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Mom has stage 2 bladder cancer getting radical cystectomy

2 months 2 days ago #55955 by Anne1989
Thank you Alan,
I just wish there was a way around not losing her bladder. I know one tumor was muscle invasive snd one was not. I keep thinking I should have encouraged her to get a second opinion in June and she woukdnt have had go go through this. Good questions Alan. I really appreciate it.

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2 months 3 days ago #55954 by Alan
Anne, you are asking all the right questions for your Mom. Pat yourself on the back, it affects you too! I am adding a file that has lots of good questions (just pick and choose the ones that fit you) that I copied from someone else as I have not had to have a cystectomy. I have had a triple bypass along with a few hernia and carotid artery surgeries. Almost all abdominal/torso surgery recoveries are marathons NOT sprints. Meaning listen closely and do EXACTLY what your doc's tell you to do. Listen to your body and most of the time it is NOT push the envelope but more like work until a little fatigue. Usually lifting no more than a gallon of milk if that much, which 8 pounds. As Cynthia said, walking is always good stairs are probably a few weeks wait..

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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2 months 3 days ago #55952 by Anne1989
Thank you so much cynthia! I'm so happy this forum exists! I have a feeling I will have more questions again soon! Thanks again!!

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2 months 3 days ago #55951 by Anne1989
Thank you so much cynthia. I'm still in disbelief that this is happening. I know it's different for everyone, but how long does it take for stoma to go down in swelling?

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2 months 3 days ago #55950 by Cynthia
Ask her doctor when she can do stairs post op. My husband and I found that getting a notebook and putting our questions in it and the doctors answers. We went to all my appointments together and he would take notes. If you or someone can do that it helps a lot. It has been a long time but I remember I could not do steps for some weeks, lift over a certain amount or drive. This surgery will take the starch out of you. When I came home I needed help, housekeeping, nourishing easily digestible food, getting her up and going, and help getting out of the shower. But as time went on I got stronger and within four months I was dancing at a friends wedding. How fast someone heals is as individual as your finger prints and influenced by many things. But again ask your Moms doctor what is average. You all can get through this. I always looked at it as a hard journey to the other side of wellness. A step at a time, first surgery then recovery, then regular checkups. Don’t worry about knowing every thing at once just what you need to know for the next step you all will learn as you go. And we are here if you need us.

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 months 3 days ago #55949 by Anne1989
Thank you thank you Cynthia\! My mom is asking about stairs. I guess stairs shouldn't be a problem?

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