Her mother had also had breast cancer years before, so her doctor suggested she and other members of her family receive genetic counseling. Genetic tests revealed she, her sister and her son had the BRCA-1 gene mutation, which is strongly linked to an increased risk for developing breast cancer. According to the National Cancer Institute, while only 12 percent of all women will develop breast cancer, between 55 and 65 percent of those who have the BRCA-1 gene mutation will get it.
After finding out she had the BRCA- 1 mutation, Deford’s sister underwent a preventive mastectomy. However, she faced complications from the surgery. She died shortly after the procedure in 2016. After her sister’s death, Deford found out she had bleeding disorder. She thinks her sister may have had the same condition, which could have led to the unusual complications she faced after her surgery.
Deford opted not to get a mastectomy, but knowing about her increased risk for breast cancer means she gets checked out more often.
“Once a year, I have a mammogram and once a year I have an MRI,” she said. “So every six months I am getting checked.”
Knowing she is at risk isn’t easy. She admits she gets nervous before her mammogram until she gets the results. But she doesn’t regret getting tested and knowing she has
the BRCA-1 mutation, because it means her son now knows he is at risk and can be closely monitored, too.
But Deford is still positive. She’s been living with loss for a long time now and has learned to take each day as it comes. She lost her son Jason shortly before he turned 5. He had a rare condition called Leigh syndrome, although it was not diagnosed until after his death.
Since losing her son, she has tried to live her life by a certain set of principles. Most of all, she just wants to help people. That’s why she loves her job working in the neonatal intensive care unit at UF Health Shands Hospital. Because she knows what it’s like to have a sick child and to lose a child, she feels she can relate to and help the parents there.
“When I lost my son, there had to be a reason for me to keep living,” she said. “What I lived by all these years is whatever good I can do, let me do it now because I may not pass this way again. Because of him, I have done a lot of good in this world. Most of all, it’s important to just be nice. You never know what the person standing next to you is going through. It’s best to smile and be nice. A smile is all it takes to change someone’s day.”
Through all of the struggles she has faced during the past two years, Susan has relied heavily on Jack, her 100-pound orange and white dog.
“He really relieved my anxiety. There was too much going on and there was no time to stop and process it,” she said. “He just seemed to intuitively be present for me. If I was home laying on the couch, he was with me. If I was at the dining room table, he was there too. He never left me.”
Deford describes being a cancer survivor as a five-year marathon. It isn’t always easy. She has to take medications that don’t always leave her feeling great. It takes a lot of fortitude, she says. But she is grateful for every day, and that she gets to call herself a survivor.
“I want to encourage women to get their mammograms,” she said. “It is an expense. I know it is not very comfortable. But I want to encourage people to do it because you never know.”