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Newly Diagnosed

I’ve been newly diagnosed and advised that my bladder will have to be removed along with a ureter and certain other tissues. I welcome thoughts and recommended readings about approaching and coping with this. Thanks.

  1. - Happy that you joined this forum as it is very valuable. I assume that you have received a stage and grade for you cancer. That is normally the first step. I had RC/IC almost 7 years ago and am doing very well. Can you provide more specifics as to your diagnosis? Have you decided on a urinary diversion? This journey can be very overwhelming so we are happy to help you with support and personal experiences to make things easier. My best to you. Linda ( moderator, team member)

    1. Thanks for the response. T-2 aggressive. It has invaded the muscle wall. I have not decided on the type of diversion but am leaning towards the Ilial (sp?)’conduit as the simplest, but have not spoken with anyone who has had any of the diversions. To this point I’ve only spoken with the docs. I am grateful for insights.

      1. that is encouraging. Thank you. I needed some of that.

      2. you're so welcome! That's what we're here for! 😉 ~Liz, Moderator

    2. , I'm glad you joined this group. I found this group after searching for several weeks, I think after my surgery. I was diagnosed in January 2021. I had been having small blood clots in my urine on and off (mostly off) for a year. I think I had maybe 3 UTI's in my life. Suddenly, I starting having bright-red urine every few days. Went to my Dr. and there was no indication of blood when I was there and no indication of a UTI. Cat Scan ordered. Everything looked "normal" according to the results I received on that same day. My Dr. finally told me that he highly suspected bladder cancer. Urologist ordered a cystoscopy and sure enough, T2/HG. The tumor was 3-4cm according to the surgery report, and muscle invasive. I'm still amazed that a scan couldn't see a tumor that large. It was removed and I was then scheduled for a RC/IC. Bladder removed along with my cervix, uterus, fallopian tubes ovaries, lymph nodes, part of my vagina, and who knows what else until I have a long talk with my surgeon. No chemo ordered as they think they got everything after biopsies of all the organs they removed that were touching my bladder. My very best to you and from everything I've read and heard from Drs. the IC seems to have the best outcome in the long-term. I'm still scared every day but family support and this site are invaluable. Just don't let your family tell you what to do!!!! You can do this.....

      1. Thanks for sharing your story, . I always think it helps to hear other people's experiences. Sure wish this site was already in existence when I was first diagnosed! ~Liz, Moderator

    3. Wow! You guys are helping me stop feeling sorry for myself.

      1. Very thrilled to hear that . I don't think anyone will pretend it's a walk in the park, but we've made it through to the other side. So can you! 😉 ~Liz, Moderator

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