How the Bladder Cancer Advocacy Network INSPIRES Hope
Receiving a bladder cancer diagnosis can feel scary and isolating. Luckily, organizations like the Bladder Cancer Advocacy Network (BCAN) exist to inform and support patients, families, and caregivers through education, resources, and community connections from diagnosis onwards.
Understanding Bladder Cancer
Bladder cancer begins when healthy bladder cells develop genetic mutations that cause uncontrolled growth. As more abnormal cells form into tumors, they can invade the bladder wall muscle and potentially spread to other organs.
Bladder cancer symptoms include:
- Blood in urine
- Frequent urination
- Painful urination
- Back or abdominal pain
- Fatigue
Doctors use imaging tests, cystoscopy procedures, and biomarker urine tests to diagnose bladder cancer. Treatment options range from immunotherapy medications, chemotherapy, radiation, surgery to remove tumors, or combinational approaches.
BCAN's Mission of Support
Founded in 2005, the Bladder Cancer Advocacy Network provides services that:
- INFORM: Raise awareness and share educational materials about bladder cancer.
- SUPPORT: Connect patients and families to form a caring community.
- INSPIRE: Drive collaborative research and clinical trials for new treatments.
- PROMOTE: Advocate for government funding and updated care policies.
BCAN Support Programs
Whether newly diagnosed, in treatment, or in remission, BCAN offers the following valuable support programs:
Bladder Cancer Basics Video Series
These brief educational videos explain bladder cancer fundamentals, testing procedures, treatment options, latest research, life impacts, and caregiver tips.
Buddy Program
This peer mentorship initiative matches bladder cancer patients 1-on-1 with volunteers who have undergone similar experiences for added support.
Online Support Communities
Connect with fellow patients and caregivers through BCANs moderated Facebook groups and Inspire discussion forums to share personal experiences.
BCAN Ambassadors
Regionally located survivors share their journey and provide local peer encouragement at BCAN events and programs.
Email Newsletters
Subscribe to BCAN communications like the biweekly Hot Sheet newsletter covering latest bladder cancer news, research, and community updates.
Innovative Research Progress
As a driving force advancing bladder cancer research for over 17 years, BCAN has made tremendous progress, including:
- Awarding $7.5+ million in research grants to date
- Funding 30+ clinical trials investigating improved bladder cancer tests and treatments
- Playing an integral role in the approval of 5 new bladder cancer drug therapies
They continue working tirelessly alongside their medical advisory board to pave the way for promising treatments that extend patient survival and quality of life.
Policy Change Advocacy
BCAN actively lobbies government agencies like the FDA, CDC, NIH, CMS, and Congress for regulatory and healthcare policies supporting the bladder cancer community such as:
- Expedited review/approval pathways for emerging therapies
- Expanded clinical trial access and enrollment diversity
- Required private and public health insurance coverage for screening and care costs
- Increased federal research funding through competitive grants
Public Awareness Campaigns
Getting the word out about bladder cancer risk factors, symptoms, patient needs, and BCANs offerings occurs through various ongoing national outreach programs like:
- Annual Bladder Cancer Awareness Month every May
- Community health fairs/events
- Regional workshop conferences
- Television, radio, print, billboard, and web advertisements
- Physician education initiatives
These multimedia efforts successfully reach wider audiences about this commonly under-recognized cancer.
Navigating a Bladder Cancer Diagnosis
Upon receiving a bladder cancer diagnosis, feelings of anxiety and uncertainty about the future are normal. Fortunately, resources like BCAN and these proactive steps can help guide the journey ahead:
Assemble Your Medical Team
A multidisciplinary medical team familiar with bladder cancer provides the best care. Key specialists include:
- Urologists - bladder surgery experts
- Oncologists - manage chemotherapy/immunotherapy drugs
- Radiation oncologists - oversee radiation treatments
- Pathologists - analyze cancer cells
- Social workers/therapists - address emotional needs
Understand Your Bladder Cancer Subtype
Bladder cancers fall into two main subtypes treated differently - non-muscle invasive or muscle-invasive disease. Know which you have, expected outcomes, and optimal treatment protocols.
Explore Emerging Treatment Options
Advanced drug therapies and surgical techniques continue extending patient longevity and quality of life. Discuss all available and enroll in clinical trials if possible.
Communicate Openly With Your Care Team
Voicing worries, medication side effects, family planning concerns, and emotional struggles to your doctors ensures the best care plan tailored for your needs and priorities.
Adjust Lifestyle Habits Accordingly
Adhering to follow-up monitoring, avoiding smoking, maintaining balanced nutrition, practicing stress reduction, and limiting environmental chemical exposures promotes wellbeing.
The Importance of Community Support Networks
Despite incredible medical advances, coping with bladder cancers emotional impacts remains challenging for many patients and loved ones. Support organizations like BCAN fill this integral need through:
- Reducing feelings of isolation in the bladder cancer journey
- Validating common worries, grieving, frustrations amid diagnosis and treatment
- Sharing tips learned along each phase of the care continuum
- Motivating and inspiring each other during difficult stretches
Additionally, BCANs state-of-the-art Bladder Cancer Center of Excellence serves as an evolving information hub for the latest research breakthroughs and clinical insights that provide patients everywhere the tools to make empowered decisions about their health futures with confidence and hope.
FAQs
How do I contact the Bladder Cancer Advocacy Network?
BCAN can be reached by phone at 1-888-901-BCAN (2226) or by emailing info@bcan.org. Their main office mailing address is 1016 W University Ave, Suite 215, Baltimore, MD 21210.
What resources does BCAN offer?
BCAN provides educational materials, online communities, local events, buddy mentorship connections, clinical trial listings, newsletter updates, awareness initiatives, advocacy programs, research funding opportunities, and more to support the bladder cancer community.
Does BCAN have local chapters?
Yes, BCAN has over 25 regional volunteer-run communities covering various U.S. states and cities. Local groups hold monthly meetings, host awareness events, provide mentoring, and offer localized resources.
What is BCAN's Inspire online community?
Inspire is BCAN’s online support forum where bladder cancer patients and caregivers connect in disease-specific groups to share their journey, ask questions, provide encouragement, and exchange helpful tips.
Who runs and funds BCAN?
BCAN relies on private donations and grants to fund its extensive education, research, advocacy and support programming run by over 50 staff members, including an experienced Medical Advisory Board guiding strategic efforts.
Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult with a healthcare professional before starting any new treatment regimen.
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