Posted 11/11/2011 2:32 PM (GMT 0)
Hello everyone-
I rarely post, but I do check this site nearly every day. I am so grateful for the support I received around my surgery in July; it was incredibly helpful.
Because I think most of us are curious about the various ways this disease manifests and develops over time, I wanted to provide you with an update on my condition. My signature, below, will give you the basics as a starting point.
1. The good news is that my first post-op PSA, which was done this past week (15 weeks after surgery) was 0.02; I am both relieved and thrilled. I had no idea how much the uncertainty around this was affecting my mood and overall functioning. Waiting for the phone call with the results was about as gut-wrenching as the initial phases of diagnosis. I just have to keep my fingers crossed that future readings are similarly optimistic.
2. My major concern over the summer was with the potential for urinary incontinence. For the first three days after the catheter came out, there was no leakage. Then, I went through a nasty day of urge incontinence - - - I thought I was losing my mind! That resolved, followed by about 5-6 weeks of using pads, with incremental improvement over time. Today, at 15 weeks post-op, I have no need for pads, and have a single "drop" of stress incontinence about once per week. While the stream was very strong in the beginning, it is a little weaker now, without any discomfort. My surgeon did an ultrasound of my bladder this week, found 5 oz. of urine, and asked me to void. I was able to completely empty my bladder upon command. He wants to watch this, however, to see if it is a stricture that is allowing me to go pad-free. We are following up in three months.
3. Regarding ED, I am taking Cialis 5 mg per day. Absolutely no erections to speak of. It's like it's "dead" down there; I am so discouraged. I had no ED issued before surgery, and my doctor said that the nerves were spared. One morning about two weeks ago, I had what felt like a half erection, which came and went in the blink of an eye. I still wonder, was I dreaming? I am meeting with a salesperson from some vacuum-device company next week. I don't know the name of the company, but my surgeon feels this is the best of the four companies he would recommend (best customer service). When I told the surgeon about my frustration, he said - "It's only been three months. It can take a year or more, for some patients." I mentioned Trimix, but he is opposed to that for now; it seems that he feels the cost is not worth it at this stage, and that I would have better success with the pump. Not sure what to think of that, based on what I've read here, and what I've seem on the MSKCC website.
4. Lastly, on a side note, I am reminded of why I undertook surgery in the first place, with a 2.8 PSA, G6, and low-percentage biopsy: My father, who was first diagnosed in 1992 is not doing well. He was first treated with RT, went into remission, had a minor resurgence, started HT, needed some laser work done on his bladder sphincter, has incontinence, developed bone mets, and has been through 3 different chemo treatments. Ineligible for any clinical trials, the doctor has now placed him on an older chemo, Mitoxantrone. He has some increasing pain in his hip and lower back, and the bone mets are running loose. He is now on three different medications for pain. Seeing him in his decline, I am sad for him but grateful that my own prostate cancer was caught so early. I am also grateful for the PSA test and for early detection. The PSA controversy of last month had me incensed. I recently had lunch with a 54-year-old friend whose father had RP surgery for PCa at the age of 56; my friend's doctor is NOT pushing that he have the PSA, and he is confused about whether he needs to have it done, based on the recent press. Needless to say, I urged him to go for one!
Thanks again for all of your help and feedback!