Just Diagnosed

7 years 3 months ago #52401 by sara.anne
Replied by sara.anne on topic Just Diagnosed
Hello, Raya, and welcome to our very exclusive club...wonder why no one ever joins willingly!

Most of us will never know exactly what caused our bladder cancer. Yes, statistics tell us that there are things that seem to be related...smoking is the obvious one, but many many people do not seem to have any particular risk factor.
This is true of most cancer.

You are doing absolutely the right thing in moving your care to a place like
MSK. First of all, with the questions that the path report left hanging, and second with your dissatisfaction with the communication from your current urologist, now is definitely the time to switch. You and your urological team will become best friends and the relationship will continue for a long time, so you want to be comfortable with it. I wish more patients would follow your example.

Yes, you are sort of up in the air about what comes next, and MSK should provide some answers. Unfortunately, your imagination is all you have until then and it is a troublesome friend. It is even possible that MSK may do a second TURB to clarify the situation.

Try not to obsess about this (easy for me to say) and know that you are much closer to some answers.

Please know that we are here for everything from trying to answer questions, to listening to you rant, to commiseration.

Please let us know what happens...and the best of luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: dani

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7 years 3 months ago #52400 by raya
Just Diagnosed was created by raya
Hi,

I am new to the site, 54, excellent health, physically fit, very active, never smoked, no chemical exposure and no family cancer history and was just diagnosed with Urothelial carcinoma. I had 3 tumors removed from my bladder on 11-18-16. I am told 2 were superficial and one invaded the lamina propria but the report also states that there was no muscle in the samples submitted to confirm muscle invasion. The process has been quite frustrating and slow moving. Blood and clots in the urine off and on for a year. Had a CT scan early on (March of 2016) and they said blood was from stones in the kidney and that was it. In the last 3 months it has gotten worse and at times is painful. I called a Urologist and he performed a cystoscopy and followed up with the resection on 11-18-16. I never received a call from the Urologists after leaving repeated messages for the pathology results and finally went to my family Dr who had the results for a week. I have reached out to Memorial Sloan Kettering in New York which is 2 hours from my house to take over. I am waiting for an appointment after they review the pathology report. In the meantime, I am worried sick and don't know my next steps and still have not spoken to a Urologist 2 weeks after tumor removal. Bladder removal? Chemo? BCG? I realize there are no answers until I sit down with the Urologist. Thanks for letting me rant

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