Prostate cancer surgery: What can I expect & prepare for?
48 about to have prostate removal surgery
Just needing some advice or experiences of survivors of this, what to expect and what to prepare for.
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
I am also 56 years old and was diagnosed in the first week of September with an initial PSA of 32. I was never encouraged to get tested, but decided to after a period of time with decreased urine flow. My Gleason's were 9's & 10's, so the Dr. very much expected metastatis (even if he didn't so much as say it out loud). Fortunately, everything was localized. After surgery, it was revealed that roughly 80% of my gland had been transformed to a yellowish tumorous material and that the cancer was tying to migrate. I had robotic prostatectomy on Nov. 9 and I am approaching my 4-week point. Most likely due to the nature of deterioration of the gland and the need to remove all the marginal activity (10 years ago I would've been stage 4). my recovery has been pretty rough. I still can't sit up. I leak when I get off the couch or out of bed. I've also had incredible pain in the unit (just typing it in makes the scro recoil). Dr. has been a wizard and has finally gotten some of the spasms to subside (or at lease decrease in pain intensity (valium and myrbetriq - I refused to take the NORCO - see other comments here about constipation). I take multiple sitz baths every day to alleviate some of the perineal pressure (still jumps to a 8-9 on the pain scale every evening). Needless to say, my experience has been rough. My path report started off with the caveat, "this is a difficult case." I will be meeting up with my wizard (doctor) in the next few weeks to schedule initial radiation. Get used to being wet with a tough case, but follow the rehab recommendations from the Dr. Do the Kegels and be sure to do them correctly. I got frustrated and went whole hog and probably cost my self more pain than gain. After watching a tutorial from an English woman on youtube, I've learned to start slow and work on making progress. Be diligent and be strong and don't hesitate to let it out when it becomes unbearable. If you can do the sttoic approach like my father-in-law did, then more power to you. that was therapeutic. thanks.
Oh my, thanks goodness you decided to have your PSA checked and it is an absolute miracle that your prostate cancer is localized. So glad that you did your radical prostatectomy at Mayo - From my investigations of prostate cancer and RP, the doctor's ability directly correlates with surgery success. Sounds like your margins were positive, requiring the doctor to take additional material surrounding the prostate gland.
Sounds like you are doing great, especially given how advanced your prostate cancer was at the time of surgery. Good luck with your recovery and and hope all goes well with the radiation treatments!!
Ask about getting on Zolodex Its important to stop testosterone the fertilizer of pc
With regards to your Kegels. Ask your Dr. to write a prescription for urinary physical therapy. They will hook up a tester to you to verify you are doing kegels correctly. I was lost also on how to do them before going into PT. Good luck with everything.
I stumbled across this site recently. I had prostate cancer in 2008 and was an active participant on a number of bulletin boards,, looking for my solution. One of the things that struck me then was the lack of posts from >>> afterwards, whatever that turned out to be. It would have been nice to hear from someone well after the fact.
I had originally decided against a prostatectomy because of the difficult nature of the operation and questionable outcome (remember,, this was 2008). After several months of research,, and a month traveling around the country looking at the options, I wound up back in Boise, Idaho.
My wife's doctor suggested I take a look at Dr X, an ex boyfriend with s supposedly "terrible bedside manner". What did I have to lose at that point? I had pretty much decided on brachytherapy but knew from my research that the erectile nerves would be dead in two years.
Anyway,, Dr X did indeed turn out to be a character, brusque and a bit intimidating. St Alphonsus had just acquired the "new" Da Vinci robot,, and Dr X had moved from Portland to Boise to take advantage of the new market. He had done over 200 of the surgeries, and seemed overly confident.
I expressed by biggest fear, loss of sexual ability. He insisted that it wouldn't happen under his watch. It was supposed to be one night in the hospital,, it turned out to be two due the fact I had been a little too thorough with the GoLytely and they couldn't hear any bowel sounds.
I had no pain,, and in fact,, still have some of the Norco I was prescribed. A week after the surgery Dr X removed the catheter and I was continent the following day. It was a disappointment as I had bought this huge package of pads, based on what I had read on the boards!
Dr X had told me earlier that he wanted me to take a low does of Viagra, approximately 25Mg, daily to facilitate blood flow to the area. I managed to get a load of 100 mg tablets of sildenafil citrate from a pharmacy in India for about $1 each (remember again,, this was 2008. Viagra was unaffordable,, and my insurance had already told me,, "No Way,, Jose" are we going to fund this odd off label use.
He also had me get a penis pump, which the insurance did pay for, and he instructed me to pump daily, but avoid any climax. If this sounds strange,, so it did to me. But I followed his instructions.
Dr X had spent 2 hours and 45 minutes on the operation, working on me from a console on the other side of the room. You can view a Da Vinci prostatectomy on YourTube. Your key to your future sexual function is the surgeon's ability to tease the erectile nerves from around the prostate gland without damaging them. It takes time.
Dr X was seeing me weekly, and a month or five weeks after the operation, he said "I want to you go have sex". And so I did,, thanks to a sympathetic wife, the viagra, and the pump.
It was great. I had an uneventful recovery,, lots of sex, and am still sexually active at 78.
Of course,, I don't ejaculate,, but you can't have everything. The orgasm is still strong, and now I buy my "viagra" in Mexico (I live in Tucson) for $1 a tab,, and cut it in half.
I found this board because I want to go on HRT, specifically some form of testosterone. I stumbled across a post on Lupron. I'm right at the border of what my insurance would consider fundable for HRT, maybe 50 points too high. I was considering a month's worth of lupron just to get the number down below 200.
I had a 3 month lupron depot when the cancer was discovered. Few urologists will pass up this profit center if it's indicated. It was meant to buy me time until I discovered what I wanted to do. The Lupron lasted more than 3 months,, and after the prostatectomy I found that while I was sexually functional, I had much reduced libido.
I had a great PCP physician at the time, and in consultation with Dr X they decided that there was no reason I couldn't go on HRT. A month after starting the Androgel,, I had recovered all of my previous interest. I slept better,, was steadier, felt better,, but I discontinued HRT after three months because I just felt that I didn't need it.
So,, anyway,, my idea is to get a lupron shot, a week later get a testosterone test from my PCP, a referral to an endocrinologist , and voilá! I could get the Lupron from India,, or maybe easier,, from Mexico . I'm having my mouth rebuilt by a dentist in Nogales, so I'm down there every two weeks. When he's done,, my teeth will look like the attached photo (my wife), and I'll die with them.
To sum, for me, and I understand that everyone is different, removing my prostate was the best thing that happened to me. I had difficult to live with BHP, my life was focused on the nearest restroom; now I pee like a racehorse.
For you, the lesson is to choose your surgeon carefully. My wife is considerably younger than me, and was an OR nurse in a surgery center until a couple of years ago. Within the confines of HIPPA (naming no names), she would often comment on the highly different abilities of the surgeons she assisted. Some were talented artists,, some struggled.
My PSA remains undetectable (I still test it every year as part of my blood work). My other advice is,, do your due diligence. All the information you need is on the internet, much more available than it was in 2008. With the information you glean,, you will be able to make the decision that is right for you.
Good luck!
I remember how scary it was.
Thank you for your post. I'm 59, and I will have the surgery next month. I've been sexually active since I was a teenager and wasn't looking forward to losing my ability to perform. Your post gives me hope. I also appreciate the fact that you reached back to us newbies. I'll make sure I do the same, good or bad.