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:

- Patient and Family Services at Johns Hopkins
- Find a Support Group
- Educational Resources
- Survivorship
- Advocacy
- Patient Stories

Bladder Cancer Advocacy Network

Many of these resources are provided courtesy of the Bladder Cancer Advocacy Network (BCAN), 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

  • Email us at bladdercancer@jhmi.edu if you would like to be added to our email distribution list for support group updates and meeting announcements.
  • 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 Checklist - The Greenberg Bladder Cancer Institute created a guide on useful questions to ask care providers, recourses to explore and more helpful information on bladder cancer.
  • 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.
  • Get a Second Opinion - We offer remote second opinions for patients who have been diagnosed with bladder cancer by another institution in most states in the U.S. In-person opinions are also available.
  • Caregiver Advice - The "Walking on Eggshells" video series gives practical advice to caregivers on communication, advocating for the patient, financial concerns, end-of-life issues and more.

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

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

Patient Stories

Patients and their physicians choose Johns Hopkins for bladder cancer care because our team of urologists, oncologists, nurses, pathologists and radiologists is one of the most experienced in the world. Hear the personal stories of a few of the countless bladder cancer patients who have benefited from our individualized, innovative approach.

After being diagnosed with bladder cancer, John came to the Brady Urological Institute at Johns Hopkins for its innovative diagnostic and treatment options. When nonmuscle-invasive bladder cancer recurred as muscle-invasive, John opted for bladder removal.

When his non-muscle invasive bladder cancer did not respond to treatment, Warren met with Noah Hahn, M.D., at the Johns Hopkins Greenberg Bladder Cancer Institute. The unique approach fostered by our multidisciplinary team was able to spare his bladder, facilitating a full recovery and a quick return to his dental practice.