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Kathleen-Ts Story

8 years 11 months ago #38228 by Cynthia
Kathleen-Ts Story

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
The following user(s) said Thank You: rkp

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8 years 11 months ago - 8 years 11 months ago #38226 by Kathleen_T
I recently “graduated” to invasive bladder cancer, something I hadn’t planned on. When I first found this place (actually the WebCafe that preceded it), I never read past the diagnosis and superficial BLC sections. Silly me. Now I read everything I can get my hands on (abstracts of everything, anyway).

I was diagnosed by accident in March 2007 after my rheumatologist ordered an ultrasound of my abdomen. She was interested mostly in my kidneys, but the scan showed “some debris or possible mass along the left wall” of my bladder. This was after more than a year of intermittent blood in my urine, treated always as a bladder infection. That kidney ultrasound got me to a urologist.

A few weeks later, my first TURB found “well-differentiated papillary urothelial/transitional cell carcinoma (Grade 1/3). No infiltration seen.” Didn’t seem too bad, and neither did the ensuing cystoscopies and the next four TURBs. But I kept producing new tumors, even after a one-shot dose of Mytomycin-C after the second procedure and six weeks of BCG therapy at the end of 2009.

Then the other shoe dropped. A TURB in March of this year showed high-grade tumors that had invaded the lamina propria: Stage pT1. Oh-oh! Didn’t like that. Nor the follow-up TURB in May: high-grade, invasive, “focal superficial invasion of muscle.”

My urologist referred me to Dr. Colberg at the Smilow Cancer Center at Yale-New Haven. He did a TURB last week which confirmed the earlier results and found more tumors (just 5 weeks since the last procedure), in the muscle, fairly large, and he told me I need to have my bladder removed, soon, but after about three months of chemo. I am going to meet with the chemo doctor on Tuesday and set up a schedule.

I am also pursuing a second opinion at Sloan-Kettering. Patricia here, my back-and-knees (sports medicine) doctor, and my own awareness of having only one bladder to give were all the encouragement I needed. Dr. Colberg — who has both male and female patients himself — gave me names of two other doctors to consult at Sloan, and that process is also in the works.

This forum is a godsend. Its members put a human face on this wretched disease. Thank you all.

— Kathleen

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