Supporting Bladder Cancer Patients, Caregivers, Healthcare Providers, and the Public
The North Carolina Triangle Chapter of the Bladder Cancer Advocacy Network (BCAN) provides vital information and support to patients, caregivers, health care providers, and the public. It also raises awareness through outreach programs and advanced research through collaboration and fundraising. Mary Weinstein Dunn, MSN, RN, OCN, NP-C, is a local chapter member, secretary and helps organize the annual Walk to End Bladder Cancer.
For additional insight on BCAN, I recently asked Mary the following questions:
Can you tell us about your mission and who benefits from your organization?
Our mission aims to help educate and support patients with bladder cancer and their caregivers and provide awareness to the public about all facets of bladder cancer- from symptoms, diagnosis, treatment, post-treatment survivorship, and resources. In addition, we partner with the national BCAN organization and local healthcare providers to promote research opportunities. While our chapter represents the Triangle area, bladder cancer patients from across North Carolina can benefit from our organization, given our variety of outreach programs.
Would you please tell me about what problem BCAN solves?
I think a problem that our local chapter solves is filling in the gaps that have existed in the community regarding direct and unique support for bladder cancer patients outside of the context of a support group. Given our connection with national BCAN and in line with our mission, our fundraising efforts help start programs that directly impact patients and their families. Before our chapter formed, I don’t think there was a local resource focused on fundraising (and channeling that money back into the community) dedicated to these patients and their families.
Please tell us what your chapter does in the community to bring awareness of bladder cancer.
Since 2013, there has been an annual Walk to End Bladder Cancer. The inaugural event was held in Hillsborough, where it continued for several years until relocating to Chapel Hill. Each year, the event has grown, and we have added a 5k component for a few years. The visibility of this event helps bring attention to bladder cancer; you can’t miss us in our bright orange T-shirts! Local volunteers organize the Walk with support from the staff at BCAN. In 2015, the chapter started to host an annual golf tournament, Tee Up FORE BCAN. The inaugural event was at Hillandale Golf Course in Durham and is now held at Governor’s Club in Chapel Hill. To date, this event has raised nearly $100,000. The money is used to help support other community outreach, patient and caregiver initiatives, and support for health care providers during the COVID-19 pandemic. In addition to community events that help with fundraising efforts, we have participated in over 30 community health fairs since 2016. At these fairs, we set up a table with written materials about bladder cancer, branded items for participants to take home (e.g., reusable straws, stress balls, pens, etc.), and have volunteers available to answer questions about bladder cancer and our organization. One of our chapter members, Paula Sloan, has been essential in spearheading our participation in these events.
Why was this network needed?
Our chapter was needed to offer direct support to patients with bladder cancer, their caregivers, and the health care teams who work tirelessly to provide direct patient care and conduct research. As a local organization, we have direct access to the teams at UNC and can talk to them about the needs of their patients and get ideas for different ways that we can put our resources to use. Given the two major academic medical centers in our area, UNC and Duke, we can reach a lot of patients who may not have had access to information about bladder cancer until they were diagnosed.
How common is Bladder cancer, and who is most affected?
Bladder cancer is more common than many people may realize. It is the sixth most common cancer in the U.S. Men are 3-4 times more likely than women to be diagnosed with bladder cancer. However, women may be diagnosed at more advanced stages. The average age of a person diagnosed with bladder cancer is 73. Caucasians have a higher incidence of bladder cancer than other races or ethnicities.
How does your network help those who’ve been diagnosed with bladder cancer find resources and services?
When we connect with patients, one of the first things we do is make sure they know about the local Triangle Bladder Cancer Support Group. The support group is not associated with BCAN or any medical center and is run by patients and caregivers. We believe getting people connected with the support group provides a different resource than what the chapter offers, which is a direct connection with people who are going through or have gone through similar situations. In addition, we inform people about our outreach initiatives, invite them to volunteer with us and make sure they know about the resources that national BCAN offers.
Is the information provided tailored to the need?
Yes. It’s important to meet people where they are and not bombard or overwhelm them with information that they either don’t want or are not in a place to receive. We try to be mindful of each person’s specific task and how they would like to receive information (e.g., written, phone call, zoom meeting, etc.)
In reviewing your website, I learned that Firefighters are at a higher risk. Can you tell us a little more about why that is?
The exact cause is not known, but it is believed to be related to carcinogens in fires as well as other things they may be exposed to in their work environments. Smoke from fires and chemical fumes are absorbed through the body and transferred to the blood, filtered by the kidneys, and released through the urine. High concentrations of chemicals in the urine can harm the bladder lining and increase a firefighter’s risk of developing bladder cancer.
How do you market your program to bring awareness?
We utilize different marketing platforms to reach as many people as possible to increase visibility about bladder cancer and our group. We have three social media accounts-Facebook, Twitter, and Instagram- where we regularly publish original content as well as repost content from national BCAN. To reach people who may not have access to social media, our information is on the main BCAN website. It is included on Survivorship Care Plans patients receive upon completing their treatment at UNC. In addition, we use posters, flyers, and leaflets for advertising our fundraising events.
Do you share information about the latest clinical trials?
We share posts from national BCAN about the latest in clinical trials and research, which includes links to webpages, webinars, and podcasts.
How could someone find out more about your network?
We would love for people to follow and engage with us on social media! That information is below. We also have a website that national BCAN updates periodically.
- Twitter: @BCAN_NCT
- Instagram: bcan_nct
- Facebook: NC Triangle Chapter of the Bladder Cancer Advocacy Network
- Website: bcan.org/chapters/bcan-nc-triangle-chapter/
Is there anything the public should know about how to reduce one’s risk of bladder cancer?
The greatest risk factor for developing bladder cancer is cigarette smoking. At least half of all bladder cancers are caused by smoking. The best thing to do is to work toward smoking cessation. There are resources on BCAN’s website. People can also ask their health care providers about resources that may be the most helpful to tailor to their individual needs.
What else do you want to share that I haven’t asked you?
- The number one sign of bladder cancer is blood in the urine (hematuria). If people see blood in their urine, they need to see their health care provider for an evaluation.
- I would like to highlight some of our initiatives (aside from the walk, golf, and health fairs)
- Patient Assistance Fund: Provides a $500 Vida Gift Card to patients with bladder cancer who may need extra financial support. The pilot program included ten patients. The only requirements are that of a bladder cancer diagnosis. No proof of income or any other tedious paperwork is required. The patient’s team identifies them and sends me a note. I then put together a packet that includes the gift card, note from me, BCAN mask, and a list of suggestions to use the money toward anything that would make their experience easier). Patients may be actively undergoing treatment or in post-treatment surveillance.
- Patient and Family Hospital Stay Grant: We donate money to the SECU House to cover the costs for patients with bladder cancer. To date, we have donated $8,000
- Non-muscle invasive bladder cancer stipend: $25 gift cards to patients who are starting treatment (medicine into the bladder) for NMIBC
- HUG program (Helping Unite Grievers): Provides soft teddy bears and a keychain with the support group mantra to members of the support group who are grieving
- Provider Appreciation Tokens: Gifts for health care workers who care for bladder cancer patients. Examples include pastries, candles from Usu Candle Company, Good JuJu Healthcare Workers Appreciation Set; coffee machine for staff at UNC Urology Eastowne; and BCAN masks.
- Financial support for Bladder Cancer Patients and Caregiver Mountain Retreat
Thank you, Mary, for sharing this valuable information about the Bladder Cancer Advocacy Network and for all the critical work the network is doing to bring more awareness to bladder cancer.
Please be sure to tune in for Mary’s upcoming professional lecture on December 8, 2021, on testicular cancer. For more information, please visit https://unclineberger.org/unclcn/