual was seen, my nerves were spared. I had an indwelling catheter in me, and a blood drain in my left abdomen, and needed serious pain medication for a day.
That night I got up for the first time and walked around the hospital halls a bit. In the morning the surgeon took out the drain and said I seemed to be doing all right, to which I generally agreed. A nurse gave me new catheter bags and explained their use, and I was sent home, 24 hours after walking in.
The first three days at home were rough. I needed serious pain medication for Friday and Saturday, but Sunday and thereafter needed nothing. The pain was all in my lower abdomen, where the urethra had been reconstructed; my abdominal muscles had not been damaged, so I had no trouble standing, sitting, lying, etc. I was on clear liquids until my intestines got going again, which was Sunday. The indwelling catheter was a constant irritation, and dealing with changing and cleaning the bags at night and morning a strain.
I walked around the house for exercise, instead of sitting or lying around, and though I could do it, I was weighed down by the sense of how awful everything was.
But Monday I was myself enough to start returning to work. Because of the catheter I didn't want to go to the office, and since I can do my work from home over the Internet I did so. I actually was able to go out: I wore loose pants with zippers at the knee, and the catheter and bag were hidden but accessible at need. So I worked normally starting four days after surgery. Starting about the same time urine started leaking out my penis around the catheter, so I get Depends for Men and started wearing them; they helped some, but my underpants were always a bit damp from leakage. (I learned later that the pelvic floor muscle weakens 24-36 hours after an indwelling catheter is put in, and then leaks.)
Two weeks after surgery the doctor took out the catheter; it hurt, but only a bit, and for only half a second. I was thereafter entirely incontinent: I couldn't hold anything in. I rather expected this, due to my neurogenic bladder; I had no reason to think my damaged spinal cord would learn that quickly to use the pelvic floor as a sphincter. The doctor referred me to a urinary control physical therapist. I also got the pathology report: The removed prostate was Gleason 3+3=6, 10% of the gland was tumor, the margins were free, stage II (or T2a).
Over the next two months, I saw the physical therapist four times. I learned exercises to strengthen the pelvic floor muscles. I've seen some improvement in my urinary control at night; I can hold it to get out of bed and to the bathroom. Beyond that, the therapist says I have no reason not to be able to learn control, but it takes months, and it's yet to be seen how my neurogenic bladder influences the results. I use about 9-10 Depends per day. But: I no longer need to use a catheter like I used to for 17 years; it just flows out of me, which a year ago I would have thought miraculous. And pads are simpler, cheaper, and less invasive than using a catheter four times a day.
The surgeon and his colleagues do a lot with ED, and not at all surprisingly I had no erection once the catheter was out. We recognized the nerves will need time to heal. The surgeon prescribed and recommended 100mg of Viagra every other day, "without stimulation", as he said, starting when I went home from the hospital, just to get the blood flowing. I did so, and I assume it did good. I also found a mail order supply of Viagra. About a month after surgery we had successful erection and intercourse with the aid of Viagra, and have done it twice since then. Erection is not what it was a year ago, and orgasm is a very different experience, but in our opinion I am in a very good state after only two months after surgery, where more healing is only likely to improve things.
But even after two months, there is more than that which needs to heal. It still hurts to sit down; the reconstructed urethra is troubled by the pressure. A walk around the block results in blood in the urine, which I always see since I wear pads.
I've just had the first post-surgical PSA test: The magic number, 0.00 I am so glad to have that damaged organ out of me. Regardless of everything else, knowing it is out gives me a future.
It's now been 8 months after surgery, and I've just had the regular PSA test: still 0.00. My surgeon was quite ready to talk about and help with continence and sexual issues, but I think I'm doing fine now.
My bladder control became markedly better once my pelvic floor muscle tone reached a certain level. I had all along been just letting everything out, thinking I could do no more. Then one day I said "I can feel my pelvic floor muscle being tight...can I hold it in?" I could: That day I dropped from ten full pads a day to three, and it's been that way ever since. Two or three lightly-used pads a day is nothing.
The pain and bleeding I was having were a thing of the past by six months; I guess it just takes time to heal. About that time I became what I would consider fully back to normal, "running on all cylinders" again, able to work and play as before, which I hadn't been for the first five months. Erection is still not what it was before surgery, but I don't expect that so soon. With 50mg of Viagra, there is almost all the erection I could want, quite enough for any sex play we want. (I use 100mg when I want a great erection, but usually 50mg to reduce the side effects.) Without Viagra, I can have a modest erection; we've done it three or four times that way, just to say we could. But we do use Viagra about twice a week to give the blood vessels their proper exercise.
All in all, things are going quite well.
My PSA is still 0.00, and my 6-months check with the doctor was very brief: I'm doing fine.
My urinary control is just the same, two pads a day, very lightly used, sometimes three with heavy exercise. I could do better, I have the exercises from the therapist ready to do, but I mostly don't bother. My doctor and I agreed: It's not a problem if the way I am now is satisfactory enough that I don't want to do anything about it.
My sexual functioning is, even after almost two years, still improving. This month I realized that 50mg of Viagra is often more than I need, and 33mg is quite sufficient. (That is, at 33mg I get all the erection I could ever want, and at 50mg I get that and more side-effects as well.) And, once in a while, I have enough arousal without Viagra for a little unaided play. However, the 15-20 minute wait for Viagra to take effect allows 15-20 more minutes for foreplay, which is more fun for all concerned.
So things are progressing, and are already perfectly fine for the long run.
Another year, and my PSA is still zero. Urinary control about the same, though some days I wish I exercised my pelvic floor more. For ED I'm down to 25mg of Viagra; 33mg is more than I need, but none isn't enough.
But all is going well.
Another year, and my PSA is still 0.0. Nothing has changed; I could have more urinary control of I exercised more, but things really are as good as I need. Still need for 25mg of Viagra, which works as well as I would like.
It's been five and a half years, and my PSA is still zero. My post-surgical high-sensitivity PSA tests are at an end, as are my follow-up visits to the surgeon. I'm as continent as I need to be, and with 25 mg of Viagra as potent as I want to be.
It's been over five years, so I'm done with annual visits to the surgeon. At my annual physical my regular doctor found the PSA still zero. I'm still as continent as I want to be (still using 2 pads a day), dependent on how much pelvic floor exercise I do. My ED is a little better, little erection without medication, but 25 mg medication gives all that I need.
Still living normally, a little less continence (I think I'm not doing exercises as I used to).
Another year, almost 10 years now, and still at PSA 0. Using slightly higher doses of Viagra for useful effect; I bottomed out at 25 mg, and now need more like 40-50 mg; I've just passed age 65, so I'm not surprised.
I've reached 10 years and my PSA is still 0 and no other signs of recurrence; yay! My incontinence is a little more than before, I suspect I'm not exercising my PC as I should. My need for ED drugs is a little more; I need 35-40 mg of Viagra where for a while I got by with 25 mg; I expect ordinary aging to be taking place, as I'm now 66. But I'm being active successfully in all the areas of my life; indeed, my overall exercise has increased greatly this last year, with no problems.
David's e-mail address is: david_king AT softhome.net (replace "AT" with "@")