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Resources for Patients and Caregivers

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Ongoing support can help patients and their families throughout the bladder cancer journey, whether the patient has been recently diagnosed, is undergoing treatment or is learning to adjust to life after cancer.

The following resources will help you get answers to your questions and connect to other people who have been affected by bladder cancer.

Many of these resources are provided courtesy of the Bladder Cancer Advocacy Network, a key partner of the Greenberg Bladder Cancer Institute. Based in Bethesda, Maryland, the network provides information and support to patients, while advocating for research funding and greater collaboration within the scientific community.

Patient and Family Services at Johns Hopkins

The Harry J. Duffey Family Patient and Family Services Program supports patients and families of the Johns Hopkins Kimmel Cancer Center. The program has resources to address the many needs of bladder cancer patients and caregivers:

  • Practical – Planning your visit, navigating the hospital, handling finances and arranging temporary housing
  • Clinical – Pain and palliative care and cancer rehabilitation
  • Psychological, Social, Emotional and Spiritual – Managing stress, accessing counseling services and spiritual support, and communicating with loved ones

Find a Support Group

At Johns Hopkins

  • Bladder Cancer Support Group – Johns Hopkins patients meet with nurse Joanne Walker to discuss issues primarily related to pre- and postop cystectomy. Call 410-955-5367 or email jwalker@jhmi.edu for details.
  • Living with Cancer Resource Program – Find upcoming support groups, webinars and Q&A sessions dealing with a variety of cancer-related topics.

Bladder Cancer Advocacy Network Programs

  • Online Inspire Community – Ask anonymous questions and connect with other bladder cancer patients and caregivers.
  • Survivor2Survivor Program – The network connects newly diagnosed patients with volunteer survivors who have had similar experiences. Call 1-888-901-2226, ext. 206.

Around the US and Canada

Educational Resources

General Information

  • Bladder Cancer Basics – Signs and symptoms, diagnosis, and general treatment information from the Johns Hopkins Medicine Health Library.
  • Bladder Cancer Risk Factors - The American Cancer Society provides a list of specific risk factors linked to bladder cancer.
  • For the Newly Diagnosed – Bladder Cancer Advocacy Network-compiled guidance about being your own best advocate, from people who are living with bladder cancer.
  • Women and Bladder Cancer – The Bladder Cancer Advocacy Network offers information unique to women and highlights several female survivors and their personal stories.
  • Bladder Cancer Prognosis – The American Cancer Society provides relative survival rates for bladder cancer based on years and stage.

Videos

  • Bladder Cancer Q&A – Surgeon Armine Smith, M.D., from the Johns Hopkins Brady Urological Institute answers questions about bladder cancer, diagnosis and treatment options.
  • Patient Stories – Johns Hopkins bladder cancer patients share their personal stories.
  • Caregiver Video Series – “Walking on Eggshells” gives practical advice to caregivers on communication, advocating for the patient, financial concerns, end-of-life issues and more.
  • Patient Education Webinar – Watch the webinar “Pathway to a Cure” with Trinity Bivalacqua, M.D., Ph.D., and Michael Johnson, M.D.

Survivorship

  • Johns Hopkins Survivorship Resources – What to expect after cancer treatment, including transitioning to primary care, maintaining the work-life-health balance, addressing insurance issues and accessing support.
  • Living Well During and After Treatment – Tips from the American Cancer Society on nutrition, physical activity, work, post-treatment health care and living with the possibility of recurrence.

Advocacy

After an experience with bladder cancer, many patients and their families find it rewarding to get involved in the cause. There are many ways you can help make a difference, including volunteering, donating, raising awareness for the disease and the need for research funding, and sharing your journey with other patients and caregivers.

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