Kirby Lewis, who was diagnosed with breast cancer in 2012 and whose disease metastasized in 2016, says his diagnosis helped his care team detect a heart condition.
Breast cancer can be scary and life-altering at any stage, but those with metastatic disease, which has spread to areas beyond the breast and nearby lymph nodes, live a unique experience. Their perspective and decisions are shaped by the knowledge that their illness is incurable and that they’ll need treatment for the rest of their lives.
Patients facing this diagnosis often say that only others in the same situation can truly understand what they’re going through. CURE® talked with five people living with the disease, all ambassadors for Facing MBC Together, an Athenex Oncology program that includes a website and app designed to provide practical and emotional support. Here, we share an excerpt from Kirby Lewis’s journey with metastatic breast cancer.
Looking back at the night in 2012 when he found a lump in his chest and knew in his gut that it was breast cancer, Lewis easily finds the silver lining: When he under-went preliminary exams for mastectomy, doctors found that he needed open-heart surgery.
“I tell a lot of people that breast cancer saved my life,” says the married 60-year-old resident of West Virginia, who received a diagnosis of stage 2 disease in March 2012 and of metastatic disease in March 2016. “My oncologist and thoracic surgeon and cardiologist all agree that, had I not found the breast cancer, the heart issues would not have been detected, and I would have probably just been walking down the street one day and that would have been it. So, I feel like, in a way, it was quite a blessing.”
“My wife’s first words to me were ‘How are we going to plan anything ever again?’ It ate at my core, but my answer was simply ‘What did we do yesterday?’ Because, yes, it’s not a good prognosis, but you just move on. Plans sometimes are going to be interrupted, but it comes back to my core belief that we don’t get to pick and choose what happens to us. We just get to learn how to live with it.”
On being shunned as a man with breast cancer
“I was at a conference in Philadelphia, hosted by a patient advocacy organization, at a group class teaching how to become a patient advocate in the metastatic breast cancer community, and a woman came up to me and got right in my face — not knowing that I have metastatic breast cancer — pointing her finger and hollering. She said, ‘You have no right to be here.’ It really took the wind out of my sails and made me very anxious, because I was trying to do the best I could.”
“Five months after the advocacy group class, we had lost five of the 28 members. I’m sure everybody was wondering: ‘Am I going to be next?’ So, I contacted everybody and said, ‘If you’re feeling like I am, we need to talk.’ I couldn’t live with the thought that somebody might be so depressed because of this that they would maybe consider taking their own life. That experience was the catalyst that pushed me to say, ‘I want to go back to school for a master’s in psychology, and this is what I want to focus on.’”