Advice to my brother

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Regular Member

Date Joined Jun 2009
Total Posts : 292
   Posted 8/23/2010 12:31 PM (GMT -6)   
I some of you may recall (unlikely but possible) my younger brother was diagnosed with PCa at 50. That's pretty exact since the biopsy was on this birthday. HBTY
So, I've been his consultant in this. I told him what to look for and expect when he first met with the uro post biopsy. He has decided to go with robotic surgery in three weeks. This is what I sent to help him understand where he's going. He says his eyes are wide opened now. Anything I should add?

"Okay, now that we've passed one hurdle I'll clue you in on a few other things. I can't talk about your actual hospital or surgery since yours will be different but some broad themes and subjects are common and top of mind. Ignore anything that conflicts with what your doctor told you. However, recognize that my perspective may differ a bit from his.
Nerve sparing PCa surgery was developed in 1985 by a doctor using recently dead babies. Adult cadavers were to compressed to find and recognize the nerve bundles. There are two, one on each side. Docs try to save both but may take both depending upon what they find when they get in. Prior to this docs went in from underneath between the legs. That is an easier approach but offers no hope of saving any nerves. This explains why mom can say she never saw dad's scar from his surgery. They tease the nerves free from the surrounding tissue and, needless to say, they are a bit insulted by the whole experience and go on strike.
You have two valves that control urine flow. The outer valve (the only one girls have, incidentally) is relatively unaffected compared to the inner one. You just as well start working on you kegels now to get in shape. That'll help strengthen the muscles you'll be relying on for control and, hopefully, will speed recovery. The inner valve is right at the top of the prostate and can be damaged in surgery. You want an experienced doc to minimize this type of peripheral damage. Broadly speaking, the doc will cut the urethra just outside this valve and, again, at the bottom of the prostate and pull it out.
During this whole time they will be moving a Foley catheter in and out of your bladder. Once your prostate and any suspicious tissue is out they will sew the two ends of the urethra together so you don't leak all over your insides. The catheter is kept in place for 1-2 weeks to allow this important connection to heal. The catheter actually has two tubes in one. You use the large one. A smaller one is used to fill a bulb at the end in your bladder with water so the catheter doesn't come out on its own. I imagine removing one with a full bulb will give you a rough idea of what it's like to deliver a baby. Generally, removing the catheter is fairly straight forward. The hook up a syringe to the tube, pull, out the water to deflate the bulb, and pull out the catheter. Mine, apparently, hung up on a stitch. They use dissolving stitches and a loop or something caught the catheter and it wouldn't budge. Two grown men, the PA and then the Doc, tugging away and me following them around the room. This was right at the two week mark. They left the bulb deflated and suggested I try it on my own over the weekend to see if the stitch had dissolved enough and, if not, call on Monday. I tried Saturday night, felt a pop as the stitch let go, and out the tube came. Interesting sensation does not begin to describe it. I then promptly wet all over the floor since I had zero bladder control.
You will go home with two bags for your catheter. The catheter itself is just the tube. There is a connection that you hook up to one of the two bags. The big bag is for nights. Just hang it on the side of the bed or drop it on the floor and sleep the night through without any night visits to the bathroom. The small bag is a leg bag uses a strap to attach to your leg. You have to empty this one a bit more often. Your wife will love you if you take care of your bags yourself - empty them, change them, whatever. The most common complication with a catheter is infection. I used Neosporin around the entry area to give myself an edge. Don't know if it was necessary or not. I found sweatpants were the easiest thing to wear during this time. They gave easy access and the ones with pockets allowed me to adjust the strap on the leg bag if it started to slip down during my walks without upsetting the neighbors.
No one can predict how long it will take for you to be fully continent. I had no problems at night but if the walk to the bathroom had been any longer in the morning it could have been embarrassing. I wore pads for three weeks after the catheter was removed. I probably could have stopped as much as a week sooner but played it safe. I just wore jockey shorts to keep the pad in place and not mess with the adhesive backing. You have to be a bit careful with placement or you can miss. Some men are continent from the beginning others can take months or never.
Even when you're continent things won't be the same. I'll leak if I stretch or strain without remembering to clamp down. It'll be just a squirt, not enough to soak through to my pants, but enough to stain my underwear. This will not make you popular at laundry time. Since your plumbing is rerouted slightly you may have to learn some new habits. I'm told there is a bit of a dip in the urethra now which may not be empty when I think it is. I just have to take a bit more time to be sure I'm really done. One guy on the forum squirts urine when he climaxes with enough force to hit the bedroom ceiling. I understand that the fact that urine is sterile is not comforting to his partner(s).
I found that I was fine as long as I wasn't moving once the catheter was removed. However, at the beginning, walking seemed like my legs were handles to a pump keeping my bladder dry. I did a lot of walking, gradually building up to two miles. I found that three or four short walks were easier on me than one long one. I also know that, at the beginning, what had been easy activities left me whipped for hours. Eventually, I'd just go for a single stroll for an hour every day and cover about two miles.
You may have been told you that your scrotum will swell a bit after surgery because of drainage. WWII was a little spat between neighbors too. I was advised to elevate it to help. I'll let you mull on that for a while. It had to be one of the more absurd things I was told. Your style of surgery may cut down on the swelling. They will leave a drain tube in your belly at least for the first while after surgery. I was surprised at how deep that sucker was when they pulled it out.
You will be shorter. That inch out of the middle shows up at the end. You'll just have to stand closer to the potty. The catheter may emphasize this because it'll pull back in slightly.
Your doctor already explained the importance of blood flow. I was given a prescription for ED drugs to help. Half a pill daily for months was my prescription. The problem is that these are very expensive drugs, approaching $20 a pill, and insurance companies typically classify them as recreational. You wish. As recreational drugs they generally are not covered. Of course you may be in the minority and have no problems. It happens. However, hundreds of dollars a month for drugs you can't even enjoy may not be your cup of milk. If so, will sell you these same drugs at a fraction of the price. They come out of India so shipping is 2-3 weeks. They are the favored outlet for the men on the PCa forum I frequent. I believe it took me a full year for full recovery. Again, you will be different.
The pump was painful at the beginning, stretching in new ways. However, I am a bit atypical. My family doc did the initial DRE and PSA test in the fall but the uro was on sabbatical until January. Tax season starts in February and surgery when I make most of my money for the year was not a good option. In order to insure that waiting four months was not a problem I got a shot of Lupron Depot in mid to late January. This shuts down testosterone production for about three months and, therefore, slows PCa way down. I was out of action for months before surgery. I dropped the pump once I decided it wasn't needed and never used it for recreation. I believe it was the biggest rip off of the whole experience; $350 for a bit of plastic. The mark-up must be huge. This is why some men on the PCa forum recommend just getting something from an "adult" store. It may not last for 10 years but you don't want it have to."
Diagnosed at 54
PSA 8.7 Biopsy 1/7/09
4 of 6 cores positive, one at 90%
Gleason 3+4=7 Neg bone scan 1/15/09
One shot Lupron Depot 1/27/09 Tax Season
RP 4/29/09
Neg lymph nodes, postive seminal vesicle, 1 positive margin
Gleason 3+4=7 with tertiary 5 T3b
Catheter out at 2 weeks no nighttime incontinence Pad free week 5
PSA 6/6/09 <0.1; 9/10/09 <0.1; 3/11/10 <0.1

Veteran Member

Date Joined Feb 2010
Total Posts : 3987
   Posted 8/23/2010 1:36 PM (GMT -6)   
>>Anything I should add?<<
bullet points... to break up the massive wall of text smilewinkgrin ?
great to see you love your brother!
age: 55
PSA on 10/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
ADT, brachy and IGRT

Forum Moderator

Date Joined Jan 2010
Total Posts : 7082
   Posted 8/23/2010 7:20 PM (GMT -6)   
I just send people the link to Alf's consolidation of our "everything you need to know" list. No better than I can type, anything more would take a week!

Veteran Member

Date Joined Jan 2010
Total Posts : 2845
   Posted 8/23/2010 8:58 PM (GMT -6)   
hello - very detailled work - but very hard to read - could it be edited with distinct paragraphs?

-with gaps in between - easier on the eyes -

-hopefully your brother appreciates all your hard work

Age: 54 -gay with spouse, Steve - live in Peteborough, Ontario, Canada
PSA: 10/06/2009 - 3.86
Biopsy: 10/16/2009- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/2009
Pathology: pT3a- gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
Post Surgery-PSA: April 8, 2010 - 0.05 -I am in the ZERO CLUB - hooorah!
Next PSA: October 8, 2010 -TBA
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