October is Breast Cancer Awareness Month. Women with NF1 have up to a five-fold higher chance of developing breast cancer before turning 50 compared to women without NF1. Even beyond age 50, the overall risk remains significantly elevated at 3.5 times higher than average.
Judy Russo’s daughter Catherine lived with NF1 and, at the age of 45, was diagnosed with breast cancer. She passed away in 2021. We are honored to share Catherine Russo’s Story of NF.
We first noticed Catherine’s café au lait spots when she was an infant, but she wasn’t diagnosed with NF1 until she was almost two years old.
Catherine had learning disabilities and dietary difficulties with an aversion to many types of food. Her sense of smell was deeply affected. Learning disabilities consequently caused a lot of difficulty in school.
She had a fibroma on her eyelid that seemed to me as a defining moment with her self-confidence. We went to a doctor and asked if the tumor on her eyelid could be removed because it was such a problem and he recommended not to try it because it might grow back larger. We do believe that diagnosis was in error so Cathy had to live with the disfigurement.
At the young age of 45, Cathy was diagnosed with breast cancer and thought it was in remission, but it had metastasized to her bones. If her gynecologist had been more knowledgeable about her condition during yearly check-ups, maybe things could have been different. She did make him aware of her NF, but that never caused the doctor to become alarmed.
Cathy passed away three years ago, in 2021, and I am writing this message to hopefully make others with the NF1 aware of this.
Cathy struggled in school until she was able to turn her life around. She then started to enter Penn State’s World campus until her cancer diagnosis and was not able to complete her degree with only two courses left. She had jobs in which she worked in offices as a clerk.
She was so loving and caring and her family was the center of her life. Catherine’s favorite song was Amazing Grace.
–Submitted by Judy, Catherine’s mom
Click here to learn more about the risk of breast cancer and neurofibromatosis type 1 (NF1).
