‘My Skin Cancer Was Misdiagnosed for Years’

When I was a sophomore in high school in 2012, I noticed light patches on my cheeks for the first time when I looked in the mirror. Oh my god, what is this, I wondered.

On my hands, I had eczema when I was a child, but it was scaly itching rather than light-colored spots on my pecan-brown skin. My mother drove me to a dermatologist in the area of Hampton, Virginia, where I still reside, because I had never experienced anything like it before.

The long search for a diagnosis

Without performing a physical examination or ordering any tests, the first doctor I saw (an older white woman) simply looked at my face and diagnosed me with vitiligo, a condition that causes skin and hair to become colorless. Although it can happen to anyone, people of colour tend to notice it more.  I then pushed her.

The condition pityriasis alba, which manifests as scaly light-colored patches and is more noticeable on darker skin, could also be the cause, she added. She refused to give me any cream or ointment to help with the symptoms (despite the fact that research suggests some may help), and she told me there was no cure for it. therefore dealt with it for the next two years.

By the spring of 2014, the spots had moved from my face to other parts of my body. I went to a different dermatologist, this time a woman of color, who took two biopsies from my thigh and arm. My skin condition, progressive macular hypomelanosis, which causes patches of skin with less pigment than the surrounding areas and spreads over time, is what she diagnosed me with.

Although there is no known treatment for it, she suggested UV light therapy. I gave it a try for a while, but when I didn’t get any results, I gave up and only used the topical steroids she recommended. The patches on my arms and legs didn’t get any better, and while it temporarily helped the spots on my face heal, they would soon return.

It was challenging, but I did my best to keep the condition from dominating my thoughts. I covered myself up with long sleeve shirts and pants because I was afraid that people would stare at me in disgust and wonder what was wrong with my skin. My skin didn’t resemble anyone else’s, and I felt like I wasn’t normal. I basically didn’t want people to see me, so I was hiding a part of who I was. The following few years were difficult for me, but when the pandemic struck, I finally received some answers.

How the mystery of my skin was finally solved?

I was finishing up graduate school in the spring of 2020, and everyone had begun working and attending classes online. Even though I still had some spots on my face, they were nothing compared to the ones that were on my arms, legs, and back.

When it came to it, I had had enough and Googled the “best dermatologist” in my vicinity. The first name that came to mind was Valerie Harvey, M.D., M.P.H., FAAD from nearby Newport News, Virginia. She had excellent reviews, and I noticed that she was a woman of color, so I assumed that she could relate to me. She is currently running for president of the Skin of Color Society, a group that works to increase awareness of dermatology-related problems affecting people of color.

In March of last year, I went to my first appointment with my grandmother, a genuine woman of faith who never fails to support and encourage me. I explained the situation to Dr. Harvey, who looked at me and said she immediately recognized it as mycosis fungoides, also referred to as cutaneous T-cell lymphoma.

Also Read ABout Finding the Right Diagnosis Took More Than a Year

It is extremely uncommon for mycosis fungoides to affect the skin and cause cancerous lesions.

According to research, only 6.1 out of every million African Americans and 4 out of every million white people have mycosis fungoides. Mycosis fungoides can appear as light spots on people with darker skin than it does on lighter skin types, which can resemble a red rash or a scaly patch. Dr. Harvey was able to recognize it on me because he had previously seen it in patients. I felt such relief. I had at last discovered a medical professional who understood what she saw and how to treat it.

Feeling hopeful with the right treatment plan

Since October, I’ve been receiving UV light treatments three times per week, and the regimen has been so successful! According to Dr. Harvey, phototherapy may function by obstructing cancerous T-cells directly or by reducing the body’s immune response to the abnormal cells.

Because specific ultraviolet wavelengths are used in a controlled environment, it is not the same as sitting outside in the sun. I take off my clothes for each treatment, enter a lightbox that resembles a standing tanning bed, close my eyes, and remain inside for 8 to 10 minutes. According to Dr. Harvey, numerous studies are looking into different mycosis fungoides treatments.

My skin has changed completely since yesterday in terms of improvement.Recent bloodwork revealed no indication of the cancer in my organs or blood. I’m lucky because this condition can spread internally if it progresses to more severe stages.

Despite all the issues I’ve had with my skin over the years, I never considered the possibility that cancer might be to blame. It was God’s will for me to experience this specific type of cancer because I was able to overcome it and am now able to empower and inspire others who may experience comparable problems.

Also Read ABout Finding the Right Diagnosis Took More Than a Year

Why was it so difficult for me to receive a correct diagnosis?

Dr. Harvey claims that because mycosis fungoides is challenging to identify, both clinically and under a microscope, it frequently goes undiagnosed for years. The fact that the cancer wasn’t detected in the biopsy performed by my second dermatologist explains why it sometimes requires multiple biopsies for the disease to manifest itself in a sample.

In our society, biases must also be taken into account. Even though I’d like to think that my skin tone and the skin tone of my doctor weren’t factors, research reveals that racial disparities still exist in the field of dermatology. In fact, a study found that individuals of colour with psoriasis have a higher likelihood of going undiagnosed than individuals of white ethnicity. Another study discovered that only 4.5% of illustrations in medical textbooks show people with dark skin, making it challenging for doctors to learn how to diagnose patients of all skin tones.

I’ve become more conscious of these systemic disparities as I work toward my Master of Arts in Humanities and certificates in Diversity Studies and Women and Gender Studies, and I’ve come to understand the value of advocating on behalf of marginalized communities. People of colour have a higher mortality rate from skin cancer, which researchers believe may be related to a combination of lower awareness, earlier diagnosis, and socioeconomic factors that make it more difficult to access high-quality care.

We in the Black and Brown communities must speak out and say, “This isn’t right.” I am knowledgeable about the subject. Please don’t downplay how bad it is for me right now.

It’s important to stand up and say, “This isn’t right. I know what I’m talking about.”

It can be terrifying to speak up for yourself because doctors are regarded as the experts who know everything, but it may also be a matter of life or death. Find a new doctor if you don’t think your current one is doing a good job. Living in a rural area can be challenging, but telemedicine is revolutionizing the dermatology field of medicine and giving more people access to quality care. Continue until you receive the responses you believe you are due.

Look up doctors online, and then read reviews. The Skin of Color Society keeps a database of doctors with experience treating people of color, and the American Academy of Dermatology has a tool for finding specialists in specific conditions.

I’m fortunate that the cancer did not spread beyond my skin, despite the fact that I had skin issues for ten years. Not everyone is able to do that, but I was able to grasp it. I believe that as an educated Black woman in this society, I have a responsibility to do my part to bring attention to the forms of oppression that persist in marginalized communities and to use my knowledge to elevate the voices of those whose voices have been silenced.