Bladder cancer survivor starts group to support others

Alan Roecks is anything but shy. Even when it comes to talking about bladders, urine and ostomies – the surgical opening in the body for discharging solid and liquid waste into a pouch – he is upfront and open.

This Spokane bladder cancer survivor who had his bladder and prostate removed last fall after 20 months of BCG (aggressive intravesical immunotherapy) treatments is driven in his efforts to help and educate others with similar conditions and struggles.

Roecks, 68, is the rare type of patient who keeps journals and makes color-coded charts to monitor his health, and reads medical studies and articles like some people read the sports section. He isn’t afraid to make suggestions to his doctors and surgeons, even recommending combining two drugs that made his treatment more tolerable.

Yet he knows not all people are so aggressive and willing to self-educate. He’s been scared and unsure what to do himself, especially now that he has an ostomy bag that still sometimes leaks. That is why Roecks, along with his wife, Jane, a Stephen Minister for the Lutheran Church – meaning she’s a layperson trained to give one-on-one support – has created a bladder cancer support group in the region for patients, caregivers and family members. Just this month, Spokane urologists received brochures for the new Inland Northwest Bladder Cancer Support Group.

Bladder cancer is the nation’s sixth most common cancer with more than 73,000 new cases and about 15,000 deaths each year, according to the Bladder Cancer Advocacy Network. It is most common in men. The most common symptom is blood in the urine, but it can be light and infrequent with no pain. Other symptoms include irritation when urinating, urgency, and frequency of urination.

“Urologists are like mechanics,” said Roecks. “They aren’t interested in the touchy-feely. And the bladder is an area people don’t want to talk about. It’s taboo.”

He added that bladder cancer patients, especially men, are often in denial and isolate. This makes it difficult for their spouses and caregivers, often the people who are in search of support and understanding.

Now bladder cancer patients in Eastern Washington and North Idaho and their caregivers have a safe place to talk, to ask, to share.

The support group isn’t a group yet. In the initial stages, Roecks has created an informational brochure for doctors to give to patients. Right now, there aren’t actual group meetings. Roecks will just help connect the person with other bladder cancer patients and survivors. Eventually, when the need grows, he envisions monthly meetings similar to the Spokane Ostomy Group, which is for people who have had their bladder removed but not necessarily due to bladder cancer. It’s estimated only 15 percent of people with bladder cancer have their bladders removed.

“I think any support group is great,” said Ann Gannon, director of Spokane Urology, the practice where Roecks’ surgeon works.

Gannon has agreed to ensure bladder cancer patients get the brochure that Roecks wrote and a fact sheet for newly diagnosed patients written by the Bladder Cancer Advocacy Network, a national awareness group.

Susie Weller is the co-facilitator for the Spokane Ostomy Group, and she is glad to see more resources and public education on ostomy.

“My hope is that whatever Alan does, we will coordinate with him to support our mutual goals,” she wrote in an email. “We are getting more referrals from urologists and oncologists for their patients to attend support meetings. Ideally, patients would receive as much information and resources as possible to support their individual needs.”

Roecks searched for resources and information when he was first diagnosed, connecting with local bladder cancer patients. Still, he yearned to talk with someone who had the painful BCG treatments – treatments that are often discontinued because patients can’t tolerate the side effects. He found some support on the Internet. As a former counselor who also had a kidney removed in 2013 after a kidney cancer diagnosis, he knew more help for people was needed. He remembered feeling confused and unsure when his own father was diagnosed with bladder cancer and eventually died in 1992.

“People get the ‘deer-in-the-headlight’ and don’t understand, don’t know what to do,” he said. “So many people don’t ask questions. But they need to reach out to people. There is hope. The more questions you ask the doctor, the better off you are.”

Roecks said he already demonstrated this theory with a bladder cancer patient he met in his water exercise class. The clinic she was using didn’t offer BCG treatments, so he encouraged her to seek another opinion. She did, and now is receiving BCG treatments. She’s one of the bladder cancer patients who will be offering an ear to others, Roecks said.

Roecks grew up in Fairfield and graduated from Liberty High School. After earning a doctorate in educational psychology and working in several fields including counseling and education testing, he took a job with the U.S. Department of State. As a foreign service officer he worked in the Congo and other countries for years. He even had a private audience with Mother Teresa. That’s why he and his wife decided they needed to do more to help others.

Now he’s trying to remove the focus from his own illness and struggles by helping others. He’s recovering well and back to his active life of swimming and tennis all while trying to cope with his new ostomy pouch.

“I’m trying to figure out how to get on with my life,” he said.