Anne: I think my biggest benefit was from my initial surgeon who said, “I cannot bring you back into surgery until you get a second opinion.” I intended to get a second opinion and go right back to my first surgeon to get my surgery done. But that having that second opinion changed the whole direction of my treatment and my care. It probably was what saved me. The care I received was only available at Johns Hopkins at the time. Getting that guidance from the medical community and being told by your surgeon “do not look at statistics that don’t apply to you. Don’t look at the media, and don’t read those stories. They don’t apply to you,” was also helpful. Every time I went on the internet it seemed like I’m going to die. I think the medical community had a big impact and I think we need to listen to them instead of trying to troubleshoot it on the internet.
Karen: For me going to a National Cancer Institutes designated center was the game changer for me. I believe that that’s why I still have my bladder today. There was so much expertise there. There was a team. When I was at my community urologist, he was quite honest with me and said, you know, we don’t really see much bladder cancer here in our practice. I guess that would have been the only thing that I would have liked to have seen him recognize that he did not have the expertise to really treat me in the best way that I could have been referred to an expert much earlier.
The other piece that I would say that fell short, was getting information from my doctors. I did not and maybe because they thought I was a nurse I knew these things, or I had ways to get access to the support services and the resources of BCAN. No one offered me any written information, either from BCAN or any of the doctors’ practices that I visited. Again, that was a little while ago, but hopefully that’s changed now.