Robin talks about solving the mystery of her misdiagnosis.
Q: After your rigorous treatments and taking time to recover, how did you start solving the mystery of your misdiagnosis?
A: I had several physicians give second, third, and even fourth opinions on my mammogram, breast ultrasounds, and breast biopsy results. Through these opinions, I ultimately discovered that there were multiple errors in my breast diagnostic testing and that my surgeon over-relied on a needle aspirate biopsy rather than doing a more definitive core needle or excisional (surgical) biopsy. Additionally, I learned that my initial breast biopsy was misread and was positive for pre-cancer, ductal carcinoma in situ or DCIS. Unfortunately, due to my delayed diagnosis, my DCIS or precancer got so large that it spread, an event that does not usually occur in DCIS, if caught early enough. I did eventually file a medical malpractice lawsuit and settled out of court, and I filed a complaint with the Office of Professional Conduct in my state against my negligent radiologist, surgeon, and pathologist who misdiagnosed me.
Q: Your story sounds unusual. Is this kind of misdiagnosis uncommon?
A: My story is not uncommon! At least 10,000 women per year are misdiagnosed with breast cancer and most of these women are young! Physicians commonly misdiagnose young women due to age bias where breast cancer is not expected in a young woman, as the median age for a breast cancer diagnosis is 63 years old. As a result, often physicians do not do all the correct tests and aggressive procedures to adequately rule out cancer, thinking cancer is not possible in a young woman. This is particularly unfortunate as young age is a negative prognostic factor in breast cancer diagnosis, where cancer is often more aggressive, and a delayed diagnosis may gravely impact on prognosis.
Q: Congratulations on surviving all of this, and persevering despite the misdiagnosis and the delay in treatment. What are you doing these days to raise awareness and funds?
A: I feel a calling to turn my tragic experiences into something positive for others and educate other women that it is not enough to just see a doctor when a breast lump is found. Instead, I suggest that women need to become their own advocates. I published a book about my experiences, called "Breast Lump What Lies Beneath," in order to help increase awareness of breast cancer in young women, to increase awareness of the epidemic of doctor-related breast cancer misdiagnosis in young women, and to help guide women in how to obtain the correct breast diagnosis. I also believe my story will encourage those who have already suffered a misdiagnosis or cancer diagnosis. A percentage of the proceeds from my book will go to the Young Survival Coalition and the Breast Cancer Research Foundation.
Gray is a good example of being persistent with your doctors and educating yourself about the possibility of breast cancer. She sincerely feels that getting multiple opinions and being proactive about your own health can help prevent a misdiagnosis, and may save your life.