Posted 9/17/2008 10:44 AM (GMT -6)
It's been a year since my surgery. I'm doing well. No pain, fully continent (though every now and then, and i do mean VERY rarely, a drop or two escapes if i really have to go badly and don't heed the urge). I want to reiterate that this is so minor that it is no more or less significant than the drops that escape after you urinate. I don't even think about the need for a pad.
I have struggled with the ED and was feeling like the only thing that would ever work was the Tri or Bimix injections. I periodically would try oral meds (Levitra) but it seemed hopeless and ineffective. Then all of a sudden, within the last month, a response. Amazed and excited, I've been gradually seeing improvement. If this trend continues, my hope to be off injections may be realized.
Anyone new here, BE ENCOURAGED. I will summarize my journey and be honest about how I felt. I was DEVASTATED when I was diagnosed and learned about the treatment options. Incontinence and ED, NOT ME I thought! Honestly, I feared the side effects of treatment more than the cancer itself. My family told me I was in denial, crazed and angry and needed to concentrate on being cancer-free and not on the side effects. Easy for them, I thought. It wasn't their concern to be incontinent and face a lifetime of sexual dysfunction at 41!
I couldn't relate to most of the people I read about and talked to. Their life stage and issues were different from mine. All their kids were grown and out of the house and I had twins who were 9 years old. I was worried about how I would ride a bike with my kids while wearing a diaper. How would I iceskate with them? How would I pick them up and toss them in the air? How would I remain the energetic active person that my wife married if I was incontinent and had ED? Or would I become reclusive and depressed? And would any of it really matter if I would be dead by 50? Negative, yes. I was negative.
I felt like I was walking the plank when I went for surgery. My wife said she was afraid I would bolt before they sedated me. I struggled with the decision between surgery and Proton Therapy. The Proton Therapy sounded so EASY. 3 months in Southern California at Loma Linda, working remotely, and I'd bring the family out once a month to visit, and we'd get through it. But ultimately it didn't seem like the best option for me...you can search the archives for my write up on my decision. I literally cried when I called to cancel my appt at Loma Linda. After surgery, I was OUT OF MY MIND over the minor incontinence I had. While I knew others were worse of than me, I was still crazed by the drips and pads in my underwear. I felt like an old man and hated my predicament.
I worked my way through it and saw the improvements that people (doctors, fellow survivors, etc.) said I'd see. I was over the minor incontinence 3 months out from surgery and no more pads. I still was dealing with ED and bummed about that. And now, a year out, I'm seeing the improvements that people said I'd see. And those same folks are telling me the improvements will continue for up to 24 months past surgery.
So believe what you hear rather than doubting all of it. Easier said than done, I know. I doubted everything. Each of us absorbs and processes the information individually.
I just want folks to know, there is a light at the end of the tunnel if you are diagnosed early and are fortunate to not have advanced disease. The fear of positive margins, the fear of being the one who has worse side effects than the next guy, the fear of your PSA rising despite a good pathology report...these fears are real, because these outcomes exist. I've already been on the short end of the stick being diagnosed at 41. So I understand that it's hard to negate these concerns. But we all have to remind ourselves that our odds of survival are good, and our odds of having a good quality of life post treatment are also good.
I have come to resent the Proton BOB newsletters that harp on the negatives of surgery and say nothing of the positives. They NEVER talk about the guys for whom Proton Therapy failed, and yet they exist just as they do for surgery since the statistical outcomes are about the same. But they point to the surgery failures every day. I've come to see it as hypocrisy. Surgery is a viable treatment option and the others have merit as well.
My hope for everyone here is to maintain as positive an outlook as possible. The statistics, regardless of treatment options, are in our favor. This site has great people at it who have continued to be supportive despite adversity. I am forever grateful to have found this forum and for the information I gathered here. It was pivotal to my decision process.
I've observed people here who have gotten themselves wrapped around the axle about people praying for them, or promoting one treatment option or another. As humans, what makes us individuals is our ability to intake information and different view points and then process them to make our own decisions. As for me, I found it all welcoming, supportive and helpful.
So I will keep coming back and sharing my journey and I hope that for some of those who read my posts that it provides hope and encouragement for their own journey.
43 yo. now
5/07 PSA 4.65 at routine physical
6/07 biopsy Gleason 7 (3+4)...diagnosed at 41 y.o.
6/07-9/07 manic research and interviews with physicians across the country in search of the "right" decision. I went to Mass General in Boston, Loma Linda, University of Chicago and Northwestern.
9/17/07 - RRP at Northwestern Memorial by Dr. William Catalona. Thankful the father of the PSA test was right here in Chicago.
Post op path report confirmed Gleason 7 (3+4). negative margins, no seminal vesicale involvement, no lymphatic or vascular invasion, bladder and urethral free and tumor volume was 5% of 27.3g.
9/27/07 - catheter removal...let the games begin...
12/31/07 - threw out the pads (I only had used 1 pad per day for protection against minor drips)
I started Trimix 8 weeks after surgery with success. I hope someday I won't need injections, but I hope more that my PSA stays at 0 forever.
9/17/08 One year past surgery and doing well. PSA less than .1 and ED continues to get better and showing reasonably good results using Levitra which for a long time did nothing.
Post Edited (41diagnosed) : 9/17/2008 10:16:56 PM (GMT-6)