prostrate containment

ASAdvocate

RobLee said:

ASA - Thank you for your

ASA - Thank you for your sympthetic post and your understanding. Yes, I was an emotional mess last spring. It had been six months since my surgery and I was not regaining continence.  I was put on HT knowing nothing about the side effects. My wife was disgnosed with lymphoma with several tumors up and down her spinal column and I had to be her caregiver. Plus I had to decide on getting the AUS implant in order to be able to undergo the adjuvant radiation which was already past the recommended timeline. Yes, I was a mess, but not because of the surgery. The prostatectomy was one of the more straightforward procedures I've undergone and had an easier recovery than most of my others... well, except for the incontinence. At that, I was merely a statistic, one of the 5% who don't regain full control.

No, I was not upset about the surgery. That surgeon saved my life. I did speak with two RO's and learned that I did not qualify some procedures due to adverse pathology and others required a substantial time committment, something I did not have at the time. The surgery was most expedient in my situatoin and was entirely successful IMO. It would have been nice if my previous urologist might have considered doing so a year or two earlier, when I might have only had a G6 or G7, things probably would have been much cleaner. But at my stage, the surgeron used a broad cut and took out a lot of nerve tissue, but left me with negetive margins and negative nodes. I can't complain about that.

The IMRT was necessary because the EPE had invaded the pelvic floor via the SV. The surgeon did all he could about that. ART was delayed because of the time I had to devote to my wife, the indecision and healing time of the AUS and going thru PT in an attempt to avoid getting the AUS. And no one on that other board where we met could tell me anything about AUS's. I was pretty much on my own. But now that is all in the past. The radiation proctitis is now healing and in just a few more months I'll be able to get a coloscopy to check things out in there. The HT was cut back to 18 months, so a year from now my T will begin to return. I have seen a therapist and have some medications that really helped me get through the crisis. And getting a big fat 0.00 on my latest PSA was a nice pat on the back for all my trials.

I don't think that I actually recommend surgery to anyone, but I do point out that surgery is the only way to have one's prostate thoroughly examined by a pathologist. And I usually point out that even if there is no radiation toxicity, one may forever be hounded by doubt and uncertainty regarding the safety and thoroughness of radiation as a primary therapy... especially for any young man, who must live for 20-30 years "hoping" that the RT got all the cancer and didn't damage anything else.

If I ever run across that post that I quoted, I will bookmark it. I don't remember anyone making such a big fuss about it when it was frst posted. I don't even remember the guy's name. But I thought it was clever and happened to remember it.

Thank you

RobLee, Thank you for your detailed and thoughtful reply. My post was intended to provoke an explanation of your thinking, and you were kind enough to answer that.

I truly hope that you and your wife will be able to enjoy many years of relative comfort and happiness.

As you know, pro-surgery talkng points would be quickly challenged on some boards by pro-radiation advocates. You have even mentioned folks like me opining on surgery and radiation without having experienced either.  Certainly, there is some weight to that argument.  But, IMHO, neither experience nor extensive research makes anyone omniscient, nor able to appreciate all the depths and breadths of this type of cancer.

 So, we try to talk with each other and maybe learn something. Be well.

RobLee

Thank you, you are most gracious

Thank you, you are most gracious. I really do appreciate your kind and thoughtful reply. And I know that you have not had an easy path yourself, having suffered thru several biopsies, some of which had complications and some serious SE's. And the reference to calling you out, though not by name, as presenting options which you have not personally experienced... I apologize for that, and do appreciate the depth of knowldge that you bring forward in each of these forums. I tend to be blunt, lacking tact and be overly verbose, also cynical at times. I sometimes write things that I later regret, but I suspect there are many of us who do so. To risk a cliche, we are all only human.

Admittedly I do tend to be old school in my thinking, and so am reluctant to recommend radiation to young men who - as I had said, may live 20-30 years not knowing exactly what happened inside them. For men 60-70 it's a toss up. I was told if I had been five years older I would not have been a candidate for surgery. And I have known some men who had less than favorable outcomes from radiation. We never know enough going in and we never stop learning. So far, 2018 is looking spectacular for my wife and for myself. Wishing you the best also, and thanks again for your understanding.

Steve1961

Sorry as well

didnt mean to get bent out of shape and have so many people get involved as well.  Just that reading things  and so called sayings that are negative may have some meaning behind them..trying to make this insanely tough decidion is gut wrenching ..I am thankful In such a lost ion that I have iptiles and am being told that any treatment I choose will most likely all produce the same great outcome ...I should have took what I read with a grain of salt but sometimes it’s hard ...sorry once again .

Steve1961

Just a thought

if one chooses surgery and then has to have radiation as well do they regret having surgery when they could have just done done type of radiation just wondering that’s all thanks all this will help me make the right decision

RobLee

No... no regret

I was told soon after surgery that I would need radiation. In fact, I was told before surgery that if the operation didn't get all the cancer that I might need salvage radiation. My prostatectomy went even better than I had expected. From the MRI it appeared that the cancer was contained. The surgeon removed as much tissue as possible and found that there was far more cancer than the MRI had indicated. Because the radiation oncologist later knew exactly where to target, I now have zero PSA.

If I had received radiation based on the MRI they would have missed a lot of cancer. I'm guessing there would have other scans prior to radiation, but I doubt they would have provided as much detail regarding just where the cancer had spread outside the prostate. I do not regret surgery in any way. it halted the cancer and nailed it down. Granted I lost a few other things in the process, but that's just the cost of having advanced high risk cancer.

I would not feel comfortable if I had gone with radiation at first and know there was this half baked organ still inside. What is done is done and though I wish a few things had gone differently, my choice of surgery was appropriate in my circumstances.

Clevelandguy

Good post RobLee

Hi All,

With both surgery or radiation there likely will be conseqences(damage).  Not saying surgery is the right choice or radiation but Rob hit it on the head.

You have to study your case and determine your course of action even if the results might not be optimal.  It seems like people tend to pick a treatment plan and then are very dissapointed if the results don't go textbook perfect.  Sometimes once the surgeon or ocnco guys get inside your body it can either go good for you or maybe not so good, that's the chance we all face.  My MRI said that the cancer was contained inside the prostate but when they removed it they found it was very close to the outside of the gland, if I would have waited several more months it might have been outside the prostate. So far so good, almost 4 yrs. with no detectable PSA.  Life is a crap shoot, hopefully you win the majority of the time.  Continued success RobLee and all other walking wounded as we all need a little luck in our journey.

Dave 3+4

scout10

the foley catheter

Is there pain asociated with the foley catheter in for one week after prostate robotic surgery? I will be asleep when they insert it. Is there pain when they take it out? Thank you

Clevelandguy

No pain just relief

Hi Scout,

 No pain when they pull it out, just a little mild discomfort. Having the cath in for around 10 days after surgery is unpleasant but not anything you can't tolerate, when they pull it out it will be a big relief, trust me.

Dave 3+4

Grinder

Be sure to absolutely

Be sure to be absolutely meticulous about your care of the catheter tubing and bag to avoid infection.. An anchor that keeps the tube from pulling on your business us helpful. Amazon sells Foley catheter peripherals you may want to check out.

Max Former Hodgkins Stage 3

scout10 said:

the foley catheter

Is there pain asociated with the foley catheter in for one week after prostate robotic surgery? I will be asleep when they insert it. Is there pain when they take it out? Thank you

Nope

I had no cath issues at all following my DaVinci Rp in 2015. None.

The cath is inserted as part of the surgery, since the surgeon must test the cath for proper operation before closing. He will fill the bladder with pressurized fluid and then watch it drain to ensure that there is easy flow outward. This ensures that the urethera reconnection is properly sealed.  In many ways urologists are basically plumbers !

I experienced no pain with the cath, and none in the brief removal proceedure.  Having the bag IS an inconvenience, however, especially for me when sleeping.  Request a "walk around" bag to strap to your leg, and a larger overnight bag for sleeping...these are what I had.

Also, because of when the weekend fell, I had my cath in for under a week's time.

max

RobLee

First the easy answer to your question is "no"

First, the easy answer to your question is "no". There is no pain at all. It actually tickles a little when they pull it out.  I was apprehensive at first but then it was over in a second. It feels sort of like when you were a kid and maybe on a rollercoaster or hill hopping in a car and a little urine squirted out. Don't worry about it. You will feel silly just realizing that you were worried about it.

Since you've probably never had one before, the whole thing will look and feel wierd at first... just some sort of "contraption".  You won't be aware of it at first when you wake up, but as reality returns you will get to know how to wrestle the snake.  The tubing will be anchored to your thigh with a stick-on clip called a Stat-lock. It lets your leg move around without tugging on you penis, at least not very much anyway.

There will be occasional pink discharge around the tubing at the tip of your penis. Wipe it with a damp gauze or cotton ball and a little alcohol. Then apply some polysporin/bacitracin ointment at the tip to keep it from drying out and becoming even more uncomfortable, or possibly even infected.  The nursing staff will give you some supplies and go over the necessary maintenance procedures when you are discharged from the hospital.

I did not change bags during the week following surgery. The more often you disconnect the tubing the more chance of introducing bacteria. You can carry the large "overnight" bag around with you the daytime in a shopping bag.  I cut the bottom out of the pocket on a couple pairs of pajama bottoms to pass the tubing thru. At night, put the bag in an empty bucket by your bed (sometimes the bag might leak).  In the morning you just empty the bag into the toilet.

I should mention that I've had a Foley several times in my life. I was confined to a hospital bed once for three months.  Then I had a couple other surgeries after the prostatectomy which required a Foley. Also I was near fully incontinent for a year and used a leg bag during that period... even slept with it.  People who are destined to living with a cath become quite clever in ways to deal with all the plumbing.

Good luck with your surgery. I should let you know that of all the surgeries I've had in my life, the prostatectomy was the most straightforward and uncomplicated procedure from beginning to end. The short time you will be sharing with Mr Foley will quickly become a distant memory.

Jerry Mac

The Foley Catherer

No pain at all.