“Excuse me, Miss!” I gaze toward the voice bringing me to a stop as I enter the hospital. “Do you have a visitor’s pass?” This is not the first time I’ve been asked this question. “I am a patient,” I say. Two raised eyebrows emitting a look of shock respond, “You are the patient?” and a blank stare of disbelief follows when I confirm, “Yes.”
I look healthy. Thankfully, I currently feel healthy, too. But I have metastatic breast cancer.
Hollywood’s depiction of someone with cancer — bald, frail, thin — has become the widely-accepted social standard. In reality, there is also a large population that lives with cancer as an invisible illness.
“People will say, ‘How do you have cancer and look like that?’,” says Kelly Crump, a Sports Illustrated swimsuit model who frequently posts about living with metastatic breast cancer. “It reminds me how important it is to continue talking about metastatic breast cancer and showing what it can look like, and what it does look like for so many people. And that means there needs to be a lot more awareness.”
In the world of cancer, stereotypes prevail as norms, perceptions blur with reality, and the past gets warped into the present. Our modern brains arguably have a harder time computing the idea of living with an incurable disease.
There are an estimated 168,000 women living with metastatic breast cancer, according to the Breast Cancer Research Foundation. Also called stage four breast cancer, this is when cancer cells travel from the breast to somewhere else in the body such as your organs or bones. But beyond the common thread of our diagnosis, we all have our own unique stories and treatment plans.
The narrative must evolve…and it’s starting to. “Metastatic breast cancer is very scary but is also very hopeful — and getting more hopeful by the day,” says Marleen Meyers, MD, a medical oncologist, clinical professor of medicine, and the director of the Cancer Survivorship Program at Perlmutter Cancer Center at New York University. “We think of survivorship largely for curable cancers but I think survivorship is equally important in people with metastatic cancer to support and enhance quality of life,” says Dr. Meyers.
Significant strides are being made to change the prognosis of stage four breast cancer. Since 2016, nine new drugs have been approved by the FDA, helping patients live longer, fuller lives — and many of those eliminate the visible side effects people have learned to associate with the disease.
“One positive thing about the evolution of breast cancer treatment is that often we don’t have to give chemotherapy, and we can mitigate the outward side effects that someone might have historically undergone,” says Elizabeth Comen, MD, a medical oncologist at Memorial Sloan Kettering Cancer Center in New York. “But because we have these historical perceptions, whether it’s from family or the movies about what a cancer patient looks like, some people are taken aback and assume that because somebody has not lost their hair or doesn’t look emaciated, that perhaps they’re not suffering. We need to have an expanded lexicon or expectation that cancer is not just about how somebody looks,” Dr. Comen explains.