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Ready to tell my story
Hi everyone, after purusing this site on and off since being diagnosed back in late June, I am ready to share my story. I started seeing small blood clots in my urine in June. I have a history of kidney stones and assummed I again needed an ESWL of which I have had 2 before. I went to my urologist who did an in-office cystoscopy who promptly discovered I had 3 papillary tumors, in other words bladder cancer. Say what? Me? No way. I don’t smoke, don’t work with chemicals, exercise, eat right, am the picture of health. He explained to me the procedure of TURBT and BCG treatments and scheduled me for surgery. In the meantime my husband was not comfortable with this physician as he was quite elderly, so we asked an MD friend who he would go to if it was him and he gave us a name of another physician, who thankfully called and got me in and was able to operate on me within the next couple days as I had already had all the lab work, etc done for the other physician. The TURBT wasn’t as easy as I thought, I bled more than the MD liked so he kept me overnight with the catheter in and I ended up having to go home with the catheter for a week. What a relief to get that out! I had my 1-week appointment to discuss the pathology and was diagnosed with low grade TA papillary carcinoma. He suggested BCG treatments because I was an atypical case. I completed the 6-week treatment with ease had no side effects whatsoever. Went for my 3-month followup cystoscopy last Monday and he saw a spot he did not like and biopsied it. I saw him again this Monday and good news, it was indeed another low-grade carcinoma, bad news the BCG did not work. I am scheduled for another TURBT of this area this coming Monday and I noticed on my paperwork that I received in the mail today that it says TURBT and Mitomycin so from what I have read this seems to be a standard protocol for recurrences. I trust this MD as he comes highly recommended, but I guess I would like to know what I might expect next or any questions I should be asking before the TURBT or after. I am trying to stay positive here as much as I can. Why is it timing of this kind of thing is always so wrong. My daughter gets married at the end of this month and I am so looking forward to that, but having to deal with this inbetween and put on a brave front is hard.