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Painful treatment process of bladder cancer

This year in April I was diagnosed with bladder cancer and had my turbt done straight away. I was high grade stage 1 bladder cancer and was advised to do BCG therapy
After my 4th dose, I experienced severe painful urination and increased frequency which led me to go washrooms every 15 mins.
Just wanted to ask everyone how did their treatment go and their journey with it so far

And what all you did to ensure minimum side-effects

  1. hi. Hoo ok we are you today? I am not medically trained nor have I had this treatment so can’t provide any personal experience. However do know from reading the experiences of others, as BCG treatments progress, for some people side effects can be more prominent. Laura, Moderator,

    1. I had 14 BCG installations and now halted because it does have an accumulative effect. It gave me chemical cystitis which I still suffer from several months later. It has done the job it was meant to do but I have had to pay a price for it. Apparently I am the "one in ten" who can be affected by this treatment. People generally can tolerate it far better than me so I am clearly the exception to the rule. Keep the faith.

      1. thanks for sharing your experience. Are they giving you anything to treat the chemical cystitis? Sending healing thoughts your way. Laura, Moderator,

    2. No they don't seem to have any direct answers. I have seen a doctor and they want to prescribe drugs that relax the bladder. I'm loathe to take them simply because they are designed to stop frequency and end up causing retention which in turn gives me pain or cramps. Bit between the devil and the deep blue sea.

      1. @Jacaranda 07 - I am wondering if there is an alternative medication that would be available to you. I know that when I had bladder spasms years ago, it helped with my spasms but did not cause retention. Maybe something else is available to try? My best to you. Please keep us updated on how you are. Linda Urbanski ( moderator, team member)

      2. I found the drugs for OAB the same. I hated the burning and retention I felt. The BCG does a lot of damage even though it also does eat up the cancer. Getting ready to have #13, 14 and 15 early August. Its really awful getting up at night a lot as well as frequent potty trips.

    3. I have received induction (6 doses) + 1 dose of maintenance BCG so far, I underwent the same problems that you are experiencing but from 1st dose, my doctor gave me Solifenacin, and some strong painkillers after which my symptoms reduced, I get cystitis for a couple of days after BCG, I take the pills for those days and rest of the days I am good, I am not sure if the drugs are working or my pain perception has gone down or my pain endurance has gone up or a combination of all three, point being
      You will eventually tolerate this better with time
      In the unlikely possibility that you don't, you will be offered an alternative (with a slightly lower efficacy )
      My prayers for your speedy and comfortable recovery

      1. thanks for sharing you great and informative experience. Laura, Moderator,

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