As a Black woman, I never thought I'd be at risk for developing skin cancer. But at 22 years old, my whole world changed when I received a diagnosis.
I remember that day clearly. I was sitting in the surgeon’s office after hearing the news and thought to myself, “Melanoma? How could this be? I’m not a fair-skinned middle-aged Caucasian woman.” Prior to being diagnosed myself, that’s the only group I had ever heard of being at risk for developing melanoma, which I now know is the most deadly form of skin cancer. No one ever mentioned to me that people who have darker skin could get skin cancer, too.
I grew up in New Jersey, and like most folks, I spent summers “down the shore” or at the beaches in New England, but wearing sunscreen wasn't really a part of my routine.
We all have friends who get a sunburn as soon as they step a foot out the front door — you know, those who are very pale, probably have freckles. Those were my only friends who religiously used sunscreen. Everyone else wanted to tan.
Then there was me, who never even thought I could burn.
I remember vividly, on an eighth grade trip to Disney World, a friend looked at me and said, “Jackie, you have a sunburn." I laughed and told her I can’t burn. She laughed too and replied, “Well, why is your nose red and shiny? Tomorrow, it is going to peel."
The very next day, the skin on my nose did just that. And it happened to me every summer. I just never realized I was experiencing a sunburn. Looking back, I now know that those early burns increased my risk of developing melanoma.
That being said, I didn’t understand the seriousness of melanoma at the time. So as a little girl, when I developed a mole on my right upper thigh, lower butt cheek area, I didn't necessarily think much of it. But as I grew older, the mole grew too.
Finally, when I was 13, my parents took me to see a dermatologist to get it examined. I figured the dermatologist would be able to laser the mole off. However, he told us it needed to be surgically removed. Since he did not believe the mole was malignant, he expressed having it removed would be merely cosmetic. Fearful of surgery, I chose to just live with it.
By the time I was 19, the mole had irregular borders, a rough texture, and would bleed on occasion — several of the ABCDE’s of melanoma.
I went back to the physician and he was able to perform a biopsy in his office. He had to do a “wide excision,” however, which meant cutting a large area around the mole and deep into my thigh. The wound required 30 stitches. The thought of receiving the biopsy result terrified me.
That specific mole came back negative for cancer. But three years later I was diagnosed with stage III melanoma.
Courtesy of Jacqueline Smith
I remember during my entire senior year of college, I had this lump on my bikini line — unlike anything I’d experienced. It was deep underneath my skin. It was firm, yet painless, and almost the size of an almond. I was concerned and went to the university health center on multiple occasions. I was told it was nothing to worry about.
Shortly before graduating, I had an appointment with the gynecologist who assured me, “It’s just an inflamed lymph node, if it doesn’t bother you, don’t bother it.” But I could feel it, and it grew to the point where, eventually, I could see it through clothing.
After graduating and returning home, I went to my primary care physician for a second opinion and he referred me to a surgical oncologist. The surgical oncologist said he would biopsy the lymph node. However, this time, it wasn’t an office procedure. I was scheduled for same-day surgery.
I returned to the surgeon’s office a few days later to receive my results, not anticipating any bad news. But as I walked into the exam room, I passed the surgeon sitting at a desk. Prior to the surgery, he was jovial. Now, he wouldn’t look at me.
Instantly, I developed a sinking feeling. I waited for what seemed like an eternity in the exam room. When the doctor came in, he did not smile. He looked at me, with both concern and pity and said, “Jackie, we found melanoma cells.”
At the time, I only had two treatment options: a radical groin dissection, where my pelvic and inguinal lymph nodes would be removed, along with adjuvant high dose interferon (a highly toxic immunotherapy), or watch and wait. My medical oncologist explained that since surgery and interferon were debilitating, and considering my post-surgery scans were clear, we should watch and wait.
For six years afterwards, I constantly checked my bikini line — feeling for lumps and bumps. Though I hoped my cancer wouldn’t return, it was an ever-present fear. Then prior to starting my doctoral program, I felt what I thought was another lump in the same area.
I spent the first semester panicking and worrying. I eventually made an appointment with a general surgeon right before winter break. He performed a needle biopsy and rushed the results.
My mother wanted to come to Syracuse to be with my when I received the results but, somehow, I again convinced myself that I was okay.
I couldn’t have been more wrong.
A week before I was scheduled to go home for break, I learned I had a recurrence of stage III melanoma. I was as devastated this time as I was when I got my first diagnosis.
I enlisted the help of friends in medical school and called numerous dermatologists for treatment options. In the end, I chose a melanoma specialist at the H. Lee Moffitt Cancer Center in Tampa, Florida.
This time, I had to undergo the therapy that the doctor had recommended I avoid before. I also qualified for a clinical trial where I injected myself weekly with the immunotherapy.
Because my melanoma was detected in the majority of the lymph nodes I had removed, I also underwent four months of radiation therapy. I went for treatment every day, Monday through Friday.
Thankfully in the end, the treatment worked and ever since my results have shown no evidence of disease (NED). But I do suffer from a few substantial side effects.
I developed lymphedema in my right leg as a result of my surgery and radiation — a progressive, incurable condition characterized by swelling, hardening of tissue, and often times deformity of the affected area.
I have also since had three additional surgeries to try to control the swelling. I've had lymph vessels connected to veins in my leg, lymph nodes removed from my left side and transplanted into my right ankle, and liposuction — all on my right leg. Yet, I still have to wear a compression stocking on my leg every day and a special garment at night. My insurance didn’t pay for any of the surgeries or my compression garments.
I've also developed autoimmune issues from the interferon as well, but I guess that’s somewhat of a small price to pay to be NED (which is the preferred term instead of "in remission"), or a long-term survivor.
On the bright side, however, this experience really helped me to put a lot of things into perspective. When I look back at my journey, melanoma is only a small part of it, and I’ve been fortunate to have the good in my life outweigh the bad.
My fiancé, for example, is my real-life Prince Charming. While in the hospital following one of my many surgeries, he smuggled in ramen from one of my favorite restaurants. He also refused to call the nurse when I needed any type of minor assistance, insisting that he care for me.
Even now, with my autoimmune issues, there are times when I can’t use my hands because they're stiff, weak, and painful. He makes sure to cut up my food for me so I can eat. When I am self-conscious over my many surgical and radiation scars, he reminds me that he fell in love with me with those scars.
So even though I could mope around and feel sorry for myself, I'd rather focus on the positive. And then there’s the fact that there are so many people who have had the same disease as me, did all the treatments, did everything they could to beat their melanoma — and they’re no longer here. When I think about that, I really have no other option but to just be grateful.
In 2018, the American Cancer Society predicted that 91,270 people would be diagnosed with melanoma, with Black people being the least likely to develop the disease. To further put things into perspective, the organization also stated that for every 26 white people diagnosed, only one Black person would be. I was that one.
And while the odds are technically in our favor, a 2016 study from the Journal of the American Academy of Dermatology found that our community has the highest mortality rates after we've been diagnosed. So despite everything I've gone through, I still see myself as one of the lucky ones.
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Coming out of my experience, the message I want to send to other Black people — and any other person of color who has dark skin — is to please stop thinking that your melanin is some form of natural sunscreen. Considering all I’ve been through, trust me, it will not give you immunity from cancer.
Melanoma is one of the only forms of cancer that you can actively try to prevent from happening. So why not just wear sunscreen to cut down on your likelihood of developing this disease?
Believe me, skin cancer is so much more than simply getting a mole removed. And if I had known more about the importance of sun protection before, the difference such a small everyday action could make, I would have been a lot more vigilant about protecting my skin.