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Chemo instilled in bladder

What can I expect as far as pain goes during the process of instilling chemotherapy in bladder? I am starting a six week program on November 7th. I am so afraid I will be in so much pain trying to hold my urine. My bladder is small and I am worried the pressure will cause problems especially if they clap the catheter which I am sure they will.

  1. @Communitymemberb5cea0 - Are you having BCG or chemo instillations? BCG is normally for stage 1 non invasive. I am not medically trained and did not choose to try BCG but know that with that treatment the side effects seem to vary greatly between patients. Some experience little such as fatigue, while others have increasing side effects as the treatment continues. If you are having a different treatment then possibly someone else can chime in with information. I am also not sure what you mean by clap the catheter. I know that some people are not able to hold the BCG for a long time. I highly suggest that you write down all of your concerns and discuss them with your doctor or PA prior to the first procedure. I wish you well with your treatments. Please keep us updated on how things are going. My best to you. Linda Urbanski ( moderator, Bladdercancer.net team member)

    1. I am having chemo as I have already had two different rounds of BCG. I meant to say “clamp” the catheter so that the urine cannot leak back out until the one hour is over. You are so kind to reply and I thank you for taking the time to care.

      1. @CommunityMemberb5cea0 - I am happy to hear that you found valuable information on this site. Having a group to support you thought a challenging disease can be invaluable. Please reach out with any questions or concerns and will will try to help out. My best to you. Linda Urbanski ( moderator, Bladdercancer.net team member)

      2. wishing you well with the next steps forward on your journey. Please let us know how you get on. Laura, Moderator, BladderCancer.net

    2. I had 15 Gemcitabine treatments and it was easier to hold at least for me. They only had me hold it an hour as compared to BCG at two hours. Catheter at the office, instillation and wait a minute or so to make sure it didn’t leak. Get dressed and go home. I hope it goes well for you. Even is different as to how they handle it. Others at my doctors apparently couldn’t hold it in I was told. All the best.

      1. @volsrider - thank you for responding with your experience regarding these treatments. It certainly makes a difference when those who have been through something share how things went for them. My best to you. Linda Urbanski ( moderator, Bladdercancer.net team member)

      2. thanks for sharing your experience with us. It is interesting for me as I don’t know much about this to see the difference in hold time for BCG. How are things going with you? Hope you are having a lovely weekend. Laura, Moderator, BladderCancer.net

    3. Things are well. I had my 25th cystoscope last week (I asked if there was a gift for the 25th anniversary) and I am waiting for the cytology report. My bladder is not as inflamed as it has been, so we will see if I am still NED. If I make it NED until first quarter of ‘23 then it will be the first time I have been two years NED. I also know that with an original dx of T1 HG CIS, there is the high potential of recurrence. My cancerversary was October 28. An eight year journey. What a story from where I started and what I now have learned. Have a great weekend.

      1. @volsrider - hoping that your scan comes back in your favor and you remain NED. This can be a long journey of ups and downs for sure. My best to you. Linda Urbanski ( moderator, Bladdercancer.net team member)

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