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Basic Questions

5 years 5 months ago #49124 by sara.anne
Hello, Paul, Your almost daughter-in-law is lucky to have you in her corner.

As for the questions about non-invasive "changing" to invasive, it is as question of time. If left untreated, non-invasive does grow and become invasive. That is why it is so important to find it early, and to treat it. She will probably be scheduled for cystoscopy about every three months for about two years, then every six months until five years have passed, and then annually forever. Unfortunately, bladder cancer does have a nasty habit of recurring, so it is very IMPORTANT that she keep these appointments religiously,.

While most cases of bladder cancer seem to have no known cause, smoking has been shown to be a strong factor. And, as Alan mentioned, some lists of causes do include hair dressers as being at higher risk. WE have some salons here that only do cuts...,and specialize in that. She might want to consider that type of employment.

Best of luck to all of you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 5 months ago #49122 by Alan

Welcome, glad you found our forum but, sorry you had to join!

1. A second opinion is always good and John Hopkins is a good choice.

2. Stats on what becomes invasive? I have seen stats from 1/3 to 2/3 of the time. Way to many variables in my opinion to worry about. One day at a time.

3. Pain 10 days out is too long. You are paying for the doctor, call them. It may just need pain meds or, an infection.

4. Hair stylists because of the chemicals involved according to some studies are at higher risk.

I have read from other posters that Duke does have a good reputation. This is beatable and non invasive also good news. Ask away or post as needed, someone should be around to answer.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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5 years 5 months ago #49120 by pdl17
My future daughter-in-law (they are getting married in November) is a 34 years old and was diagnosed with bladder cancer recently. She is being treated at a medical center affiliated with Duke University. Her biopsy report came up good news. She has 5 papillary non-invasive tumors with all samples showing the muscularis propria being present. Originally they were going to treat her with one dose of mitomycin when she received her TURBT but the scraping was intensive enough that he wanted her to heal for 2-3 weeks before proceeding. When the biopsy results came back, he changed his mind regarding the bladder instillation. Questions I have:
1. Even though the slides were read at Duke, should we send them to John Hopkins for a second opinion?
2. How often does non-invasive papillary cancer turn into invasive? Is there anything that can improve the odds?
3. She is still having pain on urination and she received her TURBT 10 days ago. Is this normal?
4. Her only risk factor is being a hair stylist. Should she change her profession or is the "horse already outside the barn" so to speak?


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