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  • #43959
    Gibson19
    Participant

    Hello

    I was diagnosed with bladder cancer May of 2022. Had my first TURBT surgery in June. They found 2 nodules. One was high grade cancer the other was benign. The doctor recommended I not have the BCG treatment at that time but to have a cystoscopy in three months.

    I had the cystoscopy in September revealing both nodules were back. In December I had a second TURBT surgery.  The results were back in just over a weak which was amazing.

    The cancer was now all low grade which was encouraging for sure. The doctor will call me in January to discuss whether or not to have the BCG treatment. I am leaning to having the treatment.

    Just looking for thoughts and your input so I can make a informed decision.

    Thanks

    Joe

     

    #43960
    marysue
    Participant

    Hi Gibson19:

    I am a veteran of 25 BCG treatments and counting as I’m in my third round of bladder cancer.  I was first diagnosed in 2008, then again in 2010 and now in September 2022.  The previous two times it was high grade non-muscle invasive papillary type tumours that look like pieces of pink cauliflower.  This time it was a different kind of cancer called Carcinoma in situ or CIS for short while non-muscle invasive it is  a flat tumour that is considered very aggressive so I’m doing BCG again after 12 year hiatus.  Not fun to be sure.

    Since you have had both high and low grade cancer I would suggest pressing your uro for more information on your risk factors for progression should it keep recurring and then get into discussion about how BCG would potentially benefit you in your situation.  Low grade tumours are considered more of a nuisance than anything else but can interfere with bladder function and therefore need to be dealt with.  Many uros will take a wait and see approach with low grade tumours but low grade tumours seem to recur more often than high grade.  Many uros will recommend BCG or some other drug instilled in the bladder if the tumours keep recurring.  Since you have had high grade cancer once, it could happen again and if it does, it needs to be taken seriously because it is the type of cancer that can progress if left untreated.  Just my thoughts.  Best Wishes going forward.  (((HUGS)))

    #43968
    Gibson19
    Participant

    Thanks for taking the time Marysue. I appreciate the feedback. I will consult with the uro and my family doctor for more information.

    I hope this is the last round of treatments for you!!

     

    #43976
    Nightingale
    Keymaster

    Hi Gibson19,

    I am a 12 year survivor and when I was first diagnosed it was found to be low grade, non-muscle invasive.  My Uro recommended just cystoscopy and did not even mention BCG.  My cancer came back 3 times and if it had come back a 4th time, my Uro was then going to make me have the BCG treatment.  Thankfully, my cancer did not come back, and thankfully I did not have to have the BCG treatment.  Fingers crossed that my cancer never returns.

    Incidentally, when my cancer returned the three times, it was always low grade non-muscle invasive.

    My best,

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