Diagnosis: Urothelial AND small cell neuroendocrine carinoma
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Homepage – Forum › Forums › Muscle Invasive Bladder Cancer › Diagnosis: Urothelial AND small cell neuroendocrine carinoma

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  • March 15, 2024 at 5:32 pm #47513
    TerryL
    Participant

    I was diagnosed Jan 25 2024 and had TURB T done Feb 29 2024. Pathology came back to me March 12 2024. Appointment with urologist scheduled March 18 2024. The pathology shows I have a rare cancer found in less than 1% cancer patients. It has a poor prognosis.

    Final diagnosis is high grade invasive carcinoma with features of small cell carcinoma and urothelial carcinoma. Invasive into lamina propria at least.

    I original had telephone meeting with urologist set up for March 28th but got a call the day after pathology was sent saying he wants to move it up to this Monday the 18th.

    Right after my TURB surgery, while in recovery, my urologist told me that the tumor was larger than he thought, it’s invasive and he cant understand why my symptoms didn’t show up earlier than blood in my urine Jan 10 2024. He also told me my bladder would have to be removed.

    So, I am hoping that when we speak with one another Monday that he will have a plan set up for me and we can get the show on the road. I understand that I may go through several rounds of chemo, then radical cystectomy, possibly followed by more chemo

    Is anyone aware of this type of cancer? What to expect? Anything about chemo treatment?

    thanks

    Terry

    March 16, 2024 at 11:04 am #47516
    TerryL
    Participant

    Do most people get sick when going through chemo prior to rc?

    March 17, 2024 at 12:44 pm #47519
    VanKeith
    Participant

    Hi Terry,

    I’m a one to one peer support volunteer with Bladder Cancer Canada and a facilitator of the BC support group in Vancouver. I had chemo before my surgery to remove my bladder in 2017. I’m happy to share my experiences with you. You can reach me by email if you’d like to arrange a phone call. ktdbell@gmail.com

    Keith

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