Jared Kaltwasser

In some ways, Jacqueline Richard Nalls was the healthiest she’d ever been. Nearing age 50 and a smoker for more than three decades, she finally decided to make a change.

“I had borderline high blood pressure because of my weight, so I decided to take on a new exercise regimen, new eating habits and all that stuff,” says Nalls, a lifelong resident of the Chicago area. She lost 40 pounds.

“But as I was losing weight and getting more fit, I was having some lower back pain,” she says. Originally her doctor thought it might be arthritis in her spine. She was given a prescription pain medication, but the pain kept getting worse.

As a young woman, Nalls had had endometriosis, and her OB-GYN had been monitoring a uterine polyp. So when nothing else seemed to work, Nalls made an appointment with her OB-GYN. An ultrasound revealed a mass in her bladder.

“Never did I really think it would be a possibility,” Nalls says.

In her early post-diagnosis days, Nalls spent a lot of time researching bladder cancer. She found out that smoking is the number one cause of bladder cancer. That news that helped her quit cold turkey. She also found out that she wasn’t alone. In fact, she was far from it. Bladder cancer is the

“It is a common cancer, but if you ask 100 people, nobody will know anything about it,” says Gary D. Steinberg, MD, a professor and the director of Urologic Oncology at the University of Chicago Medical Center. That’s an issue the 

 (BCAN) has been working on since its founding in 2005. The Maryland-based organization funds bladder cancer research and patient education campaigns, in addition to providing patient support and holding an annual fundraising walk.

“One of our main goals is just to make people more aware that this is a very serious disease,” says Gerald McNamara, BCAN’s chairman and a 

bladder cancer survivor himself. “There are services that survivors and people recently diagnosed can avail themselves of.”

McNamara said one reason for the low public awareness is that the cancer affects an area of the body people don’t usually like to talk about.

“It’s the bladder—people maybe are not comfortable talking about it,” he says. “There are incontinence issues associated with it that might make people uncomfortable. Unlike some of the other cancers that might strike people when they’re young, bladder cancer has traditionally been a disease of the very elderly.” In fact, Steinberg said the average age for a bladder cancer diagnosis is 73. However, as Nalls and McNamara demonstrate, some bladder cancer patients are much younger.

McNamara was 55 when he occasionally started to notice blood in his urine.

“Typically it would occur after a round of intense exercise—jogging, stuff like that&mdash;and I would pee blood for maybe five seconds and it’s hard not to notice that,” McNamara says. “I finally went to my doctor, who sent me to a urologist, who did a series of tests and diagnosed that I had a tumor in my bladder.” McNamara being referred to a urologist is an important point. Steinberg said many warning signs of bladder cancer aren’t initially treated seriously.

“What happens all too often is a patient in their 70s will have blood in their urine, call a doctor, and be told, ‘here’s an antibiotic,’” Steinberg says.

If the blood is due to a bladder infection, the drug will likely resolve the matter. But if the blood is due to bladder cancer, it will persist. Meanwhile, the patient will go months without proper treatment. “All too often, there is a significant delay in just the recognition that maybe it’s not an infection,” Steinberg says.

In addition to funding more research, McNamara said BCAN is also focused on reaching out to physicians to ensure they’re up-to-date and on the lookout for potential bladder cancer patients.

Steinberg, meanwhile, says he advises bladder cancer patients to immediately get in touch with BCAN, which publishes multiple resources, including a booklet for newly diagnosed patients. The information can help patients make tough decisions that often must be made quickly.

For those with advanced bladder cancer, removal of the bladder may be the best option.

In an increasing number of cases, surgeons can reconstruct the urinary tract using the small intestine. Steinberg performed the neobladder reconstruction procedure on Nalls. Though she began exercising before her diagnosis, Nalls says she feels blessed and grateful that she changed her lifestyle when she did.

“Had I been 50 pounds overweight and with borderline high blood pressure, I might not have been a good candidate for that neobladder,” she says. “And that would have changed everything.”

Articles

Bladder Cancer Advocacy Network Shines Spotlight on Common, But Unknown Killer

Lee Tomlinson was familiar with the Cancer Support Community (CSC) long before he was diagnosed with throat cancer.

“Honestly, I’d heard of Gilda’s Club,” he says, referring to the CSC affiliate. “It’s because I work a lot in the entertainment industry. So I heard of that and I knew it had something to do with cancer, but I’d never had any cancer experience, so I never paid much attention to it.”

 is a global network of cancer support programs based in Washington D.C. The organization is the result of a 2009 merger between The Wellness Community (TWC), a support network for cancer patients founded in 1982, and Gilda’s Club, which was modeled after TWC and created in 1991 to honor Gilda Radner, the "Saturday Night Live" star who died of ovarian cancer in 1989.

Today, the Cancer Support Community not only provides direct support for patients, survivors and caregivers, but it also funds research and policy advocacy.

Though Tomlinson had heard of the nonprofit, it wasn’t top of mind in 2012 when doctors told him he had advanced stage 3 throat cancer. The news was a shock. He never smoked or drank — two habits linked to throat cancer.

The diagnosis came with hard realities and choices. First among them: the question of whether to use a feeding tube.

“In the massive understatement that oncologists tend to use, (my oncologists) said it’s going to be ‘somewhat painful’ for you to swallow,” he says.

But Tomlinson was a former pro athlete, mountain climber and marathon runner. He wasn’t afraid of “somewhat painful.”

 get feeding tubes?’ And they mentioned a SWAT team member and a pro racecar driver as the only two people in all of their lives who had not gotten a feeding tube,” he says. “So I said I don’t need it.”

That decision would soon expose Tomlinson to excruciating pain.

“I couldn’t swallow saliva,” he says. “It was like swallowing broken glass.”

He couldn’t eat, lost 60 pounds, and found himself with a damaged immune system and the constant threat of infections.

Now cancer-free, Tomlinson says that decision was one of two things he wishes he could do over again. The other? He wishes he’d gone to Gilda’s Club and Cancer Support Community sooner.

“Again, male ego taught me to be the provider, taught me to be the tough guy above it all,” he says. “So I resisted not only the possibility of help for an organization, the CSC, but also help from my friends. I completely isolated myself, embarrassed and ashamed that it was killing me and I couldn’t admit that as a man.”

It wasn’t until near the end of his treatment when a friend, who was also going through cancer at the same time, mentioned CSC in a casual conversation.

Tomlinson took his friend’s advice and went. He quickly became not only an active participant, but a vocal advocate for the group.

“There is no question whatsoever that compassionate, caring, kind, thoughtful interactions between people dramatically and measurably impact the speed with which one heals, the likelihood of one healing and increases the will to live, which is critical in life-threatening diseases,” he says.

Tomlinson said the CSC is also a crucial resource for survivors, helping with everything from emotional support to financial advice. He also encourages physicians to make their patients aware of support groups, and the critical role they play.

“If you can’t get the word out by the medical providers, it’s a real uphill battle,” he says.

During his battle with throat cancer, Lee Tomlinson says he wishes he went to the Cancer Support Community earlier.

Cancer Support Community: Interactions Can Make All the Difference

The term “colonoscopy” has become something of a synonym for an uncomfortable experience a person wishes to avoid. Yet the procedure was a breakthrough for public health, giving doctors an unmatched tool for the early detection and even prevention of colorectal cancer.

Unfortunately, the benefits of a colonoscopy often aren’t enough to overcome the skittishness of many patients. It’s a problem that has plagued advocacy groups and physicians for many years.

Luckily, there’s another way. Virtual colonoscopies, also known as CT colonography, allow for colorectal cancer screening without the need for an uncomfortable procedure under anesthesia.

“It’s a simple radiological procedure,” said Carolyn Aldigé, president and founder of the 

. “It visualizes the colon through a radiological procedure as opposed to having to use an invasive optical imaging procedure.”

That’s because Medicare, the health insurance program that covers 49 million Americans, doesn’t cover CT colonography. This is despite the fact that several major insurers already cover it, and 20 states require insurers to do so. In terms of cancer prevention, it’s low-hanging fruit, Aldigé said.

“It’s one of the few screening tests that actually can identify pre-cancer,” Aldigé said.

The Prevent Cancer Foundation and a handful of other colorectal cancer care advocacy groups have joined with the American College of Radiology to back federal legislation that would require Medicare to cover the procedure. The legislation was introduced last month and referred to the House Ways and Means Committee.

The fight for greater access to colorectal cancer screenings is indicative of the work PCF has been doing since its founding in 1985. While many advocacy groups concentrate their efforts on raising awareness or finding a cure for cancer, PCF has always had its focus squarely on prevention and patient education.

Thinking back to the early days, Aldigé said she chose that focus in part because it was a neglected area.

“Nobody else was doing it,” she said. “…When I started the foundation 30 years ago, I wasn’t interested in doing what everybody else was doing.”

Since then, tremendous strides have been made in understanding and detecting the disease. In addition to advances in colorectal cancer screening, researchers have also made major strides in the detection and treatment of lung cancer and breast cancer, and developed a vaccine against HPV, among other advances. PCF has helped fund research, education, and advocacy efforts, to the tune of more than $130 million to date.

Still, as the virtual colonoscopy issue illustrates, the challenge isn’t just about advancing the science. It’s also about improving access. Aldigé notes that Washington,

DC has the highest breast cancer mortality rate in the country.

“That’s largely attributable to late diagnosis,” she said. “Which is attributable to the fact that women are not following screening guidelines. It’s an access issue.”

On the prevention side, Aldigé said scientists are learning more and more about the role of exercise, nutrition, and the immune system in cancer prevention.

“We’ve made amazing progress,” she said. But she knows there’s more work to be done.

To learn more about volunteering and other ways to get involved, 

visit the Advocacy section of PCF’s website

While many advocacy groups concentrate their efforts on raising awareness or finding a cure for cancer, PCF has always had its focus squarely on prevention and patient education.

Jared Kaltwasser

Bladder Cancer Advocacy Network Shines Spotlight on Common, But Unknown Killer

Cancer Support Community: Interactions Can Make All the Difference

Prevent Cancer Foundation Aims to Stop Cancer Before It Starts

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