The Bladder Cancer Advocacy Network Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

ONE YEAR NEOBLADDER ANNIVERSARY

FloridaBen
  • By FloridaBen · New reply 6:52 pm
  • Journal · 22 replies · Photos
  • January 28 is my one year anniversary for RC surgery and Neobladder. Joyce and I celebrated a bladder cancer free year by kayaking a couple of days on the Little Manatee River here in Florida, 5 miles ...

Fatigue Eight Weeks Post BCG

lcov
  • By lcov · New reply 6:39 pm
  • Journal · 6 replies
  • Hi Everyone, My husband completed 6 BCG treatments. It's now eight weeks since the last treatment and he is still very fatigued. Has anyone else experienced this? Thanks so much, Laura ...

Hgh Grade Agressive Urothelial Cancer

tenorette
  • By tenorette · New reply 6:28 pm
  • Discussion in Newly diagnosed · 23 replies
  • My husband was just diagnosed with this and the surgeon wants to remove the kidney, ureter and part of bladder cuff and insert mytomycin C into the bladder. But he also suggested we could try chemo first ...

Beware of beet juice!!

Realdawg
  • By Realdawg · New reply 6:24 pm
  • Discussion in Living with non-invasive bladder cancer · 1 reply
  • A little humor here -- six month survivor, stage 1 grade 3 -- non-invasive. But I go in Feb. 10th for my three-month check and hopefully am still free of this crap. Funny story though -- am trying to ...

Colnoscopy AFter RC

John6
  • By John6 · New reply 5:50 pm
  • Discussion in Life after radical cystectomy · 4 replies
  • Has anyone had any problems having a colonoscopy after having an RC? I had 15 inches of my intestine taken out to form my ileal conduit. I was curious as to how this would affect having a colonoscopy ...

What condition were you in before RC?

cptratty
  • By cptratty · New reply 5:25 pm
  • Discussion in Life after radical cystectomy · 25 replies
  • I am 52 and have had cancer for 2 years. It began in a kidney (removed) and now its non-invasive in the bladder. I had Cis/Gem after the nephrectomy, 2 Turbts, and BCG (2 regimens) for the bladder. A ...

How long are you tired after removal of Bladder?

Crockett22
  • By Crockett22 · New reply 5:18 pm
  • Discussion in Caregivers corner · 25 replies
  • Hubby had bladder removed robotically 2 weeks ago. No other problems. But extremely tired all the time. Any suggestions ...

Mem. Sloan Kettering New York city

Ronvin
  • By Ronvin · New reply 5:16 pm
  • Discussion in Newly diagnosed · 11 replies
  • Hello all, I am seeing a Dr. Bockner at Sloan Kettering NYC in a few weeks. Has anyone had any experience with him ...

Anyone use a stoma hole cutter?

ohhhcrap
  • By ohhhcrap · New reply 5:15 pm
  • Discussion in Life after radical cystectomy · 15 replies
  • I have a stoma hole cutter from nu-hope that I find difficult to use. The directions are pretty straight forward to apply pressure then rotate, but this I find is almost impossible. First the amount of ...

Must decide: IC or neobladder

FenGuy
  • By FenGuy · New reply 5:02 pm
  • Discussion in Life after radical cystectomy · 11 replies
  • I'm facing RC on March 12, and I need to decide between having an IC or neobladder. Im nearly 63, in good health, active, hiking, backpacking, nature, and an occasional swim in very cold alpine lakes ...

Had TURBT yesterday

Ronvin
  • By Ronvin · New reply 4:27 pm
  • Discussion in Newly diagnosed · 18 replies
  • Hello all, I had my TURBT yesterday. Doc had to do a lot of scraping and cortorized most of the lining of my bladder. I have a bag for a week but I've been having intense bladder spasms since yesterday ...

Increase in PSA

bcwife
  • By bcwife · New reply 4:19 pm
  • Discussion in Life after radical cystectomy · 8 replies
  • Jim did great on his CT at 4.5 years out from diagnosis he had a clear CT. He went to the oncologist to get his results and an exam and lo and behold his PSA is up from where it had been.. I believe it ...

Nephrostomy tube

mcmass
  • By mcmass · New reply 4:07 pm
  • Discussion in Caregivers corner · 7 replies
  • Got tube inserted yesterday. Now sudden stabbing pain. Par for course? Or ER time ...

before during BCG suspend taking antinflammation supplements?

sandra_m
  • By sandra_m · New reply 3:33 pm
  • Discussion in Living with non-invasive bladder cancer · 8 replies
  • Hi, I am taking Zyflamend to reduce inflammation. Will have BCG maintenance treatment next week; was told by one doctor to suspend Zyflamend a week before BCG...however another doctor was not concerned ...

Only one question!

Kyle9
  • By Kyle9 · New reply 3:15 pm
  • Discussion in Help desk · 20 replies
  • I've read so much about NCI designated hospitals. Is there anyone here who does not go to an NCI hospital for bc treatment. I know of good hospitals not far from me which are not NCI designated hospitals ...

Is anyone doing research on collection bags?

Betbet
  • By Betbet · Posted 2:58 pm
  • Discussion in Life after radical cystectomy · 0 replies
  • Just wondering if anyone knows of a company doing research on collection bags after bladder removal. I do not like the leg bags and have been using a "belly bag". Because the connection to the UROSTOMY ...

Interferon

lytestyles
  • By lytestyles · New reply 2:54 pm
  • Discussion in Treatment choices · 5 replies
  • I just read that someone has 1/2 BCG and Interferon. This is the first time I have read Interferon being used for Bladder Cancer. I know it it used for other cancers.................what does everyone ...

Seeking innovative/forward thinking dr for bladder and ureter cancer CIS

NanR11
  • By NanR11 · New reply 1:24 pm
  • Discussion in Taking charge: How to be a proactive patient · 11 replies
  • Hi all, I am seeking an expert dr specifically in CIS of the bladder and ureter. My dr is doing BCG only, and I'm told if I have one more tumor I'll need my bladder removed. I know there are other protocols ...

Question? Odd sensation/feeling ...

Waikato
  • By Waikato · Posted 1:13 pm
  • Discussion in Living with non-invasive bladder cancer · 0 replies
  • Been meaning to ask even though we are all different BUT... Since I first bled out for two days then being diagnosed then surgery for a TURBT then asking my urologist @ 3 month check up being told you ...

Slower Than "Average" Recovery

cotcjim
  • By cotcjim · New reply 12:37 pm
  • Discussion in Life after radical cystectomy · 14 replies
  • I have read a lot of posts on this site and greatly appreciate them. I have learned a lot and been greatly encouraged. But there can be drawbacks too. I had a RC with neobladder on 6/27/2014, 7 months ...

Log in to see more

Don't have an Inspire account? Sign up now!

Forgot password?

Things you can do

Support BCAN

Help the Bladder Cancer Advocacy Network reach its goals and support people like yourself by making a donation today.

Donate to the Bladder Cancer Advocacy Network

Discussion topics

Resources from BCAN

BCAN on Facebook

Like the Bladder Cancer Advocacy Network on Facebook

Community leaders

About this community

The Bladder Cancer Advocacy Network Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Bladder Cancer Advocacy Network, an Inspire trusted partner.