Diagnosis Journey: A Routine Appointment Takes a Turn

I went to my primary care physician for what I thought was just a routine physical. I figured it would be a straightforward visit, especially since I hadn’t had any health issues lately. It felt like one of those checkbox things, you know—just like changing my car’s oil or swapping out the furnace filter.

During the appointment, I mentioned I was looking for a new gynecologist because my previous one hadn’t answered my questions about some postmenopausal symptoms I had. My doctor suggested performing a pelvic exam, along with a pap smear and cervical swab since it might take ages to get in with a new doctor.

As she conducted the exam, she pointed out a large freckle on my labia that I had been completely unaware of. I mean, it’s tough to see down there. My doctor snapped a photo for me to see, and honestly, it looked a lot like those age spots I’ve noticed popping up on my arms from all those sunny days in the ’70s, back when we blissfully ignored sunscreen. Still, she advised I should see a dermatologist.

When I visited the dermatologist, she appeared somewhat unconcerned, thinking it probably wasn’t serious, but decided to check it out anyway. “I’m 99% sure it’s nothing,” she said, as she did a biopsy by slicing the spot away and placing it in a vial for testing. Naturally, I didn’t think much of it until a week later when I got a call early one Tuesday morning. Knowing what I’d been through with my late husband and his cancer journey, I had a feeling it wasn’t good news.

And, well, it wasn’t. The biopsy results came back as melanoma, specifically labial or vulvar melanoma. I had known enough about melanoma to know I needed to stay on top of myself—especially being a pale redhead—but this particular location caught me completely off guard.

My dermatologist informed me that the freckle was in its earliest stage, known as in situ, meaning it hadn’t yet spread beyond the top layer of skin. However, I needed surgery to remove it, and my dermatologist didn’t have the capability to perform that procedure.

Over the next couple of days, I learned how serious my situation was. Finding a surgeon qualified to remove the melanoma while ensuring clear margins was tedious. The task involved not just excising the freckle, but cutting out surrounding tissue—specifically, a one-centimeter margin. It felt daunting, navigating the healthcare system in search of someone who could handle such a delicate job.

Eventually, I ended up with a melanoma surgeon who specialized in this sort of case. A nurse called to say the surgeon could see me the following week, and they scheduled my surgery for the week after. Once I informed my kids about the plan, I felt a bit of relief. I even invited my daughter to come from Chicago to be with me for the appointment. However, looking back, I wonder how close I came to something much worse.

During my late husband’s challenging battle with head and neck cancer, we tried to avoid deep dives into online research. His particular type of cancer was conventionally linked to heavy smoking and drinking, but he did neither, and through persistent inquiries, we ultimately found out it was caused by HPV. While that knowledge helped his care team make more informed choices, it was a difficult experience—one I wanted to avoid repeating.

So, I resisted the urge to Google my diagnosis until meeting with my new cancer surgeon. Her calm, straightforward manner reassured me, and once in her office, I asked her all the questions I had been too anxious to type into a search engine. How did this happen? Why hadn’t I heard about melanomas in this area? What about prognosis? Her responses were eye-opening.

She explained that labial melanomas are seldom detected early, as they typically remain unnoticed until they become painful or bleed. By that stage, they’ve usually penetrated deeper, making them harder to remove. Given their position near lymph nodes, they can spread quickly. Looking at my daughter, who had lost her father to cancer at just 13, we shared a moment of comprehension: had my diagnosis been delayed, the outcome might have been much graver.

Data suggests that nearly 40% of vulvar melanoma patients present with advanced disease, which is stark compared to the usual melanoma numbers. While vulvar melanomas are uncommon, they tend to be found in older women, and I can’t help but feel some guilt for my younger days spent in the sun. Yet, interestingly, there’s no confirmed link between sun exposure and vulvar melanoma.

Though melanoma ranks as the sixth most prevalent cancer in women, only a minuscule percentage—about 0.2% of 100,000 women annually—will be diagnosed with labial melanoma. This rarity means there’s limited research on the topic, and it seems there’s no connection to STDs, including HPV. A relevant study points out that these melanomas are frequently asymptomatic, and the lack of straightforward self-examination contributes to delayed identification.

The surgery took just over an hour under anesthesia, and recovery required a few weeks of careful movement and cleanliness to the wound site. Medications helped manage the discomfort, but I couldn’t shake the lingering anxiety. To process everything I had been through, I met with my therapist, aiming to channel my relief into advocacy for cancer prevention for others.

The fortunate thing is that since my freckle was caught early, my chance of recurrence remains under 3%, and I won’t need further treatment. My surgeon plans to monitor me biannually, while my new dermatologist, who is well-versed in vulvar cancer, will see me every three months for the next two years. If all goes well, I’ll return to annual check-ins. It’s incredible how this good prognosis stems solely from early detection.

When I went for a follow-up with my primary care doc, she emphasized how many postmenopausal women skip their regular pelvic exams, often not fully understanding how often they should occur. She encouraged women to initiate conversations with their doctors about how frequently these exams should take place, especially in light of their health history or current symptoms. Just like how dentists look for oral cancer, it’s possible for doctors outside of oncology to check for vulvar cancer too. A simple request to have gynecologists check for unusual skin spots during pelvic exams or asking dermatologists to examine the vulva during skin checks can provide options for earlier detection.

Once back at my primary care office, I hugged my doctor tightly, both of us teary-eyed as we grasped the weight of what her vigilance had averted. Her attention to an ordinary-looking spot in a peculiar location prevented what could have been a dreadful and possibly lethal diagnosis. I am incredibly grateful for that.