TCC Stage III/IV
5/12/00 Radical Cystectomy w/Continent Urinary Diversion (Indiana Pouch)
Update Sept 2005-Five Years,four months and still doing great! “Ditto” my Nov 2004 update.
Update Nov 2004: Cat scans, chest x-ray, urine cytology, blood work, etc. all indicate “no evidence of disease” … Indiana Pouch works great! Never any infections or other problems. I give credit to superior surgical skill and blessings from above.
E-mail me anytime . . . firstname.lastname@example.org
At the age of 53, in good health, never having smoked, worked around chemicals or cancer-causing agents, etc. no family history of cancer . . . I was taken by surprise when diagnosed. My symptoms of frequency/urgency and stress incontinence were evident only a few months. Only when I experienced pain on urination did I pay a visit to my family practitioner. Although I could not see blood in the urine, there were large amounts of red blood cells which caused immediate concern from my doctor. (I did not realize that the rusty colored urine indicated blood in the urine). After one week on antibiotics with no improvement I was referred to a urologist (thank heavens he did not waste time referring me). The Uro performed a cystoscopy on 4/10/00 and was shocked to find several, large tumors. One was low in the neck of the bladder and another blocking a urerter. He resected as much of the tumors as possible. I was immediately referred to a urologic oncologist in Atlanta. Another cystoscopy on 4/20/00 was performed to confirm the staging–the first pathology report only indicated a “suspicion of sub-mucosal invasion.” During this TUR he was also not able to remove all the the tumors but was able to get sufficient tissue to confirm that my BC was Stage III-muscle invasive; no way to save the bladder. Radical Cystectomy performed 5/12/00 with a great surgical team. Two urologic oncologists, their PA, and a terrific gynecological oncologist for the vaginal reconstruction. Three days in ICU, 12 days in the hospital and another six weeks post op recovery at home and I was back to work just 8 weeks post op. I was node negative and no evidence of mets outside the bladder so did not require chemo. I did not experience any adverse setbacks: no infections or complications. I credit that to superior surgical and nursing care, and to the answering of hundreds of prayers offered on my behalf.
My wonderful husband was a God-send. He went with me to every doctor appointment and stayed with me the entire hospital stay. He actively took part in learning how to flush the pouch, drain the urine, change the dressings, care for the tubes, etc. After one particularly terrible post-op night of vomiting and diarrhea, he held me lovingly and prayed for “his poor sweetheart” — despite the lingering odor of vomit in my hair.
A dear friend hung a banner in my bathroom that said, “YOU CAN DO THIS” . . . and it gave me strength and courage every day.
My sister and her “Prayers & Squares Quilting Ministry” made me a beautiful prayer quilt which never left my side in the hospital and while at home recovering. It too gave me comfort, strength and courage.
My recovery has been relatively uneventful. Learning how to irrigate the pouch and eventually catherize was scary and a little painful at first. But, hey . . . I’m a pro now! (I’ve cathed on an airplane at 30K feet–not having to sit on those stainless steel bathroom seats was a great advantage!)
I experienced some leaking and cramping the first few months with occasional “spurting” of urine. I took Ditropan XL for about three months and it helped tremendously to curb the spasms which was the cause of the spurting and leaking. Within a year the leaking was limited to a few drops that is absorbed by a small pad covering the stoma.
I can enjoy a decent night’s rest (11pm-5:30am) if I watch my liquid intake after 7pm. I’m sure to drink plenty of water during the day.
My children nicknamed my new bladder “Betsy” (short for Betsy-Wetsy–the doll that wets her diaper). That way when we are out somewhere and I say I need to take care of Betsy they know exactly what I mean.
I feel blessed to be here. I know my life has purpose and meaning–perhaps it is to be a spokeswoman for bladder cancer awareness.
This site is a great source of information and insight. Thanks to all of you who inspire me. I welcome email from the trenches.