We thought my husband Ahmad’s bladder cancer was well under control after the original diagnosis of low grade Stage Ta, in 2011. He had several TURBTs, a partial cystectomy, and cystoscopies every three months. Dealing with the Stage Ta diagnosis, was relatively easy. We feared the fact that it was cancer but the TURBTs and partial cystectomy were easily tolerated.
Our lives were turned upside down overnight when a Stage IV diagnosis came two years later. It was a very challenging 11 months from that point until Ahmad’s death.
BCAN was a crucial resource for us to learn about the disease and treatments. I have participated in the walks and will continue to do so as well as help in other ways that I can. I had the wonderful fortune of meeting founder Diane Quale and getting to know the staff and I am so grateful and appreciative for what they have created via BCAN.
My life changed because I became more active as a bladder cancer patient advocate and a writer. I was very luck to remarry recently to someone I’ve known a long time who had lost his wife to serious illness, too. We both continue to work as patient advocates. I was shocked and taken aback at how few treatment options there were for Stage IV disease. We hear so much about advances in cancer today, but in 2013 that was not the case for bladder cancer. I’m very glad there are now new immunotherapy drug options, but there is much more to be done. My focus is on helping those with the worst-case-scenario situations like what I experienced.
My advice to patients and families would be to take everything seriously but try not to worry too much. Learn about bladder cancer in general and your specific type and stage of it. Get multiple opinions from specialists, and be vigilant in paying attention and following up. But most of all recognize that whether we are living with a cancer diagnosis or not, none of us knows how much time we have left. So try your best to enjoy your life.