Posted 8/30/2018 6:34 PM (GMT -7)
I first came here in November of 2017 and just lurked for a month. It was hard to accept my diagnosis. Cancer!!! Me??? Coming here and reading the various stories of different outcomes from different procedures was immeasurably helpful.
I am a Vietnam era vet and have been going to my local VA for years. Of course, early last year, as is our common story here, my PSA test levels kept creeping up and finally warranted a biopsy. Findings were Gleason 5 & 6 lesions and the wisdom said "Not to worry. You'll die "with" this cancer, not from it. We'll watch & wait." 6 months passed and higher PSA's, an MRI, and a focused biopsy added a Gleason 8 the original diagnosis and I had to make a decision. I wish I had used that watch & wait period to do my research. I took my cues from the doctors who initially assured me it was no big whoop. However, as soon as I got the new diagnoses, I sent my images out to a dozen major hospitals nationwide in hopes getting into a Laser Ablation study, but when The Mayo Clinic called me back, they recommended "whole gland removal." I don't know about you guys, but I tend to trust what Mayo says. So, it was back to the VA. That was late April and I'm happy to report after undergoing a radical RALP with nerve sparing, I'm cancer free...technically. My PSA is actually 0.03.
Because my lesions on the right side were fairly close to the margins, the surgeon said he "went wide" on that side. Consequently, I am not completely optimistic about regaining erections any time soon and have come to accept this situation - but Hey! It's early yet. I know they did their best and they saved my life, right?
Having the catheter in was awful. That was 15 days I'd just as soon never go through again. Besides the discomfort and the sleep deprivation, I kept leaking blood every time I had a movement (normal they kept telling me), but seeing blood coming out of my ol' friend really freaked me out. I did kegel exercises pre-op while driving, watching TV, and in the shower. If they helped I can't say for sure, but I stopped wearing a pad in my shorts after just 3 weeks (another thing to be grateful about).
about 4 days after they took the catheter out I decided to "check out the equipment". At first I was horrified. I was never very big, but now... They told me I might lose about a 1/2 inch, but it seemed more like they just took half (Lol), but one thing I noticed is that I had full sensation (zero inflation, but full sensation). I even achieved a pretty decent orgasm. At the time I chalked it up to the fact that I was probably just horny, but I'm here to tell you guys, after averaging twice a week for the past 16 weeks, I am having the most intense orgasms I've ever had - ever. It's a little more work getting there ;) but they are like an electric shock and are more prolonged. Plus, I'm having better fullness each time even though I don't even use my Viagra every time.
I only write this to let you guys know that even though we will all have different outcomes, we should stay positive and enjoy what we have today. Mourning the past and what was is not productive and will only impede your recovery.
I've tried to address some of the issues that I don't see in many of the posts.
And to that end, I have a few more tips for those thinking about dealing with their cancer soon;
1)Do as much research as you can.
You'll never know everything to expect, but when your doctor tells you that you'll be able to return to normal activities after a couple of days (as one of mine told me), you'll be able to call him on that.
2)Look at the different procedures that are out there.
Many good hospitals offer new treatments other than Radiation or a Radical. The Sperling Prostate Center in Florida pioneered a laser treatment (typically $30K) that is now offered coast to coast. There are also (free) studies being conducted using Ultra-sound and Cryotherapy. I'm betting removal and hormone therapy will shortly go the way of bloodletting and snake oil except in extreme cases.
3)Ask lots of questions of your doctors and staff.
Surgeons like surgery. Radiologists like radiation.(And as the saying goes, "if all you have is a hammer, everything looks like a nail".) Also ask how many procedures have they done and if they will be available during recovery and/or follow-up. A help nurse is fine, but actual guy who did the deed is better.
Armed with 1, 2, & 3, follow their advice (albeit cautiously).
and Lastly, buy 3 extra catheter bags. They get pretty disgusting after a couple of days. If you're lucky enough to have someone helping (especially the first couple or 3 days) don't subject them to having to mess with a bag you've been using for more than 3 or 4 days. Plus if they become inverted, like while changing clothes or showering, infections are possible.
If I can answer any other questions, reach out to me. I've checked the "Notify me" box. I reached out to someone here way back and they were instrumental in my decision making process.
Whatever you decide, hang in there and good luck!