Living the Full Cancer Experience With Compassion, Grace and Skill

Advocacy Groups | <b>Bladder Cancer Advocacy Network</b>

Backed by her personal cancer experience, an oncology nurse became a volunteer with the Bladder Cancer Advocacy Network.

By: Stephanie Chisolm, PhD

I first met Karen Sachse at the inaugural Bladder Cancer Advocacy Network (BCAN) Summit for Patients and Families in 2016. She was sitting at a table of patient advocates with her husband, Roger.

Karen had received a diagnosis of non-muscle-invasive bladder cancer a few years earlier. She attributed her disease to eight years of handling bags of chemotherapy chemicals as a clinical nurse specialist at Children’s National Hospital. In theory, that may have made sense because chemical exposure is a risk factor.

However, Roger also had received a diagnosis of bladder cancer. His was a muscle invasive diagnosis. He endured the standard of care and Karen helped him recover from bladder removal surgery. Sadly, bladder cancer took Roger’s life a few years later, but not before immersing Karen in the full spectrum of experiences associated with bladder cancer, the sixth most common cancer in America.

In addition to her professional work in oncology as a nurse educator for Servier Pharmaceuticals and a senior clinical nurse educator at Inova Schar Cancer Institute, Karen has used her personal experience asa patient and caregiver to fully engage as a BCAN volunteer. Karen works tirelessly to help improve the lives of patients with bladder cancer and caregivers. She brings her education and professional — as wellas personal — experience to research advocacy.

Karen is involved in patient-reported outcomes studies and serves as an adviser to the Patient-Centered Outcomes Research Institute (PCORI)-funded CISTO award. Karen has shared her patient and caregiver experiences publicly with the BCAN clinical and research community as a speaker at our 2019 Bladder Cancer Think Tank and has also served as a patient advocate on the planning committee for this preeminent bladder cancer research meeting.

As an oncology nurse navigator at Inova Health Systems in Virginia, Karen works tirelessly with BCAN and the team at Inova Schar Cancer Institute to ensure patients with bladder cancer have the programs, materials, care and support they need as they go through their bladder cancer journeys.

Karen is an extraordinary and compassionate healer, both professionally and personally. She really does know what it is like to have bladder cancer and how to be a caregiver for someone with bladder cancer. She knows how to treat and support patients and families with cancer, and that is extraordinary, to say the least.

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