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Seeking similar positive experiences

I was diagnosed with bladder cancer in what will be a year this coming October. Since that time, I had gone through 3 scopes with the camera on a quarterly basis and BCG treatments following the camera procedure. The last two times, I had no reoccurring tumors and my good news is the following: Extended the next look into my bladder to four months and no BCG treatments following my procedure yesterday. This is somewhat contradictory to what I had thought, which was up to two years of BCG and every quarter for a similar period for the cystoscopy. Believe, me, I am not complaining and very happy, but this learn as we go can be challenging at times. Similarly, I was not aware of Bladder spasms and suffered through them in a terrible manner for an unreasonable amount of time. I did not know how common they were wearing a catheter for almost three months. It was left in as I suffered a broken ankle the same time i was having these issues with my bladder. The loss of blood from the bladder cancer caused my hemoglobin's to drop to 3.5 which caused me to fall and break my ankle. Had this not happened, I probably would not be here now. Now after all that and to hear the aforementioned good news, is almost a miracle . These forums have been a god send for me to understand better what is going on with my body and why. Feed back will be much appreciated.

  1. @John S - I may be reading this incorrectly but have you had one 6 week session or BCG or more? I understand your concern with a change in what may be considered protocal. You have not stated if your cancer is high or low grade and that may be the reason for the difference. I am not a medical professional but I might suggest asking your doctor about this just to reassure you. I personally did not have BCG. I think that the continued 3 times as year scopes are normal as this is a very sneaky form of cancer and vigilance is necessary. Possibly your doctor is waiting for the results on the next scope to decide on further possible treatment - ie BCG or BCG maintenance? Just my thoughts. My best to you. Linda Urbanski ( moderator, Bladdercancer.net team member)

    1. hi. I am glad they found it, even if it took a dell to do so. I am not medically trained but know it is usually given in batches if 6 weeks. I understand here can be a number off factors to determine how many rounds you need. It can vary from person to person depending on the exact staging of the cancer among other things. I always say knowledge from the correct sources is power. I would definitely let your medical teams and doctor know your concerns. They should be able to explain more about the decision made in your case. Take care. Have a good weekend. Laura, Moderator, BladderCancer.net

      1. @John S - I am not a medically trained person but it is my understanding that BCG is only given for stage 1 bladder cancer. It may be that you will have another cysto and it will be determined if another round of BCG is in order or maybe maintenance. I hope you are able to find answers to your questions that will ease your mind. Please keep us updated on how things are going. My best Linda Urbanski ( moderator, Bladdercancer.net team member)

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