Laura, I see Dr. Mark Schoenberg at John Hopkins and I really like him. I just had a new tumor taken out in feb. we are doing a watching waiting game. i go back in May. His nurse Charlene is a sweetheart , she has helped me though some stuff not related to bc.and I will always be indebted to her . If you want you can look him up on the John hopkins home site. Rocky
Thanks. I will definitely do that. I live outside the Washington, D.C. metropolitan area and there are plenty of well-known teaching hospitals in the area. I am disheartened that the cancer keeps coming back and wonder if I shouldn't be getting some sort of chemotherapy to prevent recurrences, even though the thought of that scares me. I am glad to have found this forum and am thankful for your advice.
I think that as soon as you read this post, you should stop whatever else you are doing, and look for a Top Cancer Hospital in your area for a second opinion. Preferably with a Top Uro-oncologist. This is not just an annoying bladder infection that won't go away...this is cancer...I am sure that your Uro is a nice guy who makes you feel comfortable, but even he, if faced with this disease would ask colleagues for their second opinions...Don't just accept the status ...find out what the Top Cancer Specialists are doing to treat your cancer, whether it is superficial or more life threatening...Put a value on yourself...I know that your family considers you irreplaceable...you should treat yourself that way, and get the best medical advice you have access to.
Just My Opinion,
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.
Life isn't about how to survive the storm, but how to dance in the rain.
Low grade is better than high grade, but I think you should definitely get to a major cancer centre and have a second opinion. If you mention where you are located, lots of people on this forum know the good docs in different areas. I'm in Toronto and have seen Dr. Michael Jewett at Princess Margaret Hospital.
I was diagnosed with bladder CA in August 2007 at the age of 37. I had surgery twice to remove all tumors, which I am told are superficial, non-invasive and low-grade. I have never been given an actual "staging" of the tumor and there is not one on the pathology report that I obtained from the hospital. I recently had a follow-up cysto and there was a new growth. I have had surgery three times in the past seven months and am being treated by a urologist. My family wants me to get a second opinion. Are most people with low-grade bladder cancer treated by a urologist? My mom thinks I need to see a cancer specialist. I don't know whether to pursue it or not...
Great advice from both of you which I will surely take to heart if and when my doc recommends rc down the line. Good luck to you, Sara Anne on your BCG. Odds are you won't experience too much difficulty and that it will prove effective.