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Did you get all the information you needed?

Do you think you got all the information you needed when you were first diagnosed with bladder cancer? What information would have been helpful to have?

  1. No, I did not. Surgeon was extremely optimistic prior to removal of two small tumors, but after pathology report, not so much. I had to do a lot of independent online research after he gave me a copy of the report, and a very, very brief exchange about future treatment. No one suggested that I have a family member with me when I met with him, and I was in a state of shock as he described additional BCG treatment. He has been less than forthcoming about future prognosis, and possible success of BCG for the future. It would have been helpful if he or someone on the Urology team would explain which or both tumors could aggressively return. Also he later dismissed BCG treatment symptoms as being a result of my emotional state, suggesting that I get anxiety medication from my primary physician. At the 5th and 6th treatments, the charge nurse explained that my symptoms were similar to those experienced by many, many other patients, and were "not in my head." That was extremely helpful.

    1. Hi vistadelmar, sorry to hear how your feeling in regards to the treatment you have gone through. Apart from the way in which you are being given information. It does seem that your treatment plan is similar to many other non-invasive bladder cancer patients. It is unfortunate that we don't always have the useful bits of information that can help so much after first being diagnosed, but I'm glad you took the time out to do your research and I hope you can get the necessary support from this site. I'm disappointed your symptoms from the BCG was dismissed. I was very ill for 3 days whilst taking BCG and ended up in hospital as a result of this. I was diagnosed with T1 high grade bladder cancer and went through a couple of turbt, to remove tumours. This was followed by BCG of which I was told was successful with no cancerous cell showing after a biopsy. I am still receiving additional doses of BCG over a 3 week period, every 3 months, which is common practice, because as you've rightly pointed out tumours can return. I hope you have a better experience over the next stage of your treatment and you if you haven't done so already, maybe to consider changing your medical team or at least explaining how disappointed you felt with certain feedback. I tend to take my wife with me to certain appointments because she is never afraid to ask the difficult questions. Please keep us updated on how things are going for you and remember the community will always be here to support you - Noel, Team Member

      1. No. I wasn't even told what it was and what the prognosis should be. I research it on my own, but it wasn't confirmed for 2 years. ~Jacqueline, Moderator,

        1. @Laura Mackenzie - It may have been mentioned to be honest but as things moved along so quickly for me I may not recall that part. Either way, I am grateful to have had a surgery to rid me of cancer and move on with my life. Linda Urbanski ( moderator, team member)

        2. absolutely! Laura, Moderator,

      2. Wow, that's quite a lot to deal with, ! Thanks for sharing that experience with us! It makes an excellent point about the need to know what we are dealing with no matter how unsettling the news might be. We have the right to stress, cry, scream, rant, laugh, whatever, even as we collaborate through our treatment. ~Jacqueline, Moderator,

        1. @ Jacqueline Harmon - I of course wish I had known more but honestly have dealt with the prolapse and hernia without much problem. I think that too many doctors want to get on with treatments and forget about side effects or other complications or issues that might arise. That is the value of places like this where we can share this info with others so they can look out or prepare for possibilities that we may not have known about during our treatment. It definitely takes a village. Linda Urbanski ( moderator, team member)

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