Michele Longabaugh, RN

Patient Advocate

Michele Longabaugh was a wife, mother, author, and nurse who worked for a cardiac device company in Wichita, KS. In February 2010, at the age of 47, she was diagnosed with advanced, poorly differentiated Stage 4 Anal Cancer with metastasis in the sacral bone. Her prognosis was poor. After surgery to remove the sacral tumor she received an aggressive protocol of simultaneous chemotherapy and radiation, and she went into remission. Two years later a metastatic lesion was discovered in her right lung for which she underwent a right lower lobe wedge resection. Six months later two additional lesions appeared in the right lower lobe, this time in the hilar area. She was referred to a large university where she underwent chemotherapy and targeted radiation. She had no remaining evidence of disease since October 2013 and continued to be under close surveillance. After her recurrence she found meaning in her diagnosis of this rare and stigmatized cancer through advocacy work

She advocated for anal cancer victims by creating a blog, which she published. She shared her experience, writing and collaborating on journal articles with her care givers in various publications, sitting on oncology advocate boards and councils, and doing interviews for television and radio. In recent years she had turned her attention to research advocacy. Her first experience was at MD Anderson as a patient advocate on their HPV-SPORE committee. She was an active member of the NCI Rectal Anal Task Force as a patient advocate. In addition, she was the co-Education Director for PIVOT (Patients and Investigator Voices Organizing Together) at the Midwest Cancer Alliance, and she sat on their Rapid Reactor Team. She had worked with the American Cancer Society Cancer Action Network both in Topeka and Washington D.C. supporting palliative care bills and initiatives representing the patient voice. Michele was passionate about the patient survival experience, particularly minimizing the long-term side effects following treatment. She was an active member of the Peer to Peer program with the HPV & Anal Cancer Foundation supporting other patients confronted with anal cancer. At a meeting she said she wished they had treated her like she was going to survive longer than a year and addressed the symptoms from the treatments she received. Michele was happy to join our team and was a very active and reliable member. She will be missed by all of us.

Michele passed away June 10, 2020.