let\'s do this....

10 years 9 months ago #33252 by DadsRN2010
let\'s do this.... was created by DadsRN2010
my father was recently diagnosed..CA into the muscle of bladder
experiences hematuria and went for a ct scan
ct scan showed "shadow"
the report had "neoplasm" all over it and the BASIC UROLOGIST does a diagnostic cysto in the office to confirm that he had a "polyp" on his bladder and needed a TURBT.

after not liking thelackadaisical attitude this guy had, he finally decides to go with a BLADDER CANCER SPECIALIST (thank God he listened to his RN daughter) and learns that the diagnostic cysto was useless, the CTscan REPORT showed clearly that there was a cancer. not just a "polyp".
(perhaps the basic urologist just wanted to make extra $$ that day)
he goes for the TURBT with the specialist, results are that it yes indeed was cancer and the path report confirm it is muscle invasive. (T2?)
treatment varies..but our new DR who is AGGRESIVE is going to treat my father with WHAT WILL KEEP HIM ALIVE LONGER. he stated he will THROW HIS CANCER IN THE GARBAGE.
i happen to like that approach. he is scheduled for a bladder reconstruction/replacement in 2 weeks.

****this post was "revamped". i had responded to somebody elses thread and by responses to my post it was suggested to start my own thread. thank you all for any support, tips, hints, for my father to adapt to his upcoming neobladder**** :)

all suggestions welcomed as i will help my father adapt to this new lifestyle with an upcoming NEO BLADDER. THANKS!!!!

**Carolyn, RN

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10 years 9 months ago #33253 by mmc
Replied by mmc on topic let\'s do this....
It certainly sounds like the right approach. T2 is not to be messed with or delayed.

64 is still pretty darn young and you said he was otherwise healthy so the neobladder is the most likely route.

It is a very tough surgery and takes a while to recover. Being an RN, I'm sure you know with any abdominal surgery, walking as soon as possible afterward helps the intestines wake up. Chewing gum also helps according to some studies.
He won't want to walk or feel like it but he should get up the very next day and walk a bit (even if it is walking in place next to the bed). Morning, noon, and evening walks up and down the halls.

Tell him good luck from us and tell him we are more than happy to answer any questions he has.

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...

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10 years 9 months ago #33254 by DadsRN2010
Replied by DadsRN2010 on topic let\'s do this....
the surgery is going to be done robotically using the "davinci" robot. hopefully it wont have to convert to an open procedure. it is quite interesting..recovery time is supposed to be less, minimal blood loss, less pain etc..but OR time can run close to 10 hours.
if there is lymph involvment, which at this time they dont think so, my dad will have to get the ileo conduit.

i really want to learn how people manage their new bladders, the little thing that help them..the stuff the surgeon wont know unless he had a neo as well!
i have been picking up things here n there as i look around on this site...my father isnt ready to come here yet so ill hopefully have lotsa good suggestions in the beginning.

hydration is key with managing neo right? do u eventually get that pressure/fullness feeling back when u need to urinate? or nausea?

all suggestions welcomed as i will help my father adapt to this new lifestyle with an upcoming NEO BLADDER. THANKS!!!!

**Carolyn, RN

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10 years 9 months ago #33256 by Patricia
Replied by Patricia on topic let\'s do this....
Carolyn,
Stonybrook has 3 urologists..one in prostate specialization ..one does not mention reconstruction and all have office locations which means that they do not get the volume of bladder cancer patients that the high end cancer centers do. You have Memorial Sloan Kettering right there with 7 people who specialize in bladder cancer and one of them the grand poobah of bladder cancer Dr. Harry Herr and a multidisciplinary team to carry him through every stage not to mention top pathologists in the country.
www.mskcc.org/prg/prg/bios/54.cfm
Also Dr. Bochner is highly regarded
www.mskcc.org/prg/prg/bios/616.cfm
Also Dr. David Chan just took over as chief at Long Island Jewish Hospital..he was one of 3 top docs at Hopkins in the bladder cancer department.
www.northshorelij.com/NSLIJ/David+Chan,+MD+New+Vice+Chairman+of+Urology
If your thinking of the DaVinci your doc better have at least l00 under his belt or he's still practicing.
Bladder cancer is soooo highly specialized i would reconsider if insurance allows to go to a high volume center and one that is at least ranked highly.
Pat
had to copy and paste this from the other category as i saw this secondarily. I know you're going to hate this reply but do look into this. Things are moving quickly and anyone who is extremely experienced with the DaVinci can do it in less than 5 hrs. A second opinion is always a good idea...you know that as a nurse.
pat

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10 years 9 months ago #33260 by mmc
Replied by mmc on topic let\'s do this....
Even with the DaVinci, if this doc isn't doing 2 neobladders a week or so, you want another doc who does.

Doctors are split on the open vs robotic. If it is robotic it needs to be someone with extensive experience with the robot.

The kegel exercises and some other exercises are key to strengthening the pelvic floor muscles whic is key to continence and emptying the neobladder fully.

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...

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10 years 9 months ago - 10 years 9 months ago #33287 by dukel
Replied by dukel on topic let\'s do this....
Carolyn;
Sorry to hear your dad needs surgery, but you have came to the right place for info. If you search the threads on this site, you can find ones to read from pre-neobladder to as far
post neo as you care to follow. First thing is your dad is very fortunate to have a RN like yourself to help him through
this. Myself, i'm 63 and had my neo surgery about eight months ago. Post surgery, not to bad till they removed my
epidural on day three. From that point on i took no pain meds
cause i wanted my digestive track to start working. This took
about eight days. As you know as a RN that is very important.
The next month for me was the toughest part, pain getting up and down, my wife helping change the bandages and flushing tubing, etc. I think from this point on, thing start to get better. By month 3 i was nearly back to normal or the new normal. As Mike said the kegels are very important to getting control of your new bladder. And as you mentioned hydration is a must. I was never good at drinking water but i have adjusted. You asked about pressure/fullness. All i can tell
you is what my experience has been, i'm sure others will
chime in. After just the first few weeks i have felt the
fullness almost as i did before. The one exception to this
is deep into my sleep cycle. That is where the kegels and
not drinking much before bedtime come in!
Wishing you and your father the best.
Duke

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