Michele Modestin, 55, wasn’t bothered by the two slim, black lines running up her ring finger. She just thought they were a scratch or a scar. Then, in her late 40s, a concerned dermatologist took a biopsy and diagnosed her with Acral Lentiginous Melanoma, a type of melanoma that's more common in people of colour and often goes undiagnosed. According to the Skin Cancer Foundation, the estimated five-year survival rate for Black melanoma patients is only 65 percent, versus 91 percent for white patients. Modestin was faced with a decision: amputate or risk the cancer spreading beyond her digit. She shares her story, ahead.
I don’t even remember how long the spot was there. It was two lines on the skin of my ring finger on my right hand. I thought I scratched myself, so I started putting cocoa butter on it. But when I went to my podiatrist to get a shot in my Achilles, I asked her to look at my finger because my nail would grow a bit then crack straight down the middle.
She looked at the nail and said, “I wouldn’t worry about the nail, but I don’t like the look of those two lines.” Based on her concerned facial expression, I knew she must be seeing something I didn’t. To her medical eye, the lines didn’t look normal. So I went to my dermatologist, and they took a biopsy of it.
It was the day after Thanksgiving when I got a call from the dermatologist with the results. "Your biopsy results came back and you have Acral Lentiginous Melanoma," she told me. Then, she said, "Enjoy your Black Friday and the rest of the Thanksgiving weekend.” I immediately sat down at my computer and started doing research. I called my sister to tell her, and I remember saying that they were going to have to amputate my finger — that was always at the back of my mind.
Eventually I got referred to Richard Shapiro, MD, at NYU Langone Health Centre. He said, “You have the same type of cancer that Bob Marley had.” I knew a little bit about his story: They took the toenail and not the toe, and then it metastasized to his brain. I realized I had to do the amputation.
I’m not one of those people who needs two or three diagnoses or second opinions. I don’t sit on things. I’m a single mom, and I need to live for my children. This cancer moves very quickly, and I already have a family history of cancer. I wanted to do whatever I needed to do to stop the cells.
When the first biopsy was done, the spot was 0.8 centimeters. By the time I had the surgery three weeks later, it was 1 centimeter. That means it was growing. While I was in the operating room, they tested my lymph nodes and found that it did not metastasize. Then, the plastic surgeon came in and did the amputation.
When you look at advertisements for skin cancer, do you see us? You don’t. So, if you don’t see us, you don’t think we can have it.
Looking at my ring finger, the first digit, above the first knuckle, is gone. I don’t wear a prosthesis. We spoke about it, but I didn’t think they could find anything to match my skin colour. I remember getting up on Christmas morning and I couldn’t cook. I wanted to make pancakes, but I couldn’t grab the spoon and stir the batter. I needed the missing digit to stir correctly.
That’s when it sunk in that I would have to learn how to use my hand again through rehab. Things you take for granted, like opening a car door, typing, going to a vending machine and taking change out. I spent a year with a physical therapist who did what she needed to do to build both my hand and self-esteem back up.
I remember when I first saw my stump, my daughter Chanel was there. They took the bandages off and I broke down. At that point, it sunk in. My daughter kept saying, “You’re still beautiful, it’s just a finger.” But it’s still something that I lost.
Black people ask me what happened, and I tell them that I am a cancer survivor. If they ask, "Where was your cancer?" I show them my hand. It’s the look in their face. Yes, we do get skin cancer.
But when you look at advertisements for skin cancer, do you see us? You don’t. So, if you don’t see us, you don’t think we can have it. We as a community need to talk about our issues and enlighten ourselves. I was born and raised in the Republic of Panama, and I never wore sunscreen. Everyone told me to wear a hat, not sunblock. We didn’t wear sunglasses either, and I just had to get cataract surgery from being in the sun playing sports over the years.
When my mom got breast cancer, she would come and get us from school in her caftan without her prostheses on. She never hid it. Everyone in my town knew my mom had breast cancer, and anyone who was diagnosed called my mom. She counselled them and held their hand. We need to really embrace that word “sisterhood.” We need to believe in ourselves, and we need to seek each other out. The world is against us. The world doesn’t see the beauty of us. Now, I don’t go out my way to hide my hand at all. I’m proud of my stump. It grounds me, and we need to share our stories as Black women.
Although the risk of skin cancer is lower in Black patients, it is often diagnosed in later stages, making it more deadly. Andrew Alexis, MD, MPH, director of the Skin of Colour Centre at Mount Sinai Hospital, always tells his Black patients to check their feet, palms, and nails in addition to a regular mole check. “If there’s a brown streak in the nail that’s new or changing, that might be a warning sign,” he says. And don't forget to wear sunscreen.