Bladder Removal vs Bag

94daley

Hello,

My dad has stage 2 bladder cancer and just finished his chemo.  He is in poor health overall after 30 years of Iron Working and 50 Years of smoking (which he just quit), and is 66 years old.  He was set on the bladder removal surgery because he did not want to have a bag at all, but after struggling through chemo, he is reconsidering since it is more invasive and involves a longer recovery.  He tends to get hit a little harder from health issues because of his poor health.  Any advice/experience out there from folks who struggled with the same decision.  Is having the bag a huge burden, uncomfortable, etc?  So much so that it's worth the bladder removal surgery?  Any insight is welcome.

Thanks so much!

 

papa46

I'm five years older than

I'm five years older than your Dad and was diagnosed with bladder cancer when I was sixty four.  Fought it for seven years with chemo and tumor removals from my bladder to the tune of 20+ surgeries.  Now it's invassive and I will be having an RC(radical cystectomy) on 9/6/17.  To be honost, it's been a rough seven years and I sort of wish that I would have had the RC from the beginning and not waited, but that can not be changed now.  I have decided, at my age, to have a urostomy with a bag as my age is the major factor.  Won't go into details on that one.  I might suggest that you follow this link https://www.inspire.com/groups/bladder-cancer-advocacy-network/?ref=as&asat=605362231 and have your Dad join.  Lots of information on bladder cancer

u4art

papa46 said:

I'm five years older than

I'm five years older than your Dad and was diagnosed with bladder cancer when I was sixty four.  Fought it for seven years with chemo and tumor removals from my bladder to the tune of 20+ surgeries.  Now it's invassive and I will be having an RC(radical cystectomy) on 9/6/17.  To be honost, it's been a rough seven years and I sort of wish that I would have had the RC from the beginning and not waited, but that can not be changed now.  I have decided, at my age, to have a urostomy with a bag as my age is the major factor.  Won't go into details on that one.  I might suggest that you follow this link https://www.inspire.com/groups/bladder-cancer-advocacy-network/?ref=as&asat=605362231 and have your Dad join.  Lots of information on bladder cancer

Papa 46 .... you`ve hit the

Papa 46 .... you`ve hit the nail on the head ..... what is one`s quality of life when ...  1. you have repeated treatments, year after year  2. you live in daily fear of the bladder cancer becoming malignant and spreading.  Having the blader removed asap seem a radical step .  It is .... but the benefits are obvious to those that have waited. 

When confronted with the choice of a urostomy  ( The BAG ) ... or a surgicaly fabricated internal neobladder; men will tend to favour the later.  Why .... because they fear that they will no longer be sexually attractive with a BAG .   WRONG !  .....

It makes no difference  ..... if you`re sensually attractive with your clothes on  .... how you look with clothes off won`t matter  ... and visa-versa .

The `BAG ` is the safest, least hassle.  With a conventional Urostomy you :

a. ... you won`t have to endure the 1-.6 mo neobladder training period before you can be dry during the daytime without having to wear a diaper

b. ... you won`t have to worry about peeing yourself when you cough or laugh ...

c. ... you won`t have to wear a diaper at night,

d. ... you will be less prone to Urinary Tract Infections

e ... and you won`t have to get up to pee during the night

I had my bladder removed 2 weeks after being diagnosed .. I was 45 .... that was 28 years ago ...am now 73... I have not had a UTI since

After 12 years, I lost total kidney function and a transplanted kidney was simply placed beside and connected to the ùrostomy (ileal conduit)

the urostomy takes  one half hour once a week to change ...  then forget it till next week  ... sometimes I have forgotten  .. .and gone 8- 9 days (not recomended)

My advice .... Be as informed as possible about the FACTS on ALL the options.

 

 

u4art

papa46 said:

I'm five years older than

I'm five years older than your Dad and was diagnosed with bladder cancer when I was sixty four.  Fought it for seven years with chemo and tumor removals from my bladder to the tune of 20+ surgeries.  Now it's invassive and I will be having an RC(radical cystectomy) on 9/6/17.  To be honost, it's been a rough seven years and I sort of wish that I would have had the RC from the beginning and not waited, but that can not be changed now.  I have decided, at my age, to have a urostomy with a bag as my age is the major factor.  Won't go into details on that one.  I might suggest that you follow this link https://www.inspire.com/groups/bladder-cancer-advocacy-network/?ref=as&asat=605362231 and have your Dad join.  Lots of information on bladder cancer

Papa 46 .... you`ve hit the

DUPLICATE

 

u4art

papa46 said:

I'm five years older than

I'm five years older than your Dad and was diagnosed with bladder cancer when I was sixty four.  Fought it for seven years with chemo and tumor removals from my bladder to the tune of 20+ surgeries.  Now it's invassive and I will be having an RC(radical cystectomy) on 9/6/17.  To be honost, it's been a rough seven years and I sort of wish that I would have had the RC from the beginning and not waited, but that can not be changed now.  I have decided, at my age, to have a urostomy with a bag as my age is the major factor.  Won't go into details on that one.  I might suggest that you follow this link https://www.inspire.com/groups/bladder-cancer-advocacy-network/?ref=as&asat=605362231 and have your Dad join.  Lots of information on bladder cancer

Papa 46 .... you`ve hit the

again

KMcFalls

U4art

u4art?  Your post is very informative, one of the best I have read.  I have T1, high grade cbladder cancer. Like you, I have been delaying radical surgery just from fear of having to wear a bag at a very young and active 67 years old.  Since I was originally diagnosed in June, 2016, I have endured 3 TURBT surgeries,  post surgery chemo, one 6 round session of BCG, one 3 round version of BCG w/Interferon, one 3 round version of BCG, and 4 cystoscopies... not to mention wearing a condom cath at nights due to frequent urination and the wall gripping burning sensation every time I pee.  Thinking I was now finally cancer free, my world was recently rocked yet again when my urologist discover cancer spreading through my lymph nodes.  He has now strongly recommended I immediately start chemo to hopefully eliminate the lymph node cancer.  If successful, he then wants to remove the bladder.  I am now at the mindset of removing the bladder and either selecting the bag or neobladder.  Again, after reading your post, I think you have helped me make my decision.  Also, I would have to travel a minimum of 200 miles for neobladder surgery but could have the bag surgery done locally by my own urologist.  Any other thoughts or words of wisdom you may have would be greatly appreciated. Thanks, Ken.

u4art

KMcFalls said:

U4art

u4art?  Your post is very informative, one of the best I have read.  I have T1, high grade cbladder cancer. Like you, I have been delaying radical surgery just from fear of having to wear a bag at a very young and active 67 years old.  Since I was originally diagnosed in June, 2016, I have endured 3 TURBT surgeries,  post surgery chemo, one 6 round session of BCG, one 3 round version of BCG w/Interferon, one 3 round version of BCG, and 4 cystoscopies... not to mention wearing a condom cath at nights due to frequent urination and the wall gripping burning sensation every time I pee.  Thinking I was now finally cancer free, my world was recently rocked yet again when my urologist discover cancer spreading through my lymph nodes.  He has now strongly recommended I immediately start chemo to hopefully eliminate the lymph node cancer.  If successful, he then wants to remove the bladder.  I am now at the mindset of removing the bladder and either selecting the bag or neobladder.  Again, after reading your post, I think you have helped me make my decision.  Also, I would have to travel a minimum of 200 miles for neobladder surgery but could have the bag surgery done locally by my own urologist.  Any other thoughts or words of wisdom you may have would be greatly appreciated. Thanks, Ken.

be informed

ak

The best information I can give is to talk to as many people as you can that have had the various procedures done.  i.e. neobladder, ileal conduit (aka bag), or Koch Pouch

Ask them SPECIFIC questions:  how often, how long, what time of day, what time of night time when,  to every daily life activity ---  bathing, swimming, hot tubs, getting up to pee at night, traveling, by car, by boat , by plane.....  ask them all from a list.     Why so many detailed questions ?     Because everyone will say they like what they have chosen, just like everyone likes their make of car ( to say they don't like their choice is admitting ignorance ... which no one will do). 

Contact your local United Ostomy Association ( you will have a branch near you ) ... attend one of their monthly meetings.

Make an informed choice  ... take all information gleaned from the internet with a big " Grain of Salt "  .....  Get the facts from people that have  " been there, done that"

 

Lazy_Bones

KMcFalls said:

U4art

u4art?  Your post is very informative, one of the best I have read.  I have T1, high grade cbladder cancer. Like you, I have been delaying radical surgery just from fear of having to wear a bag at a very young and active 67 years old.  Since I was originally diagnosed in June, 2016, I have endured 3 TURBT surgeries,  post surgery chemo, one 6 round session of BCG, one 3 round version of BCG w/Interferon, one 3 round version of BCG, and 4 cystoscopies... not to mention wearing a condom cath at nights due to frequent urination and the wall gripping burning sensation every time I pee.  Thinking I was now finally cancer free, my world was recently rocked yet again when my urologist discover cancer spreading through my lymph nodes.  He has now strongly recommended I immediately start chemo to hopefully eliminate the lymph node cancer.  If successful, he then wants to remove the bladder.  I am now at the mindset of removing the bladder and either selecting the bag or neobladder.  Again, after reading your post, I think you have helped me make my decision.  Also, I would have to travel a minimum of 200 miles for neobladder surgery but could have the bag surgery done locally by my own urologist.  Any other thoughts or words of wisdom you may have would be greatly appreciated. Thanks, Ken.

If surgery is in your future,

If surgery is in your future, have it done at an NCI-recognized facility - they do this all the time. And make sure that the surgeon has done "lots" of your diversion choice. I had the RC (radical cysectcomy) 3½ years ago, with the bag - ilieal conduit (IC). As the cancer had spread,  (metastisized), and I was given no hope of survival, I was put on an immunolgy drug - Tecentriq (atezolizumab), which has almost no side effects, and was NED (no evidence of disease) in six months.