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Don't want my bladder removed!!

2 years 3 months ago #55969 by Anne1989
Thank you for your reassuring words. I wish this forum could all meet in person. I don't know what we would do without this forum right now. I totally understand what you are saying Cynthia. It's just that my mother's GYN/Urologist at Mt. Sinai in New York should have caught this sooner and it just angers me that my mom has to pay this price. I almost wish that I could backtrack and know that even if it was caught at stage 1, treatments would not have worked and she will still have to do this. As you can imagine, I'm really angry this doctor didn't take the time to hear my mom's concerns of the blood and am mad at myself for being too afraid to look up bladder cancer and then I would have seen how it could be treated if caught early enough. I know my mom is in a great hospital with a highly respected surgeon, but I just hope he isn't thinking too hastily and not giving it a second thought about preserving bladder. I came across this online.

"Living without a bladder can affect a patient’s quality of life. Finding ways to keep all or part of the bladder is an important treatment goal. For some patients with muscle-invasive bladder cancer, certain treatment plans involving chemotherapy and radiation therapy (see below) may be used as an alternative to removing the bladder."

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2 years 3 months ago #55966 by Cynthia

Your Mom is being treating at one of the top places in the country for bladder cancer. I wish one of us could give you the answer you are looking for. But the reality is once bladder cancer becomes invasive the options are limited. I wish you could spend a day with me or anyone who has a diversion we live regular lives. It is a big surgery but with time we heal and get back to normal. I make that sound really simple emotionally it isn’t I know that, for me the panic attacks and sleepless night of worry are behind me. None of us would have wished for a Radical Cystectomy but I would bet that like myself all of us are happy it has given us the rest of our lives. Please take you fears and questions to your medical team understanding often brings exceptance.

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

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2 years 3 months ago #55964 by Anne1989
Trying to get all the answers I can before my mother's RC on 10/24. Trying to find some hope. My mom is at MSK innNee York under the treatment of a highly recommended Urologist. He says bladder removal is ONLY option. Anyone here refused it snd tried something else and it worked? One tumor is muscle invasive and one is not. He said her kidneys cant handle only radiation and chemotherapy combo. One kidney 84% and one 14%

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