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Posted 2/18/2013 9:46 PM (GMT 0)
Jim,

Did you note that the guy is "free climbing" much of the way? He only hooks on when he needs to rest. I have gone up on lower towers (much lower) and I clip and unclip at every step. When I saw the guy unhook and start moving up to the next level I got a bit flushed.
At least he was doing it in warm weather. I did it in the dead of winter with snow and ice. That 4400 calorie number was from my own personal experience.

This was in another life - before I used to worry about prostates and pee control.

Now sit back in that recliner and relax. Watch the Maury show and place bets on whether or not "Jamahal be da baby daddy." It makes the show more interesting.

Jeff

Post Edited (Worried Guy) : 2/18/2013 2:50:43 PM (GMT-7)

Posted 2/19/2013 10:22 AM (GMT 0)
Jeff, it is kind of funny since you mentioned about "another life". As I was headed to the hospital last week thinking of what all they were going to do to me (and being terrified) I remember as a child how scared I was to go to the doctor and get a shot. If that is all I had to be scared about now!

I have to tell you, while I can't find a thing to watch on tv, I haven't gotten down to the Maury level yet. But as time goes on and boredom shifts in, I am sure I will be joining you. 200 channels in glorious HD and not a thing to watch!
Posted 2/19/2013 11:08 AM (GMT 0)
I don't recommend that show when you are normal. It is for when you feel like carp. No matter how bad your life is, you will still be better off than the wastes of carbon, hydrogen, and oxygen who appear there.
"The results are in! Tyshawn! In the case of Shaneequa....You ARE the father!
Jeff
Posted 2/19/2013 1:01 PM (GMT 0)
tdmjam, congrats on your surgery. Now turn off the TV and go for a walk around the neighborhood.Good for the body and mind.
Posted 2/19/2013 2:00 PM (GMT 0)
Welcome to the other side! drink drink drink, lube the tube, walk walk walk. Take it easy and let the wife and daughter wait on you, because believe me, that part won't last long. Hahaha
Posted 2/19/2013 2:52 PM (GMT 0)
Well, it looks like the nightmare continues. Got the dreaded call from Urologist this morning. The news could be worse, but it certainly is not good. Don't have the full report on paper, only what he gave me on the phone. I am still dizzy from the news and not sure what all of it means. Report showed significant cancer on the left side with capsular penetration of 1-2 mm. Gleason changed from 3+4 to 4+3. Margins were negative. He said since the cancer is more aggressive than first shown by the biopsy, it is good we did the surgery now. PSA test in six weeks will determine next cause of action, if any. As long as it is below zero we are good (I know for many of you I am telling you stuff you already know) and if not then we look at the options. Will get the full report Friday when the cath is removed. Going to have a good cry now.
Posted 2/19/2013 3:04 PM (GMT 0)
tdnjam,

This is not that bad as long as the surgical margins are negative even with the capsular penetration. I would ask the URO for a copy of the pathology report for further analysing. When I got mine I was surprised at how much was in the report my URO left out. I am also surprised that he wants to do the first PSA test in 6 weeks, my URO waited 3 months as he said that gives plenty of time to get the PSA out of the blood stream. Even at 3 months my first PSA was 0.07 and is now less than 0.01.  The up grade to 4+3 is also not all that significant and could have been much worse. I have seen guys go in a G6 and come out a G8 or 9.

I would think worse case is you may have to do some SRT in the prostate bed but only if you have a BCR and the PSA starts going up.

Now stop worrying this is not a hightmare and get the healing process done.

Terry

Posted 2/19/2013 3:24 PM (GMT 0)
Your path report strikes me as neither good nor bad. On the one hand, it sucks that you have been nudged from low-intermediate to high-intermediate risk, but on the other hand I like the negative surgical margins. You are playing for higher stakes now but it is pretty much the same game and you have a pretty good hand.

So, have your cry, drink plenty of water, walk when you aren't reclining and recline when you aren't walking, and consider buying a Roku box for your TV. That way, instead of just having 500 cable TV channels of nothing-worth-watching you can get Netflicks and add hundreds of thousands of old movies and TV shows that at some time you wanted to watch but you don't any more.

You have a couple of weeks opportunity to watch TV like a teenager again. Hour after hour after hour. While I was where you are I watched three and a half seasons of the Star Trek series "Enterprise" on Netflicks. The show had a good pilot but struggled the first season. After a couple of years it hit its stride. I think Netflicks has seven seasons of 24.
Posted 2/19/2013 3:38 PM (GMT 0)
My husband had extra-capsular extension but negative margins. His gleason was 3+4. When I heard the news I totally freaked. My husband's surgeon said that his risk of a BCR is 10%. I went on to MSK's website and went to their nomograms. When I plugged in my husband's parameters their nomogram showed a 10% chance of a BCR at 10 years.

I had a long talk with the PA of my husband's surgeon. He said that 40% of the surgeon's patients have some extra-capsular extension. about 10% or less have a recurrance. He said that extra-capsular extension adds a few percentage points of risk for recurrence.

His surgeon does the first PSA at 6 weeks. My husband's first PSA was almost zero. I will always be nervous. However, if the surgeons's statistic and MSK's nomograms are accurate, then my husband is dealing with a few percentage points of additional risk.

Post Edited (bluebird123) : 2/19/2013 1:20:51 PM (GMT-7)

Posted 2/19/2013 4:17 PM (GMT 0)
I was confused by "extra-capsular extension" and "margin" terms/concepts. I found this quote from Dr. Walsh on another post in this forum.

Dr. Walsh on p. 366 of 2nd ed said...

"What are Surgical Margins Anyway?

This is a confusing point for many men. When the prostate is removed, it should be covered by several layers of tissue. It may help to think of the cancerous prostate as a gift in a box . . . and the tissue surrounding it as wrapping paper. After RP, your prostate goes to the pathologist, who immediately coats the outside of the entire specimen--outlining the wrapping paper--with India Ink. . . . . If the cancer is all contained within the box, we call it organ-confined. Even if the cancer penetrates the box (this is capsular penetration), it can still be completely covered with wrapping paper. We call this specimen-confined. In both cases, the men are considered margin-negative. If the cancer has penetrated the box and the wrapping paper as well, this is called a positive surgical margin. the pathologist can see cancer cells at the edge of the India ink, and this suggests that there may be cancer beyond the outermost edge, where the surgeon removed the prostate. In chapter 8, we talked about men who had positive margins with organ-confined disease. How does this happen? Imagine, to continue our box image, that the package has been damaged; there is a tear in the wrapping paper and the box. Some of the bx may even be missing. This is how a man can have a positive margin even if his cancer is still confined inside the prostate.


I still don't understand how it is possible to have positive margins and no capsular penetration.

-Gedman
Posted 2/19/2013 5:26 PM (GMT 0)

gedman said...
I still don't understand how it is possible to have positive margins and no capsular penetration.

That happens when the surgeon cuts or tears into the capsule while removing the prostate. That means that some of the contents of the prostate capsule are visible on the outside of the surgical specimen when the pathologist inks it and examines it. With robotic surgery this often happens around tool marks. When the surgeon grabs the prostate with his tool that looks like a Swiss-Army-Knife pliers he will sometimes tear the capsule, exposing its contents to be inked. The pathologist will note that as a positive margin (sometimes adding the word "focal" to indicate that the exposure is small). But the pathologist will also see that the cancer didn't grow through the capsule and will note that, too.
Posted 2/20/2013 10:27 AM (GMT 0)
Thanks everyone for helping me see a ray of sunshine through the dark clouds. Even if the pathology report had been better I know for the rest of my life I will be sweating out the regular PSA test. I know everyone agrees a positive attitude is important so I am going to do my best to stay upbeat. PeterDisAbelard, I have Netflix. We have watched so much stuff on Netflix it is getting more and more difficult to find some good stuff to watch. We are getting ready to re-watch some old favorites such as Prison Break and 24.
Posted 2/20/2013 3:01 PM (GMT 0)
Tdnjam,

Even with a good pathology report I still sweat out the PSA tests evey six months, my next one is March 19 and already on my mind. I guess it is just part of the PC process.

Terry

Posted 2/20/2013 3:35 PM (GMT 0)
tdnjam - okay, so 3+4 would have been better than 4+3, but still, on paper you are still an excellent candidate for cure/remission.

You'll no doubt find out more once you see your guy when you take the cath out. Write down the questions you want to ask him.

You'll then start the PSA check routine. I won't lie, it's no fun, but it does get better. After a few good results we start to relax little by little. But it never fully goes away. I was freaking out on my las tone by the time I had elapsed the scheduled time for it.

You may never need to do another thing in this battle. But if you do need to return to the battlefield at any point in the future you will still be in the very early stages with options for a cure. Don't forget that.
Posted 2/20/2013 3:45 PM (GMT 0)
td,

My first PSA was at 7 weeks (so I could get it before the doc's office closed for Christmas). Idea was at least to have some news rather than anxiety over the holiday.

He spent a lot of time warning me that it wasn't really far enough out (he likes 8 weeks), but with the schedule what it was ...

In the end it was undetectable (<.1).

So even if you did have a very low but detectable number at 6 weeks, I would not expect panic to be the appropriate response.

I don't have a recliner, so had to make a block in the bed with pillows to keep me from rolling over on the tube. Put the night bag in a mop bucket or trash can in case in pops a leak, and to keep it upright. Minimizes blockage in the tube that way.

I was at work on the computer all day from the first day home. Just as well, since I don't have cable.

Posted 2/20/2013 6:06 PM (GMT 0)
I am actually doing quite well which is one bright spot. As I said in a previous post, I did my best to heed all the advice many of you gave me pre-surgery and I think it better prepared for when I got home. There is one piece of advice I offer everybody, which is something I had to learn too. Let friends and family help you. I was resisting efforts from family members to do things for me (being so independent) and then I thought about it. They really want to do something and feel useful. So when they want to help, I don't protest. For instance, my father-in-law called this morning asking what I need, since my wife returned to work today. I finally gave up and told him it would be nice if he could bring me the morning paper (we don't have home delivery where I live). He stopped by and he ended up visiting for an hour. It was a very little thing he did but I know it made him feel good that he could help out.
Posted 2/20/2013 6:18 PM (GMT 0)
TD:

I know EXACTLY what you are going through. My original biopsy said 4+3. But a second reading of the slides at Ford Hospital said 3+4. I was so happy. Then the pathology said 4+3 WITH perineural invasion and one focally positive margin (very small).

We might sugar coat it here, but the news at the time for me was a kick in the gut. It sounds like your patholgy overall is better. Now welcome to the wonderful world of PSA anxiety.

But, let me repeat, your chances are very good that the surgery was curative!

Mel

Posted 2/21/2013 10:06 AM (GMT 0)
Thanks Mel. I am doing my best to look at this thing in a positive light.
Posted 2/21/2013 8:14 PM (GMT 0)
For some reason, I liked watching the Food Channel while I was waiting for my cath to be removed. I had lots of movies but enjoyed watching food being prepared, and I hate to cook! Go figure.

My first PSA was 8 weeks after surgery. I had positive margins and was scared round 2 was just starting. I have had 2 Zeros so far but the anxiety continues with each PSA test.

The Path report can be overwhelming. I had to disect it and ask more questions at my next post-op doctor's visit.

Welcome to New Normal.

Bill
Posted 2/21/2013 8:39 PM (GMT 0)
Hey Big Mac,

Glad to see you are doing so well.  Zeros good and you had a great PC surgeon in Dr Patel. The pathology report is important as was yours when you were upgrade for no extra cost from a G6 to a G7. How is the continence and ED battle going?

Terry

Posted 2/22/2013 8:45 AM (GMT 0)
Get the cath out today....hooray!! Guess I will have a lot of reading and deciphering to do with the pathology report on the way home. Just hope all the bad stuff was already relayed to me earlier this week.
Posted 2/22/2013 12:31 PM (GMT 0)
Tdnjam

I want to know what you are doing up at 2:45am making the above post, go to sleep you need the rest!!

Hope all goes well with the rubber snake removal today best part you get back a lot of freedom today.

Posted 2/22/2013 1:11 PM (GMT 0)
Don't forget to buy a pack of pull-ups (Depends, etc.) and take one with you when the catheter comes out. Lots of guys are pretty leaky for a while. I tried to use the pads that go in you jockey shorts (Guards) and wound up with wet socks and only fast work with the shoe laces saved my shoes.

Good luck. You will be glad to be rid of the catheter. Buy yourself the celebratory beverage of your choice and keep an extra Depends in your pocket while you drink it.
Posted 2/22/2013 1:55 PM (GMT 0)
Peter is right about the guards and depends. But do not go out to Costco like I did and buy a 90 day supply of both. smhair    I was dry in a little over 2 weeks after the snake was gone and never used more than 2 pads a day in those 2 weeks and was dry at night in about a week. BTW I found wearing the pull up depends to be much more comfortable at night than trying to keep a pad in your underwear while sleeping.

The majority of pads and diapers got thrown away. We have an adult day care facility in my town and I tried to donate the unused pads and diapers to them but they were not interested.

Also you might get some baby diaper bags for the used pads and diapers, they will really stink up your trash with out them. skull

Terry

Posted 2/22/2013 2:07 PM (GMT 0)
I bought a few months supply of depends and pads (shopping for them with my mother was ablast. I let her check out and pay). I ended up needing none of them.

I wouldn't buy a huge supply in case you get lucky and don't need them.
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