Radical cistectomy very soon for me

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jbalta
jbalta Member Posts: 5 Member
edited April 2022 in Bladder Cancer #1

Hello everybody. I am new to this group. After 15 months of BCG treatment, the cancer finally invaded the muscle. The doctors have recommended me to remove my bladder and replace it with a neobladder. I don't have many options, so I accepted. My operation is on the 29th of March 2022. Happily the operation will be at MD Anderson, one of the best hospitals in the world for this. I have read a lot about the pros and cons of neobladder. Frankly I am exhausted by it all. The cystoscopies, the BCG instillations, the anguish it all generates, etc. I hope that after the operation, I can finally put all the anguish generated by the cancer behind me and I can resume my life, as normally as possible. Fortunately, all the tests I have undergone indicate that, so far, the cancer has not invaded any other part of my body. And boy, have I been tested! If anyone would like to make any recommendations, that would be excellent. Thank you very much.

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  • ttttttttttttmmmmmm
    ttttttttttttmmmmmm Member Posts: 1 Member
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    🙏Hello,

    Sounds like you will be in good hands at MD Anderson. It is a great facility. My husband was diagnosed 19 months ago with the dreaded muscle invasive bladder cancer. Due to his age and health he declined treatment. You are so fortunate to be able to have this life saving procedure. Good luck stay positive. p.s I was diagnosed and treated for breast cancer 16 years ago and I am still here. I now try to enjoy life a little bit more because as I like to say😌

    "This is not a dress rehearsal"

  • barehead
    barehead Member Posts: 40 Member
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    If you would like to talk with survivors who have been through the neobladder procedure, you should contact imermanangels.org and/or ask your med team to speak with survivors whom have had this procedure at MD Anderson. It will give you a good insight in getting used to living with a neobladder. You can also speak to folks whom have had a urostomy (stoma with external bag) to get their insight. It is your decision to select the diversion that you wish to have (unless there is a medical reason to avoid one). Also, if you have not accessed the information at bcan.org, it has the best medical information on bladder cancer and its treatment on the internet. Every success on getting back to a new normal.

  • jbalta
    jbalta Member Posts: 5 Member
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    Thanks a lot for your kind comment. Best regards

  • jbalta
    jbalta Member Posts: 5 Member
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    Thank you so much! This is very helpful. Best regards

  • rvezina
    rvezina Member Posts: 7 Member
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    Bladder removal is surprisingly not that bad once you recover. I had it in October 2021. One thing I’d like to mention is the tests cannot tell if your cancer has spread until you can see it on a CT Scan. Best of luck to you. Keep getting periodic CT Scans after the operation.

  • jbalta
    jbalta Member Posts: 5 Member
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    Thank you very much for your kind reply. Surgery was a success. They removed the bladder and prostate and successfully created a neobladder. Pathology of the bladder revealed that the cancer had not spread. In fact, they found no evidence of cancer in the bladder itself. Quite a success. I still have the catheter in place, which will be removed on Monday, March 25. My recovery is progressing well and fast. I am very aware that I will have to check myself regularly for at least 5 more years. At the moment my concern is one: how easy / difficult / traumatic is the self catheterization? Any ideas or comments? Thank you very much.

  • rvezina
    rvezina Member Posts: 7 Member
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    I did the ostemy bag instead. I don’t think I could do the self catheterization.

    Hopefully someone on this site can answer you.

    best of luck to you going forward.

    I’m starting immunotherapy tomorrow. My cancer spread to my lungs

    praying it works.

  • rvezina
    rvezina Member Posts: 7 Member
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  • jbalta
    jbalta Member Posts: 5 Member
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    I will most definitely pray for you!! Best of the best.