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DECISION TIME
DECISION TIME is approaching. (A month ago I accidentally posted here under “newly diagnosed, but I am 21 months past diagnosis.) I’m 62, male, and my doc is now “strongly” urging me to have it all out: bladder + prostate. And she seems to be steering me AWAY FROM a neobladder. So, anybody have anything to say about neobladder vs. ileal conduit vs. Indiana pouch? Naturally, I’m thinking the neo is the most “natural” of the three — but what about daily maintenance and infection rates and all that? Also, one thing I don’t get is that if the other types of diversion mean no more urine flow through the penis, what happens then? Does it close up, get infected, something else bad? I still plan to get another opinion (at Yale) for the possibility (I realize it’s unlikely now) of salvaging my parts thru radiation and/or chemo. The docs seem to favor the BIG OP, but they’re looking at survival rates only; not at quality of life. Anyway, God bless whoever started this forum.
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24 Replies
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Lustron, do you have to stay in Conn due to insurance? The uro specialists that do the most bladder cancer surgery are in NYC and notably Memorial Sloan..i gave you a link earlier.
And if you’re still on Plavix be sure to tell them…it takes 7 days for that stuff to get out of your system.
Pat -
Tell Pat where you are. She has the best, mist up to date info on docs.
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
OK, I’ve certainly learned that one wants a doctor/hospital that does LOTS of RCs; now how do I find out these statistics for doctors/hospitals in my area?
thanx.
yikes!
wow. thanx again, mike.
thanks, pat.
Like you my surgeon was gently steering me to the ileal conduit with the belly stoma and plastic bag. I researched the urinary diversions as you are doing and decided on the bag diversion. I know it seems overly simplistic but I thought the other options were all under the skin and if repairs or adjustments were necessary the doc would need to cut me open to deal with that. Many web sites refer to the IC (bag diversion) to be best for the elderly. I was only 69 but if the IC is easier on elderly I’ll go with that.
Also like you I had to deal with it myself. IE: learn the cleaning and bag application myself, fixing meals, etc. I was a little self-conscience about people seeing my bag but the long T-shirt style popular with guys today solved that problem. I could have fed the cat as soon as I got out of the hospital but don’t have one. I drove myself to the hospital for the many post op appointments. Both my surgeon and my stoma nurse were available online when I had questions or difficulties with the bag. While recovering at home I slept lots.
I would say that the bag option was good for me. There are hundreds of different bags and I have a super one now which I change only every 7 or 8 days. I just go to the toilet as before but I turn a little plastic valve at the bottom of the bag. Regardless which diversion you chose you will have to learn new stuff. They all require learning a new lifestyle.
I’m 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010Mike….that is SO true about the pain meds. Not that i actually remember screaming how much pain i was in and needed more of the opiates …EVIL PAT had emerged and not a nice thing at all..just ask the nurses who really should have known that i was reacting to the stupid stuff but they didn’t. My hubby finally insisted they wean me down off of it and when EVIL PAT left my body i asked how long i had been there…he said 2 l/2 weeks. (OK to be fair this was my second operation which only happened because local uro didn’t know how to take my J-tube out and trapped my ileum under my ureter and i had to have a second surgery) I actually learned to cath myself and was out in 3 days and no pain meds. And i had to send a lot of candy and flowers to those nurses!
Lustron..do not freak out here….these are unusual circumstances and not the norm…in fact, i think it only happened to me and Mike!!
Lustron,
If you can arrange for somebody to stay with you the first couple of days home, that would be a really good idea.
After the surgery, walk, walk, walk, walk, walk.
Guess what? Walking will seem like an impossible idea after surgery and you will not want to. You must! Also, chew gum. You can’t swallow it but chewing gum sends signals to the digestive system and has been shown to help wake the intestines up after surgery.You will have drains and tubes and likely staples up your midsection from your pubic area up past your belly button.
You will have PCA (pain med machine that you push the button when you need more). While it is important to keep on top of the pain, do not try to be completely pain free all the time. The pain meds tend to slow the wakening of the intestines. Trust me! You want those suckers to wake up. The sooner they do, the sooner you start feeling better and the sooner you get out of the hospital. If you can, get someone to come visit you who will get you up and walking when you don’t want to. This should be a good friend because he/she will need to still be your friend after you cuss them out for trying to get you to walk! :) Do not just try to do this yourself if nobody is there. Call for a nurse to walk with you. You will be shaky and you may want to just walk in place next to the bed the first time or two but you should be supervised. Falling over with all these tubes and things would NOT be a good thing.Post surgery, don’t pick up anything heavier than a milkshake. They will tell you when you get discharged from the hospital about restrictions. Take them seriously. I wound up with a couple of follow up surgeries to repair multiple incisional hernias because I lifted too much too soon.
That link that Pat posted has a lot of good detailed information so read that through a few times, print it out and read it again before and after surgery.
When I woke up from the surgery I had three tubes going through my penis. SURPRISE! I expected just a catheter. Two of them were small (like fish tank tubing) and they went through the neobladder into the ureters so the urine could bypass the new neobladder for a bit. When they take those out, grit your teeth and cross your eyes. It doesn’t help but it amuses the doctor. It didn’t really hurt much but it did feel weird when they took those little ones out.
Ask you doctor about an epidural. Do this well in advance of the surgery. It needs to be preplanned with the anesthesiologist. Sometimes they will do those for the surgery and it cuts down on the pain meds they need to give you and the intestines can wake up faster. Why am I so obsessed about intestines waking up??? Well, mine didn’t for quite a while and went through some days of hell and was in the hospital for 12 days. I was going for xrays and scans and had to get fed that TPN stuff through an IV for a long time. That’s why I tend to harp on that stuff. It’s worth asking your surgeon’s opinion on the epidural though.
Oh…one fairly common side effect for men is that drainage can wind up going into your scrotum. For some reason–maybe the doctors and nurses just don’t like saying the word ‘scrotum’, nobody tells you this. Then a day or two after surgery you notice that your scrotum could be mistaken for a regulation NFL football. That’s pretty darn freaky and pain meds can make you imagine all sorts of things are going to happen (like explosions). What you need to do if you notice this is put a pillow down there to prop up the area so the drainage can go back into an area of the body that isn’t so embarrassing to have full of fluid. Oh yeah…don’t be checking it every five minutes…that would just be weird. :) :woohoo:
Wean off pain meds as soon as you can. Ask the nurses what makes sense regarding timeline. You don’t want to be a hero and have major pain, but you don’t want to stay on that stuff too long either. Narcotics like that are tricky and when you start to reduce them, they trick you by making you think you hurt more than you really do. Something with the addiction triggers in the brain. Don’t be fooled. I’m not kidding about this. It makes your body MORE sensitive to pain when you reduce/stop the pain meds.
Also, it is possible you will feel pretty darn good the day after. Well the stuff they used to numb your insides may not have worn off by that time. Don’t be surprised if day 2 is way worse than day one. This is not always the case but it is common. Doesn’t mean you’re going downhill or have complications. It’s the nature of the beast.
Ask questions of the doc. Nurses at top bladder cancer hospitals are usually fantastic. They know this stuff inside out and upside down and they can help you. They can explain the stages you will be going through to heal.
Sometimes, right after surgery, people are in ICU for a bit before going to a regular room. Not always, but sometimes. Don’t worry if you wake up there. Doesn’t mean bad things.
Normal time in the hospital is about 5-7 days if there are no significant complications. Some have gotten out even sooner.
I have to stop now before I get harassed about having to include a table of contents and chapter headings in my response. :)
All the best!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Just saw your new post and as soon as you pass gas and have a bowel movement (lovely subject huh?) out you go. You will be sore as they cut a pretty big muscle when they go in there. But i was not bedridden. I slept a lot in the beginning as i was having to train the new pouch (I have an Indiana) every 2 hrs for a week day and night..then 3 hrs day and night..and then the third week 4hrs day and night…..i did not need any heavy duty pain killers. I just took my time and organized my day. I have a 2 story so i had to deal with steps which i took gently. My husband was great moral support but he didn’t know a right rear burner from a front one. Neighbors and friends brought me food easy to eat…keep it low fibre for a while…soups, pasta’s, soft stuff, bananas, eggs,……you’ll want to take colace for a while until all is healed. And the nurses in the hospital will teach you how to change and clean your tubes. You will have a nurse that comes in a few times a week to make sure you’re doing things correctly and everything looks good. I’m not as up on what tubes you will have going home with the neo but that paper i sent you from U. of Michigan really lays it out for you. And the guys will be a tremendous help to you in answering your questions if you go with the neo.
Whatever you decide on or get we’ve got someone in each category willing to help you sort through it all.
patLustron,
Though each institution is a bit different on how they do things i find that this paper from the U. of Michigan is a great resource on the surgery and the neobladder…it even tells you how to do the kegals.
http://www.med.umich.edu/1libr/urology/postcare/cystectneobladder.htm
pat
well, i’m full of it (questions, i mean). like, when you got out of the hospital, how disabled were you, and for how long? i know hospitals these days roll you out onto the loading dock and send you home at the earliest possible moment. so, when you got home, were you bedridden? or could you sort of get around. i ask in part because i live alone and don’t know how much help i’ll need (will i even be able to feed the cat?) stuff like that. any experience you can relate will help.
Lustron; Sorry, in my original post i ment to say “can’t tell you” not can tell you which surgery to have. Big differents without the ‘t. Hope you didn’t run out late last night and grab the neo:).
As for daily maintenance, I do nothing different now then I ever did. Once again this is just my experience with the neo and even that could change tomorrow. We never know. Knowledge is power. Read all you can on the subject.
Duke
Yes, but I’m one of the few that have complications. For MANY (as in the majority) there is either no or only occasional self catheterization and most (over 90%) achieve night time continence as well. So even though I have the complications, it is still no big deal. If you land in the majority, it is even better.
Mike
PS: Radiation can cause all sorts of complications if surgery is required later. It is a more difficult surgery for the surgeon and you. Chemo before surgery is sometimes done and other times it is after surgery. I required neither and I’m over 2.5 years post surgery and still cancer free and doing great!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Sign In to reply.
