How To Take Ownership Of Your Health To Prevent Misdiagnosis: What Jessica Pettway’s Death Teaches Us About Self-Advocating

On a Monday morning in October of 2019, I drove to work, tuned into a conversation with my mom, sister, and aunt on my car’s bluetooth. My mother had been hospitalized the week prior with a mysterious illness. For about six months, steady weight loss, fatigue, high blood pressure, and anemia plagued her body.

Her primary care doctor prescribed her medication to lessen her symptoms and suggested stress relieving activities – presumably – assuming the 47-year old single mother was exasperated from 12-hour shifts as a nurse and the burdens of life. Having entrusted her healthcare to him for the past decade, she took his recommendations without thinking twice.

However, worsened symptoms, coupled with dizziness and shortness of breath, led her to the emergency room that fateful week. After a series of medical exams and scans, the doctor came in to share her diagnosis – stage 4 colon cancer. The doctor who performed her colonoscopy guessed she’d been living with the disease for approximately two years. You could imagine the shock we experienced and the questions to follow.

“Stage 4?!”

“How was this missed?!”

“Where do we go from here?!”

I suppose Jessica Pettway and her family asked a series of similar questions upon her diagnosis of stage 3 cervical cancer in February of 2023. As in my mother’s case, the YouTube star, best known for her eclectic beauty and fashion, was misdiagnosed.

Last July, she detailed her experience in an Instagram post, sharing with supporters that for almost two years she was incorrectly being treated for fibroids. Her symptoms included intense vaginal bleeding, pain that resembled childbirth, passing bloodclots the size of placentas, and fatigue. Only after three hospital stays, 18 blood transfusions, and countless interactions with medical professionals who never investigated her symptoms further, was she referred to an oncologist. It was then discovered the cancerous mass blocking her cervix had been mistaken for benign tumors that typically grow in the uterus.

Dr. Andrea Alexander, Board-Certified OB GYN, shed light on what could have impeded Pettway’s health care providers from diagnosing her sooner. “If you are ever admitted [to the hospital] for heavy vaginal bleeding and transfusions, sometimes we [doctors] can’t appreciate the cervix in its entirety until we have controlled the bleeding. Once we have, and you aren’t in pain and feel stable, request a pelvic exam [to be done] before being discharged.” She also recommends women get an annual pap smear and review the results with their physician. Most importantly she emphasizes that cervical cancer is preventable with the Gardasil vaccine.

Unfortunately, Pettway’s misdiagnosis led to her untimely death this past March. I still have my mom, but it’s heartbreaking to know Pettway’s daughters, Kailee, 7, and Zoi Lee, 3, are having to navigate life without theirs. Even more disheartening is the notion that with earlier treatment her passing may have been prevented.

Studies show women and racial minorities are 30% more likely to experience misdiagnosis than their white male counterparts. Researchers call it an urgent health problem.

So how can you prevent missed, delayed, or incorrect diagnosis? An article by WebMD suggests these tips to help patients reduce the risk, regardless of the health concern.

Get multiple opinions – Good doctors are not threatened by second opinions, they’re strengthened by it. A second opinion can get you answers, reassurance, and deeper knowledge. Be sure to keep a list of screenings you’ve taken so far – tests, X-rays, MRIs, blood work, etc and get copies of them. The law entitles you to your medical records, to retrieve, ask your health care provider for an authorization for the release of information form.

Track your symptoms – Keep specific, thorough notes about what you are feeling. Your notes should describe the symptom, when it comes or goes, how long you’ve had it, what increases or decreases its intensity, etc.

Bring your medication – Some prescriptions have side effects that can change bodily systems and organs it was not meant to. Discuss your prescriptions and over-the-counter medications with your doctor.

Ask questions – Don’t be afraid to ask your doctor questions, they appreciate patients that are proactive about their health. Questions to ask include, ‘What do you need to make this diagnosis?’ ‘What’s your differential diagnosis’ (the list of diagnoses it could be)? ‘Are there other specialists, procedures, or tests that would help you make the diagnosis?’ ‘When do you want me to make the next appointment and what information can I bring to help make the diagnosis?’ ‘What red flags should I look for?’

Know your history – Conditions like cancer, heart disease, even depression and anxiety have a genetic component. Make note of the medical conditions your relatives have, and if you don’t know, ask. Take every screening and exam available, early and often, for those that are generational.

Lastly, listen to your gut. You know your body better than anyone else. You are worth the fight. Advocate for yourself to receive the best care when something seems off.

How To Take Ownership Of Your Health To Prevent Misdiagnosis: What Jessica Pettway’s Death Teaches Us About Self-Advocating  was originally published on elev8.com