Leading the Way to Bladder Cancer Awareness

by Veronica Tompkins
(a previous version of this article was first published in the Waynesville, NC newspaper, The Mountaineer)

North Carolina picnic attendees

Twenty something years ago Linda Patton of Waynesville was diagnosed with bladder cancer and at the young age of 46 underwent a procedure to remove her bladder. Throughout the years, Linda had never met another person who had this type of surgery. She faced her journey with bladder cancer alone until this past July.

Fast forward to Saturday, July 18. That is when a group of almost 40 bladder cancer survivors and their spouses gathered to picnic on a ridge of the Smoky Mountains in order to meet each other for the first time face-to-face – myself and my husband included. The survivors came from all over – Florida, Georgia, Illinois, Ohio, Nevada, New Jersey – just to name a few of our home states. Some had a shorter drive, as they lived in North Carolina.

So you may be wondering how most of us found each other. As each of us learned of our diagnosis, we ventured online for answers to our questions. Somehow during our Internet searches, many of us ended up at the Bladder Cancer Advocacy Network site (www.bcan.org) and their online support community (click on the orange button on the left to get to the support community).

What we found was more than just information – we found a community of others with bladder cancer and their caregivers who understand what we’re going through. We found a source of strength – a never-ending supply of encouragement. But most importantly, we found a safe haven where we could discuss and ask personal questions about our condition and our bodies. Someone online said it best when they called us “intimate strangers.” Bladder cancer discussions are about as intimate as it can get. Many of us chat online daily and not just about our condition. Although we are separated by distance – we are united in experience and our goal to be cancer free.

Some locals found out about the picnic through media coverage. Nancy Parrish, of Waynesville, one of the key organizers of the event, wrote a letter to the editor of her local paper that caught the eye of Linda Patton. Nancy then invited Linda to join her for a story on Channel 13 news in Asheville. It was through these efforts that other bladder cancer survivors in the area discovered our group, including an 82 year-old woman from Canton. All in all – four additional survivors joined the picnic because of the coverage in the press.

With the exception of the recent local coverage, the “unmentionable” nature of bladder cancer has limited press and public awareness of this life-changing disease. This was also the case with colon cancer prior to Katie Couric taking a lead in honor of her husband, Jay Monohan, and his courageous battle. As it says on the BCAN site, “Despite the fact that bladder cancer is the fifth most commonly diagnosed cancer in the U.S., it has been treated like the ‘elephant in the room,’ the disease no one wants to talk about in public.” It is time that bladder cancer becomes “mentionable” in the press as it affects so many people.

It is estimated that over 70,000 new cases will be diagnosed this year and over 14,000 people will lose their lives to this disease. That’s why Diane Zipursky Quale and her late husband, John Quale founded BCAN – to give a voice to those who fight bladder cancer. Awareness is key to increase federal funding for research devoted to the diagnosis, treatment and cure of bladder cancer. Although John died of metastatic bladder cancer in June 2008, it is important that his mission continue to live through those of us in the BCAN community he started.

No matter what treatment choices we make, or what urinary diversions we choose to replace our bladders, members of BCAN’s online community share one common goal – to be cancer-free. As I write this I am just two days away from my radical cystectomy – the surgical procedure to remove my bladder. At age 47 I am younger than most of my bladder cancer peers who have undergone this procedure. Nevertheless, I am grateful for the experience of all those who have gone before me on this journey and the amazing friendships I have formed in just six weeks of being part of this life-giving community.

Veronica is pictured on the left, with other
picnic attendees.

When I met Linda Patton this weekend, the bladder cancer warrior who had her bladder removed over twenty years ago when she was my age, I got a personal dose of hope that there is life after radical cystectomy. As my husband and I mingled with others at the picnic, I was blessed by the encouragement and support of everyone gathered. As we joined hands in a prayer circle to pray for both those present and those who could not make it to the event, our spirits were lifted in unity. As the picnic in the Smoky Mountains’ breathtaking landscape came to an end, it was clear that we were living proof of the tagline for BCAN – “Together We’re Better.” Yes – together we are better and together we will continue to raise our voices until a cure for bladder cancer is found.

Veronica Tompkins is a 47 year-old mother of three who was diagnosed with bladder cancer in 2004, three years after being misdiagnosed with other conditions. She is now fully recovered from her July 22nd radical cystectomy and is partnering with her new found friends at BCAN to coordinate a Bladder Cancer Awareness Day in July 2010. Veronica is volunteering to raise public awareness of the symptoms of bladder cancer so that others can be diagnosed and treated early. She also works to get the word out about BCAN and its online community so that those with bladder cancer will not face their journey alone.