Triangle bladder cancer patients seek solace from one another

The Triangle Bladder Cancer Support Group has met for more than a year-and-a-half, providing encouragement for those diagnosed with the disease.

“It has helped to hear what others have gone through,” Ernie, who has been battling bladder cancer for more than five years, said. “You need support from someone else, and this group provides it.”

Bladder cancer is the fourth leading cancer for men, and the American Cancer Society estimates about 55,600 new cases in 2012. The rising number of bladder cancer cases means a growing number of patients, and patients’ families, coping with the disease.

“You are pretty much devastated when you hear the word cancer,” Ernie said. “I know my first reaction was shock.”

The Triangle Bladder Cancer Support Group serves as a platform for those diagnosed with the cancer, like Ernie, patients’ caregivers and their families to share their experiences with each other.

A ‘homegrown’ partnership

Liz Sherwood, coordinator for survivorship and oncology integrative medicine programs at UNC Lineberger Comprehensive Cancer Center and the N.C. Cancer Hospital, said the support group is a true partnership, “one between the folks who are interested in seeing it happen and us helping provide the space as well as some ability to get resources and help facilitate the support group.”

Sherwood said this “homegrown” group has been effective in helping patients make treatment decisions and find support under the leadership of David Langam, a bladder cancer survivor and a key organizer of the group.

“David in a big way was willing to take on the administrative responsibilities in terms of getting the word out and helping facilitate the actual group happening,” Sherwood said.

Dr. Matthew Nielson, Lineberger Center member who has helped with the development of the Triangle Bladder Cancer support group, said that Langam and the group have added depth the Lineberger Center’s support for patients.

“They have far exceeded the expectations for a fledgling support group and have a lot to be proud of,” Nielson said.

Coming together

Langham said that “for those of us who still have our bladders, it is really wonderful to be in these meetings and hear peoples experiences who’ve had theirs removed because we may be facing that.”

The Triangle Bladder Cancer Support Group’s monthly meeting, on the second Tuesday of the month, begins with a moment of silence followed by introductions, a statement of where group members are in their journey and usually ends with a speaker or group activity.

Ernie and his wife attend the meeting together as the majority of those in attendance are couples with the spouse acting as caregiver to the one diagnosed with cancer.

“Each meeting there is something different we discuss,” Ernie’s wife said. “There was one meeting where the patients were in one room and the caregivers were in another.”

The couple joined the group after seeing a brochure at a bladder cancer seminar they attended. At that time, Ernie had been receiving treatment at another facility and faced the possibility of his bladder being removed.

“I had been told previously that all my options had been excluded,” he said. “As fate would have it, the group had a meeting within a week. We were warmly received and were led to some doctors at UNC.”

‘The Encouragers’

“I first thought I don’t want to go to a support group, I don’t want to meet all these people,” his wife said, recalling her first reaction to the support group.

“But to hear what they have gone through and how they have coped—we could ask whatever questions we wanted and that was refreshing to know that there are others out there that can help you,” she said.

Five-year cancer fighter Ernie said the support group inspired him to write a poem called “The Encouragers” based on the other members’ encouragement, stories and willingness to share.

The final two stanzas of the poem sums up the importance support groups provide in this battle against cancer:

Moreover, there seemed to be a universal desire

To give encouragement to all in this cancer’s shadow

‘twas as though I was hearing a new version of

“I love to tell the story.”

We were blessed and enriched,

And encouraged by all in attendance.

This article was reported for the Reporting 253 class at UNC’s School of Journalism and Mass Communication.

  1. I am a bladder cancer survivor. I was diagnosed last year, and after two surgeries, am cancer free. My last surgery was in Sept. where they had to do a complete cystectomy on me. I now have a urostomy. Had I only paid more attention to my symptoms, instead of ignoring them over the years, I would not have reached this point. I made excuses for my symptoms, as women are more likely to do. I wish to raise awareness more so for women, because we chuck off our symptoms to child birth, and other things. Men are more likely to seek earlier treatments for symptoms than women. This needs to change. All need to seek treatment when symptoms arrive.

    Comment by hannelore on February 14, 2012 at 11:23 am