Tales From the Trenches: Survivor Stories

The ongoing nature of the battle with bladder cancer has led some survivors as well as caregivers to refer to themselves as warriors. Many thanks to the people here who have generously shared their experience. Your courage, tenacity and humor are an inspiration.

Rare tumors / Urachal Carcinoma

A note to the newly diagnosed: Learn more: staging and gradingnon muscle-invasive bladder cancer muscle-invasive bladder cancerAbbreviations used

Bladder Cancer-Not Just for Old Folks!

Non muscle-invasive TCC

  • Allison – Non muscle-invasive, low grade bladder cancer
  • Ken Hulse – hematuria for two years before diagnosis, clean for five years
  • Paul R BCG for high grade TCC/CIS
  • Fred BCG+IFN followed by systemic chemo for muscle-invasive TCC
  • Brian Gulino carcinoma-sarcoma of the bladder and BCG
  • Carole Smith Fighting since 1994-BCG, Mitomycin, many TUR’s
  • Pat Silveria Keeping TCC in check with BCG + immune stimulants
  • Paul Carr Refractory CIS/Valstar
  • John Stroop BCG, BCG+IFN, BCG+IFN+IL2, Mitomycin C – staving off Cis since 1997
  • Gary’s BCG diary
  • Rosie – BCG, watchful waiting vs. surgery, bi-polar instrument, Mitomycin C

To RC, or Not to RC… How one man with Ta, Grade III TCC+CIS came to his decision to have a radical cystectomy after seven opinions – Read Dan’s Story

Muscle-invasive Bladder Cancer

Cystectomy with ileal conduit and external appliance

  • Diane – 20+ years since surgery and still doing well

Cystectomy with continent internal reservoir (pouch)



  • Bill Lanius: One Lucky Geezer Bill tells about getting the Florida pouch
  • Ben Olsen Long term bladder cancer survivor (Kock pouch)

Cystectomy followed by (urethra-sparing) neobladder


  • Tim – Nerve-sparing success story!
  • Captain Dave 47 yrs; T1-G3 – RC, post op pathology: T2a-G3
  • Ken Z: “I went into surgery with aggressive high grade stage T1 and came out with aggressive high grade stage T3aN0Mx.”
  • Robert Happy Neo-bladder recipient
    Ken G Neobladder at age 46
  • Larry Cystectomy, neobladder followed by M-VAC after p53 tested positive at USC/Norris
  • Bill K. Continent reservoir from Skinner/USC Norris


Muscle-invasive Bladder Cancer-Bladder Sparing (TUR+radiation+chemo)

  • Mike Mann  ‘Combined modality
    – March 2009 makes it ten years out, and still doing well.
  • Cyndi – a woman’s experience with combined modalites, treatment failure and subsequent bladder removal

Upper tractTCC – transitional cell carcinoma of the renal pelvis (Kidney TCC) and/or ureter

  • Seth Briliant TCC of the renal pelvis
  • Paul S. Morton Jr Surgery for TCC of the renal pelvis and ureter, BCG treatments for TCC bladder
  • Sally Surgery, chemo for TCC bladder, renal pelvis and ureter

Metastatic bladder cancer

  • Susan – Delayed diagnosis, stage IV, near New Orleans post Katrina

To contact any of the above authors who have chosen not to include their email address, you can send questions or comments to the webmaster for forwarding.

created 1999-07-01
last modified 2019-03-05