My experience at Mayo Clinic in Rochester has profoundly changed my understanding of what excellent…read moremedical care can look like.
I came to Mayo during an extraordinarily difficult period of my life, facing both extramammary Paget's disease (EMPD) and breast cancer after having already been through a brain tumor. I was frightened, exhausted, and trying to navigate multiple specialists and major decisions at once.
One of the most important reasons I sought care at Mayo was its highly specialized experience treating EMPD, an extremely rare cancer for which expertise and surgical technique matter enormously.
Before coming to Mayo, the options available to me locally were very different. I had been counseled toward wide local excision and came away believing that I should expect recurrence and potentially a devastating long-term prognosis. No one in my area could offer me the highly specialized, multidisciplinary, margin-controlled approach Mayo has developed for this disease.
When I researched Mayo's outcomes, I discovered something that gave me hope for the first time: Mayo physicians have helped study a Mohs approach using CK-7 immunostaining in which only 2.3% of primary EMPD tumors in that published series had a local recurrence -- meaning 97.7% had no observed local recurrence. Mayo has continued to refine this approach specifically for female genital EMPD through collaboration among Mohs surgery, gynecologic oncology, plastic surgery, and other specialties when needed.
That expertise is ultimately what brought me to Rochester.
My own EMPD surgery required an extraordinarily long Mohs procedure, followed by reconstruction, but my team continued until I had completely clear margins. Hearing that I had 100% clear margins after everything I had feared remains one of the most meaningful moments of my life.
What distinguished Mayo, however, was not simply the expertise of individual physicians, although that expertise was extraordinary. It was the way the entire system worked together around me.
Dermatologic surgery, gynecologic oncology, plastic surgery, breast surgery, medical oncology, radiation oncology, advanced practice providers, and coordinating physicians communicated in a way that made complicated care feel organized rather than fragmented. I repeatedly experienced specialists who understood not only their particular portion of my treatment, but also what I had already endured and what the next member of the team needed to know.
Just as importantly, I was treated like a person.
My physicians and advanced practice providers took time to educate me, answer questions, respect my decisions, and acknowledge the emotional burden of multiple serious diagnoses. Several called me personally with results or updates. Others sat with me, held my hand before surgery, shared humor or pieces of their own lives, and made frightening experiences feel human and manageable.
My breast cancer was treated with a breast-conserving approach that preserved far more than I had expected physically and emotionally. Throughout both cancers, I felt that the people caring for me were thoughtful about not only eliminating disease, but also preserving quality of life, dignity, function, and my ability to make informed decisions about my own body.
I have repeatedly found myself thinking that somehow the exact person I needed appeared at the exact moment I needed them.
Mayo gave me something I had been struggling to find elsewhere: a genuine sense of safety in medical care.
I arrived frightened about what these diagnoses might mean for the rest of my life. I left knowing that I had received care from people who had devoted significant expertise to understanding diseases as rare as mine and who were willing to work across specialties to give me the best outcome they could.
I am profoundly grateful for the expertise, compassion, interdisciplinary collaboration, and humanity I experienced there.
Mayo Clinic has earned my deepest trust.
