My melanoma was dismissed as an inflamed hair follicle

My melanoma was dismissed as an inflamed hair follicle

As told to Nicole Audrey Spector

When I first noticed the lump on my bikini line, my gut told me something was wrong, so I promptly made a doctor’s appointment. I was in college at the time, so the campus health center was the place to go.

The doctor examined me and assured me the lump was just an inflamed hair follicle – nothing needed treatment – and sent me on my way. Over the months, the lump didn’t go away and I still knew in my gut that something was wrong. I used to have inflamed hair follicles and this felt deeper, weirder. It also seemed to get bigger over time.

So I kept going back to the doctor and kept being told there was nothing to worry about. I asked to see an OB-GYN. He took a look at the lump and said, “It’s an inflamed lymph node. If it doesn’t bother you, don’t worry.

Graduation has arrived: an exciting and frenetic moment. I have not forgotten the lump; but I got lost in the momentum of the transition. And after all, I was fine, right? A healthy 22 year old female. All the doctors had said so.

Shortly after I graduated, I accompanied my mother to her routine mammogram. On display in the technician’s space was a cast of a breast with an example of a malignant lump. The malignant nodule was described as “firm”, “slow growing”, “painless”.

I instantly thought about the lump on my bikini area. He checked all the boxes for a malice based on those qualifiers.

I made an appointment with my primary care physician, who referred me to a surgical oncologist. The word “oncologist” alarmed me. Why should a cancer specialist be involved?

“I’m sure it’s nothing,” my PCP assured me. “I’d rather be safe than sorry.”

So I had surgery to remove and biopsy the mass (which ended up being a lymph node). I remember wanting to see it, so they showed it to me later – it looked like a dark brown colored egg.

I knew it was bad news as soon as I saw the surgeon’s face when I returned for my results. Before the surgery we had been friendly with each other and joked. He now he could barely meet my eyes and his mood was tense and solemn.

“Jackie, you have stage 3 melanoma,” she said.

My first thought was rooted in disbelief: I’m not a fair-skinned middle-aged Caucasian female. How could I have melanoma?

After receiving the diagnosis, I met with a cancer doctor who laid out my treatment options. I could have immediate treatment, which would involve the removal of a chain of lymph nodes and fatty tissue, along with whatever else was needed depending on whether or not the cancer had spread, followed by harsh systemic immunotherapy which would require me to delay my plans for graduate school because I’d be too sick to attend; or I could choose to watch and wait. This would mean doing blood tests and scans to rule out the cancer metastasizing elsewhere.

Further tests revealed the cancer hadn’t spread, so I decided to just watch and wait. I went to graduate school.

Three years later, I discovered another lump in my bikini area. It was like groundhog day. Same thing again. Only this time I knew exactly what to do. I got a referral from a surgeon who performed a fine needle biopsy.

The biopsy revealed melanoma cells. Watching and waiting was over. It was time for the “harsh and toxic” treatment.

I asked several doctors and specialists for opinions. The outlook was grim. At one point I was told it would be a miracle if I survived another five years.

I underwent a total lymph node dissection in my right groin and fortunately qualified for a clinical trial in which I had to self-administer weekly injections of immunotherapy and completed a brutal four months of daily pelvic radiotherapy.

Fortunately, the treatments have been successful. As of 2008, I have had no evidence of cancer in me. But some of the effects of what I went through are eternal.

Due to both surgery and radiation, I have lymphedema in my right leg. I use a compression pump and wear a compression stocking on my right leg during the day and a compression garment at night. I have had numerous surgeries to attempt to resolve the effects of the lymphoedema, but none have been successful.

As a melanoma survivor, I am active in melanoma advocacy work. But it can get lonely and frustrating. I’m typically the only person of color in these circles, and there’s a lot of pale-skinned rhetoric that blurs and confuses the educational mission at hand and obliterates my experience. For example, people often just assume that I did acral lentiginous melanomaa type of skin cancer that, while rare, is slightly more common among black people than cutaneous melanoma.

There is a widespread and completely misleading belief that people with darker skin are not at risk for melanoma. There’s also a dangerous and wrong assumption that to get melanoma, you must have been a devoted tanner — something I’ve never been.

I’m not angry or bitter about these preconceptions; after all, I once believed it too. I don’t even resent my initial doctors, who were so indifferent to what turned out to be a deadly cancer. I can see why they weren’t concerned…otherwise I was young and healthy. I don’t hold a grudge.

But now that I’m a melanoma survivor, I’m determined to break the mold. I want people to understand that this type of cancer can affect anyone. We All have skin. We all have melanocyte cells. Some of us only come in darker shades.

I notice that many people are afraid to go get their moles and other suspicious skin lesions checked because they are afraid it might be something bad, like cancer. But early diagnosis can make all the difference. So please protect your skin when out in the sun and get your annual skin cancer checkups.

If detected early, melanoma may be treatable. I presented with stage 3 disease. I am not considered “cured”. They are “NED” or “no evidence of disease”. Because I have had late stage disease, there is always the possibility of recurrence, which is why I advocate early diagnosis and prevention.

This resource was created with support from Merck.