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Homepage – Forum Forums Muscle Invasive Bladder Cancer Mibc post chemo prior to rc

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  • #46916
    nicolemarieta
    Participant

    <p style=”text-align: left;”>Hello all.</p>
    My dad was diagnosed with MIBC T2 back in 2022 after his major colorectal surgery. It has been tough on my dad physically and emotionally.

    Throughout 2022, the urologist surgeon suggested to do a radical cystectomy without chemo but given his situation of how much he suffered during his colorectal surgery, he decided to put it off.

    Fast forward to September 2023, my dad had finally decided that he is ready to undergo surgery. However, the surgeon did not give us good news. His CT showed that the bladder tumor grew larger (from 2cm to 9cm) with an enlarged lymph node beside the bladder. Therefore, surgery is no longer an option, unless he undergoes chemotherapy to shrink the tumor. If all goes well, then we can proceed.

    Last week was my dad’s first chemotherapy session. Hes in ddMVAC regimen 4 cycles. The first 2 days he was okay. But thereafter he started to feel weak and nauseous and his bladder pain worsened. His pain is severe whenever he pees. He said that he gets this burning sensation in his penis as well as bladder pain when it contracts. So painful he is screaming in pain. He went to the hospital 5 days post chemotherapy and was admitted due to hyponatremia and anemia. He had received lots of fluid to correct his sodium levels and 1 rbc transfusion to correct his hemoglobin levels. His WBCs and neutrophils are good.

    However, i just received the news today that his creatinine levels are increasing and needed to undergo CT scan to check his lower abdoment/kidneys. Prior to chemo and his first bloodwork in the ER his creatinine level is normal.

    I am very frustrated and scared at this point when the doctor told us that his creatinine levels are creeping up. She was not really giving me a solid picture of the situation at hand as to why it went up. Yesterday, they told us he might get discharged today, but then another issue arise. It breaks my heart to see him in pain.
    <p style=”text-align: left;”>Is there anyone who got through the same situation? Should we have considered a 2nd or 3rd surgeon opinion prior to chemo? Is having high creatinine levels indicate possible kidney issues? What questions should i ask the doctors regarding this? Communication is not our best strength but we are trying our hardest.</p>
    Thank you so much in advance for your help! Happy New Year to all~

    • This topic was modified 6 months, 2 weeks ago by nicolemarieta.
    #46922
    marysue
    Participant

    Hi nicolemarieta:

    Happy New Year to you but sorry to learn of your father’s difficulties.  I did not have muscle invasive bladder cancer but did have a recurrence of non muscle invasive bladder cancer in September 2022.  My urologist recommended that I have Epirubicin (chemo) put in my bladder after the TURBT surgery to remove the tumour to help prevent another recurrence.  While instilling chemo in the bladder is different from having chemo via the IV it can have some side effects.

    My kidney function was affected by the chemo even though it was just in the bladder.  My creatinine was high and globular filtration rate was very low for 2-3 days post op. The only answer that my urologist had was that the drug possibly went through the surgical site and into my blood stream. Thankfully everything corrected itself on its own.  I hope I never have to have a bladder cancer surgery again but if I do I will be very hesitant to have chemo of any type due to this reaction.

    As for your father it sounds like his kidneys got whacked by the chemo treatment.  I would strongly recommend that the doctors look at his kidneys and kidney function to make sure that nothing is amiss and/or that they will recover okay on their own.  Many people do have to stop chemo because of the effect it is having on their kidneys.  I would also insist that they maybe do a cystoscopy and check the inside of his bladder to see what is causing the pain.  I don’t know if IV chemo can cause bladder inflammation or not but the bladder wash that I had post op last year did that to me and it was very painful to pee for several weeks.  I had trouble sitting, bending over, standing up etc.  I could not do these movements without a lot of pain.  It also affected future bladder treatments so much that I had to stop.

    I’m not a doctor so I can’t be sure if I’m right about what I said above, but I would ask the doctors to check his kidney function and the inside of his bladder to see what is going on.  If the current doctor doesn’t want to do anything then I strongly recommend asking for a second opinion.  Best Wishes.  (((HUGS)))

    #46949
    nicolemarieta
    Participant

    Hi marysue,

    Thank you for your kind response! My dad finally did a CT scan today but we are still waiting for the results tomorrow. The nurse noted to us that he may need to have nephrostomy tubes inserted on his side.

    I still have a lot of thoughts and questions in my mind because i really want my dad to have a long life. He is only 57 y/o.

    Should we have not done chemotherapy? Why did his surgeon not want to operate on him when he was still strong and ready? I would think that a 9cm tumor should be removed right away to remove his pain. Is there a limit of tumor size that they can operate on without chemo first?

    I am hoping and praying that the tubes will save and prolong his life. But i know this is going to be hard.

    Is there anyone who had experience with nephrostomy tubes? I would love to hear your story.

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