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12 years 10 months ago #7368 by Rosie
Wendy,

I am so glad you are clarifying that those with more advanced and invasive bladder cancers are more involved and posting in this forum. When I was first diagnosed I read posts that were consistently from those with invasive or those having a cystectomy. I thought that was going to be the general course of my journey. So little was posted on the various types and long term history on the various types and grades. Anyone who is new to this forum and clicks "the most recent posts" on some days only see posts from those with invasive or cystectomies. I like that you now have a link to the WEB CAFE that directs people immediately to the information they need for superficial that goes into detail and clarifies the differences and the newest treatments etc. I hope those new to the forum click that and read it first. Rosie

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12 years 10 months ago #7347 by wendy
Hi,

16 bladder infections...since your diagnosis in April '06? Wow...that sounds like a lot, but I'm not a doctor...if he says that's normal, well, sheesh is all I can say.

If you are nervous about getting a flexible cysto while awake, you could ask for some valium or something like that. Lots of people do. And make sure they let the numbing get have enough time to work...that will make it easier. It's the unknown that's worse than anything, you might find cystos aren't as horrible as you expect, although I have met one or two people that find it an awful experience but that's a big minority, most handle it quite well. It's over quickly...

Some doctors use propholactic antibiotics to prevent infection from a cysto but that is frowned upon where I live, in Holland, where antibiotics are being used very sparingly.

Grade 1 Ta tumors are the large majority of bladder cancer diagnoses, they tend to recur but progress very rarely. Most people with this dx don't hang around forums and message boards for blc because the majority of folks online have the more risky diagnosis, and that just might scare off the people like you...and my sister. She also had Ta, G1, recurred the first year, but only 1 tumor at a time. She has been clear for about 7yrs, they stopped occurring but we know it can always come back when least expected. But now we know enough to be able to sleep easily knowing that the chance this cancer will kill her is very very slim.

I sincerely hope your path will be similar to hers and that you're clear on the next follow up.

Keep us posted.
Wendy

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12 years 10 months ago - 11 years 2 weeks ago #7335 by egtmcsq

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