Bladder Cancer Support Group

Bladder cancer is a disease in which abnormal cells in the bladder multiply without control. The greatest risk factor for bladder cancer is a genetic predisposition; it's also associated with smoking and occupational exposure to certain dyes (such as in textile factories), petrol and other chemicals. If you or a loved one has been diagnosed with bladder cancer, we're here...

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Cancers
/ Bladder Cancer Support Group

Bladder removal - need info!!!

deleted_user
deleted_user
Hi, I just joined this group because I found out my dad might have to have his bladder removed.
He's had BC for a few years, and after several courses of BCG (the last one left him showing symptoms of TB) and lots of surgeries to burn the tumors, they're saying they can't keep up with it and will need to remove his bladder.
I don't know where to look to do research. My dad lives in the middle of nowhere, so the number of doctors that can treat this is very low (like 1, probably).
I'm really worried, and I have numerous heal issues of my own, and my spouse isn't too keen on me doing all this research when I have lots of siblings that don't even try.
Can anyone direct me to some good sources of info?
BTW he hasn't smoked in at least 35 years, but he used to drive trucks and "held it" a lot.
deleted_user
deleted_user
I have lots of sources but the best thing to do is to type in Bladder Cancer in Google and research from the links you will get. You will get many. Check out www.uoaa.org which is a support group for people with stomas. Joiin the group type in your question or problem and you will get tons of very helpful information. They have some very dedicated and knowledgeable monitors. Your father will come home with a ileal conduit (Stoma) Google Ileal Conduit.
The hard part will be after the surgery of finding a WOCN ( wound nurse who knows STOMA's). He will need help applying the appliacne, getting supplies, and learning to do it himself. It is not hard,it just takes time. In the meantime start your research, get samples of products from the various companies;they will be happy to send you samples as they make a lot of money if you use their products. If more info is needed send me Email at pauls09165@hotmail.com
deleted_user
deleted_user
I have lots of sources but the best thing to do is to type in Bladder Cancer in Google and research from the links you will get. You will get many. Check out www.uoaa.org which is a support group for people with stomas. Joiin the group type in your question or problem and you will get tons of very helpful information. They have some very dedicated and knowledgeable monitors. Your father will come home with a ileal conduit (Stoma) Google Ileal Conduit.
The hard part will be after the surgery of finding a WOCN ( wound nurse who knows STOMA's). He will need help applying the appliacne, getting supplies, and learning to do it himself. It is not hard,it just takes time. In the meantime start your research, get samples of products from the various companies;they will be happy to send you samples as they make a lot of money if you use their products. If more info is needed send me Email at pauls09165@hotmail.com
Hope you find support dealing with this.
deleted_user
deleted_user
Thank you so much!
I think my mom is going to learn to care for it, because as it is now when he has a catheter she flushes it out to keep it from clogging and stuff. Glad my mom is good at this stuff!
Thank you for your help. :)
deleted_user
deleted_user
Go to BladderCancerWebCafe.com My husband was diagnosed in Oct. '06 and had his bladder removed in Dec. '06. He was very fortunate and had a "neo-bladder" - so no bag. No matter what your dad has, the Bladder Cancer Cafe is full of wonderful, educational, supportive advice. It's a great place for the family members too. Good luck.
deleted_user
deleted_user
I had my bladder removed 7 years ago due to urethral cancer that spread to my bladder. I have a continent urinary diversion. I have been through chemo twice and radiation once. Please make sure your dad gets to a doctor that has experience in bladder reconstruction. It is worth traveling if necessary. I am also a member of UOAA and the people and connections have been very valuable.
God Bless.
deleted_user
deleted_user
hey....I am a 36 yr old female and had my bladder removed in Dec, 08. It really seems like the end of the world but its not. The surgery is major and the cut is really the only healing. I have a stoma which is where they pull part of your small intes. out thru your side and you have a bag. You have no feeling in the stoma and honestly I really haven't had to many issues once I found the right type bag for me. Sleeping has been my main issue. I use to be a belly sleeper and that is no more. If you want to talk further let me know.........
deleted_user
deleted_user
Check out www.uoaa.org a Stoma suport group. Great info after you get your stoma or neo bladder.
I have urostomy so not much help with a Neo.
deleted_user
deleted_user
I am replying to the post about night time and sleeping. I use a night drainage bag, and a velcro strap to the side of the leg the stoma bag is on. I can not sleep on stomach, but can sleep on either side. You just hqave to remember to be sure your hose is not tangled. I keep the night bag in a bucket in case of leaks but actually have never had one. I have pulled the night tube out when squirming around.
I use a coloplast mini bag at night and this reduces the bulk and length of the night bag. Works great for me.
If you need more info just post.
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