Bladder Cancer
Interview with BCAN Founder & Caregiver
Make the most of every day: A chat with Diane Zipursky Quale
Diane Zipursky Quale is the co-founder of the Bladder Cancer Advocacy Network (BCAN.org), the first national patient advocacy organization dedicated to increasing public awareness about bladder cancer, advancing bladder cancer research, and providing educational and support services for the bladder cancer community. Diane and her late husband, John Quale, launched BCAN in May 2005. As BCAN approaches its 20th anniversary, Diane sat down with Patient Resource.
When I share our story, I always emphasize that John’s bladder cancer diagnosis was not common. John’s disease was high grade and aggressive from the start. What we went through will not be everyone’s story. It’s ours alone, but I talk about it with the hope that our experience will help make yours a little easier.
John was diagnosed in 2000 at age 53. We knew absolutely nothing about bladder cancer. In fact, at first, we thought it was kidney cancer because when the first tumor was found, we were told he needed to have his kidney removed. After doing some research and getting a second opinion at a major cancer enter, we moved forward with having John’s kidney removed laparoscopically. His surgeon said “we got it all” and we hoped we were done with treatment. John moved to a quarterly follow-up schedule, and we did no further research.
The first follow-up scan was clear. But as we soon learned, bladder cancer tends to recur. The next scan showed multiple tumors in John’s bladder. We began seeing an experienced urologic oncologist who focused on bladder cancer. When test results showed the cancer had already metastasized to John’s liver, he referred us to a medical oncologist who we trusted immediately. He was honest but hopeful. He told John, “I can’t cure you, but I can treat you.” His goal was to extend John’s life, and he did, until the metastasis returned and John died in 2008.
Those eight years were some of the hardest, as John had several recurrences of tumors in his bladder, requiring a variety of different treatments, which at that time were not plentiful, due to the lack of research and advancements in bladder cancer. But during that time, we focused on living our life to the fullest. We traveled, we celebrated birthdays and anniversaries, as well as the birth of John’s first grandson. We educated ourselves about bladder cancer, and John continued to practice law. We both participated in a cancer support program that emphasized learning to live well with cancer, and it was transformational. I took a step back from my law practice to stay home with our children and figure out how to make myself feel whole.
I became involved in cancer advocacy and was shocked at the lack of research and awareness for bladder cancer. It was so common, yet it didn’t get the attention or funding that other cancers did. Finally, in 2005, I’d had enough. I was angry and felt compelled to do something about it.
I asked John what he thought about starting an advocacy group. Our goals would be to fundraise for research dollars, raise awareness, and create a community so people with bladder cancer and their caregivers would never feel alone. John was all for it, but he made it clear that it would not be his primary focus. He didn’t want cancer to be his identity. He would be behind it 100 percent, but he would still practice law.
We maintained a close relationship with the urologic oncologist at John’s cancer center, and I reached out for his input. He told us we absolutely had to do it, and he was instrumental in quickly bringing together other physicians who focused on bladder cancer. Without hesitation, they volunteered to sit on our Scientific Advisory Board. In May 2005, BCAN (pronounced “beacon”) was launched, and I felt very hopeful about turning our experiences into something positive.
From the beginning, BCAN recognized the importance of creating a community for survivors, caregivers and their families. We launched a website that helped us connect people from all around the country. Our Survivor to Survivor program (which includes caregivers) encourages the sharing of important and practical information that you don’t get from doctors and nurses because they don’t have that perspective.
I still remember the best advice we were given by a friend we met through BCAN who later died from the disease. She had her bladder removed just a year before John’s surgery. She insisted John get a La-Z-Boy recliner to use after his bladder removal surgery. He balked at the idea until he practically lived in one in his hospital room. The day before he was discharged, he told me we had to get one of those at home! A good friend made it happen, and that recliner made his recovery much more comfortable.
Support from the bladder cancer community is just as valuable for caregivers. You’re going through everything your loved one is except the physical impact of the disease and treatments. You feel the fear, the anxiety, and all the ups and downs. Don’t underestimate the impact that has on your life. Don’t be afraid to get mental health therapy or ask for support. Try to focus on each day because that is all any of us are guaranteed. It doesn’t help to think about what may happen tomorrow.
John and I never let the cancer define us. Each day was filled with love. We learned how to live a full life despite cancer until the very end of his illness. We moved into a new home just a week before he died, and spent our days with close family and friends. He was an amazing husband, father, friend and lawyer.
From One Caregiver to Another:
- Take care of yourself physically and emotionally. You can’t take care of your loved one if you don’t take care of yourself.
- Ask for help, and take the help that people want to give you. Your friends and family are suffering too, and by accepting their help, you’re also helping them.
- Remember to breathe.
