Non-muscle-invasive, low grade bladder cancer

My name is Allison Smith and I reside in lovely Savannah, Georgia after too many winters in upstate New York. I was 52 years old when I was diagnosed witfh bladder cancer in February, 2004. This came at an especially difficult time as my only sibling, my brother LLoyd, was diagnosed with multiple myeloma six weeks prior. All things considered, I’ll take the bladder cancer.

My diagnosis came after being treated three times over a period of 18 months for a urinary tract infection. When I finally referred myself to a urologist, the first words out of his mouth were "We have to rule out bladder cancer". Much to my shock, that indeed was the diagnosis after a CT Scan three weeks later.
Given my insistence that my brother find the best possible doctor, I heeded my own advice. Two days after learning I had bladder cancer, I had my first appointment at Memorial Sloan Kettering Cancer Center in New York City. I felt blessed to have such an excellent facility 3 hours from my home and even now that I live in Georgia, I continue going there. I feel equally blessed to have an insurance plan that permits me to get treatment anywhere I choose.

For me, my bladder cancer experience thus far has been remarkably easy. I know I am very fortunate. Despite the fact that my tumor had been growing for many years, it was a low grade, non-muscle-invasive tumor. Dr. Donat, who is my urologist and performed my surgery at MSK, said I had the best possible outcome. I initially went every three months for cystoscopes, which are not at all painful for me. I had three recurrences of the cancer, which is very common. Dr. Donat was able to remove these little "nuisance tumors" by burning them off during the cystoscope. In March of 2005, she injected mitomycin-C in to my bladder which I tolerated just fine. It is now nearly three years later and I have been cancer free since the one installation of mitomycin. And I have now graduated to check-ups every six months.

Because I “got off easy”, I felt compelled to lend my energy and enthusiasm to others. I am the national volunteer coordinator for the Bladder Cancer Advocacy Network ( and head the Volunteer Leadership Team. Our goal is to generate increased awareness of bladder cancer among the medical community as well as general public. I have been a volunteer at Gilda’s Club, a nurturing environment for anyone affected by cancer. If you have a clubhouse in your area, please check it out. I have also gone public with my bladder cancer story, appearing on the local news, and sending hundreds of letters to local family and OB/GYN practices to generate more awareness. I know we can make a difference!

My advice for anyone with low grade bladder cancer, especially those of you who are newly diagnosed, is to find a doctor you trust and try not to worry too much. Take care of your health which means if you smoke, please stop. Eat a better diet. One of the first things I read when I was initially diagnosed is that no one dies from non-muscle-invasive bladder cancer. And the chances of tumors progressing from low to high grade are minimal, something like 7%. So stay positive. You’ll beat this!

Please feel free to contact me if I can be of help to any of you. My email address is

Warmest Regards,
Allison Smith