Home after surgery with a few questions

Hello All.

After receiving the results of all of my scans, (Bone, CT, transrectal MRI, octreoscan) it was determined that my cancer (a pure neuroendocrine carcinoid) was confined to the prostate and as I had found a few articles that indicated that neuroendocrine cells are resistant to radiation, surgery was my choice. 

I had laproscopic radical prostatectomy this past Tuesday 6/19 and was home by Thursday night.

The #1 good news is that the surgeon told my wife that a preliminary pathology work-up was clear. I should receive the official and more comprehensive report next week. (Hopefully with the same result).

My initial questions for you veterans are these:

1. I read a great deal about incontinence after surgery, but this is after the catheter is gone. Have any of you experienced the same type of incontinence with your catheter?  I experience leaking, especially in the morning when sitting or walking a lot ( as I was instructed to do). Sitting in my recliner or in bed, there is no issue. I have been home now for three days. Could I be over doing it?

2.   I feel very good and am wondering what limits I should put on myself with respect to walking. My follow-up visit is for next Friday so I still have almost a week to live with this catheter (minimum). I don't want to do anything to make that longer.

3. The worse pain that I have is my throat from the breathing tube. I have been sucking on Cepacol losengers (sp?) and garglling warm salt water. Does anyone have better suggestions? I know that if this is one of my worse problems, I am in good shape but it is still aggravating.

All in all I feel everything went very well. Just waiing for that official report.

Thanks,

Bob

Bob,

I had some blood in my urine initially.  It should diminish as the days past.  I found that I leaked if I tried any pressure (bowel movement) or moved around a lot.  It is very important that you don't do any kegal exercises with the cath in!  You could try some chloriseptic (sp?) which will help numb your throat. 

I walked a little each day and extended the length daily.  I found that I was quite tired in the afternoons and would nap.  Remember, although you may feel like doing a marathon, you still had major surgery.  Give your body a chance to heal!

Aaron

Hi ~ Bob,   Welcome home   ... we are so glad you’ve touched base.   The following is our experience…   Mika’s having some of the same issues!!! Mika's journey      #1 Yes, when Buddy initially strained over a bowel movement he leaked around the catheter.   Even taking stool softeners (prescribed and across the counter) he still had some constipation.   He learned to not sit and strain.   Go sit ~ if nothing happens in a very short period of time… get up and move around.   Go back again… if you have to do this several times… do it… but don’t strain!!   #2 Buddy’s daily routine is far from the norm that you will read about .   We focused completely on healing mentally and physically…   am: eat, walk, read/sleep, afternoon: eat, walk, read/sleep   pm: eat, walk, read/sleep We let Mr. Hang do his thang…..   We stayed home and did not travel away from home during the period of time we had the catheter 17 days.   Our main focus was…. Heal and heal well!   And that’s exactly our outcome.   His walking gradually increased over time.   Started out slowly and worked his way up to 3 hours per day( (3) 1 hour sets) He noticed blood and particles in the tubing and bag… cut back the minutes walking on that day.   Approx 1.5 miles per set Again this is what he built up to over time….   So start out slow.     If you over due it…   you will set your self up to taking 2 steps back for every step forward.   You sound wonderful ~ so keep moving forward and let your self heal properly.   Listen to your body!!!!   If you think you might be overdoing it….. You are!!!!       #3 We didn’t experience the sore throat but were told to expect it… the first thing that comes to my mind is coming cold… like a Popsicle…   also the throat lozenges that deaden the throat.     Take care and know we are keeping you close in thoughts and prayers. In Friendship ~ Lee & Buddy  

Hello All,

Thank You All for the quick replies. Sorry, that I was not real clear about the leaking part (question #1). There has been no blood in my urine (catheter bag) since leaving the hospital. The leaking is occurring at the top of the catheter tube where it is inserted (on the outside of the tube) and this has a pinkish color from what must be a small amount of blood. As all of you pointed out this occurrs while straining (which I have stopped doing) during bowel movements, walking (about half of the time...especially in the moring) and if I sit in a regular chair for any length of time.

I have been doing ten laps around the inside perimeter of my house 3x a day. This takes about 30 - 40 mins  per set. I am going to back off a little and see if things are better.

One additional question: I was given a small device to do breathing excersizes with every hour. I was told this was to prevent pneumonia from just laying around. I find it difficult to remember every hour and wonder how important this is if I am walking a lot? I continue to do these excersizes whenever I remember them but I am probably only doing them every two to three hours.

Thanks Again for all of the support and information,

Bob 

Bob....all your questions are valid ones and my husband had pretty much the same ones.  He is now 12 days post op (Da Vinci robotic) and doing extremely well.  His two most major concerns immediately following surgery were regarding catheter discomfort and a sore throat.  Once the catheter was removed there was a huge improvement (physically and mentally).  The sore throat lasted about a week.  Sore throat lozenges helped a little.  Just give it time and it will subside.  Best of luck to you in your recovery.  

Christy 

Hello concerned spouse, MKat, Izzyblizzy, and All,

It has now been a week since surgery and the sore throat is all but gone, however, the leaking was worse than ever yesterday morning when I started walking laps in the house so I took a day to rest in bed or in my recliner with out a great deal of walking. I think the thirty laps/day inside the house was overdoing it a bit. The doctor that released me said to walk, so I figured the more the better. He could have been more specific. It wasn't my surgeon.

My surgeon had told me prior to the surgery that there would only be about a 5% chance of any incontinence. This sounded great but I am now having my doubts with the way things are going even with the catheter. Am I being pesimistic or realistic?

Do you think it is possible to be completely continent when the catheter comes out this Friday? Sounds too good to be true to me so I'm not counting on it.

Don't get me wrong, I'm glad to be where I am!  Thankful for every day!

Bob

Hi bob,

The leaking from the (Foley)catheter is not that uncommon. It may be comming from around the small inflated bulb that's inside the bladder. The bulb's purpose is to keep the tube in place, and to seal the bladder so there will be no leaks. They come in different diameters, and can be slightly enlarged by pumping fluid into them. You will be rid of the Foley Friday so it's hardly worth fussing with it. In the mean time a Depends Under Garment is the best stop-gap-measure. I just went through this whole procedure with my Dad for the last 10 days; trial & error is the best teacher.

I hope you are one of the lucky ones that need no pads. I unfortunately was a slow learner (about 10 weeks), but I'm dry now, and that's all that counts. Good luck to you on Friday; think positive thoughts; watch Humphrey Bogart in "Sahara"; maybe plan a victory dinner (BBQ is my personal preference). Please keep us posted.

Glen

Hi Bob,

As you know by now, we are all different when it comes to our recovery. Hopefully you won't leak a drop, go home and get a boner. Maybe that will happen and if it does be sure to get us updated. We will all be jealous...

Jim

Thank you all for the replies.

I'm just not going to worry about the incontinence issue, I really thought that only a 5%  chance was very optimistic by my Dr. but he is one of the best surgeons in the country from what I understand.  So, I'll just wait and see.

After reading many other posts, it seems that I am actually doing very well and similar to many others.

Thanks again for the support and I wish the best of health to all of you.

Bob

Hello All,

Well, Friday came and went and I am still with the catheter. They first performed a Cistogram, injecting contrast into the catheter to see how the bladder was healing and to no suprise to me, the bladder was leaking , which I was told meant that it was not yet healed. My surgeon recommended leaving the catheter in for another 11 days (you do what you have to do).

I also received the surgical pathology report which indicated that I did have some adenocarcinoma (<5% of the cells) along with the neuroendocrine carcinoid (5-10%). There was no evidence of adenocarcinoma in the twelve biopsies taken. It also indicated that there was some perineural invasion of the neuroendocrine carcinoid but not of the adenocarcioma. The doctor said that this meant there there was probably about a 30% chance that not all of the neuroendocrine cells were removed (70% chance that they were all removed). This type of cancer is resistant to radiation but is also very indolent, so I will consult with the neuroendocrine tumor specialist again to see what, if anything, he thinks we should do. The good news is that there are many new therapies for attacking this if there happens to be any left.

 Bob

Hello kw,

Thanks for the reply. Sorry to hear that you are in the 5% club! I wish you the best of luck with your physical therapy and hope that another surgery is not necessary. This is my biggest fear if the leaking doesn't get any better. 

When you mention to keep working at it, were you given any instructions while your catheter was in. My biggest complaint is that I was only told to walk and drink a lot of water. I mentioned to my surgeon that the only time that I spend in bed is at night sleeping and his reply was, "Good". In bed there is no leaking. However, I am afraid that sitting too much may be causing some of the problem as I have noticed that there is now more blood in the leaking when I get up from sitting. This is not present in the catheter bag as the urine looks normal. Anyone have any thoughts or maybe was given better instructions for resting and recouperating prior to removal of the catheter?

Thanks,

Bob 

Thanks Cedar,

Thank you for your theory. It sounds like you know much more about the procedure than I do. Any suggestions on a good link to read about the surgical procedure? I will look or one later tonight.

I have an appointment for Monday to have another cistogram to see how the bladder is healing. In the last one performed a week ago, you could see the bladder fill with the contrast and then leak once the bladder was full. (I had a good view of the screen). When I saw the Dr. he said that everything looked as if it were healing well and that the only way to prevent the leaking would be to insert a larger catheter, which he said was not worth it. He simply asked me to put up with it for another two weeks. However, at that time, it was not bleeding, it was just urine. It isn't a large amount of blood, just noticeable to me but worse than it was a week ago.

Thanks again,

Bob