Under 40s – Perform Your Breast Self-Examinations
Ashley
State: North Carolina
Congressional District: NC04
Diseases
Cancer
Issues and Challenges
Ashley has encountered: Access to Expert Providers, Access to Medicine, Insurance Issues, Gaslighting, Invisible Illness, Medical Discrimination, Underserved Community
My Story
“There’s nothing here that looks remotely concerning. And, plus, you have no family history and you’re too young to have cancer.”
Those are the words I heard from my primary care physician’s assistant approximately one month before I was diagnosed with Stage 3 breast cancer. A diagnosis that came about mostly because of my own advocacy and insistence that something wasn’t right within my body after finding a lump in my right breast during a routine, monthly self-exam.
After that visit, my provider agreed to order a screening ultrasound “for peace of mind”, which was quickly upgraded to a diagnostic mammogram, and a few hours later, a biopsy to confirm it all. I was 37. Not, in fact, too young for cancer, after all.
After a decade in a career as a doula (another word for patient advocate in maternal and infant health), I found myself navigating the healthcare system on my own behalf. From my first oncology appointments, to the start of chemotherapy just 11 days later, I was catapulted into a whirlwind Master Class in the vulnerable, difficult and long patient experience.
I carefully selected and have worked in partnership with my oncology teams. We communicate openly and have a shared decision-making regarding my course of treatments. Unfortunately, I have also done a considerable amount of follow-up to get appointments and tests scheduled, medical costs billed appropriately and correctly, and results communicated in a timely manner. Even for me, a professional healthcare advocate, and someone who is comfortable and familiar with speaking up and often about questions and concerns with my providers, this has been no easy task.
Breast cancer is one of the most well-funded and well-understood cancers, and thankfully, many treatments are available. However, there is no such thing as a “good cancer”. A cancer diagnosis alters the trajectory of someone’s life, and this change is even more drastic for the AYA community.
Following chemotherapy, radiation, a mastectomy, more targeted therapies and an entire year spent on medical leave from my career, my life was disrupted in many ways. It has been forever changed.
The special risks that the healthcare system poses for young adults with cancer - and the uphill battle we often face in seeking treatment for concerns that we are “too young” to face, are frustrating and avoidable. Breast cancer in people under 40 is most often caught in later, incurable, and much deadlier stages. This is because for those of us without a substantial family history of breast cancer, screening mammograms are not recommended nor are they covered by insurance. Self-exams have even been discouraged by the American Cancer Society, due to the “unnecessary emotional stress” that could come from a biopsy on benign masses or fibroids.
It is my duty now to use my survivorship to share my story, speak loudly about the life-saving potential of monthly self-breast exams in people under 40, and to help other Adolescent and Young Adult (AYA) patients become the central, vocal part of their own healthcare team.
My Motivation and Inspiration
Currently surviving HER2+ Breast Cancer, and forever encouraging people to be their own experts in their own bodies, as it could save their own life.
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