The appointment with my primary care physician (PCP) was for a routine physical. I expected a clean bill of health. After all, I’d had no issues and was having the physical as part of my New Year’s checklist, along with getting my car’s oil changed and switching out my furnace filter.
I told my doctor I was between gynaecologists because my former OB-GYN hadn’t been able to answer basic questions about the postmenopausal symptoms I’d been having. I asked for a referral, but given it would take four months or longer to see a new OB-GYN, my PCP suggested she could perform a pelvic exam, along with a pap smear and cervical swab, just to get me up-to-date on all routine tests.
As she completed the exam, she asked if I was aware of a large freckle on my labia just outside my vagina. Not being a contortionist, I wasn’t aware of this strangely shaped grey spot that my doctor photographed in order to show me.
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It looked like so many other age spots on my arms and legs that have popped up over the years as a result of days in the 1970s sun, before any of us used sunscreen. Still, my doctor suggested I see my dermatologist soon.
At the dermatologist’s office, she also showed little concern, thinking the spot was of no consequence, but should be examined nonetheless.
“I’m 99% sure it’s nothing,” were her exact words as she performed a biopsy of the freckle, slicing it from my skin and placing it in a vial for testing. Taking her cue, I’d nearly forgotten about the whole thing when I received a call on Tuesday morning a week later. Having lived through my late husband’s cancer experience, I knew that no doctor makes an “all clear” phone call at 8am.
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I realised, instead, she was going to tell me bad news. And she did.
The cells placed in the vial were melanoma, specifically, a labial or vulvar melanoma. Though I was familiar enough with melanoma to know that, as a pale redhead with previous sun exposure, I should be checked for them annually, I had no idea one could occur literally where “the sun don’t shine”.
My dermatologist explained that the freckle was in situ, meaning in the very beginning stage of becoming cancerous and only involved the top layer of skin. I would need surgery to remove it – something she wasn’t equipped to do.
The next two days were spent ascertaining the seriousness of my diagnosis and finding a surgeon willing to undertake this procedure, which would involve not only removal of the freckle, but also getting clear margins around it.
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In the case of a melanoma like this, the surgeon would seek one-centimeter margins, removing a fairly large portion of tissue in the shape of a football from a tight space with many nerve endings and highly sensitive skin. Because of the unusual location and delicacy of the surgery, I spent hours navigating the local healthcare system, as I attempted to find a surgeon who would accept the task.
Courtesy of Lori Tucker-Sullivan
My dermatologist referred me to gynaecology. In that department, especially without having an established relationship with a doctor, there was no one who would take my case. From there, I was sent to gynaecological oncology within the cancer centre. Several calls there also resulted in no doctors willing to move forward. While I wanted only for this cancerous lesion to be removed from my body, I was instead tossed from department to department as staff tried to determine who was best prepared to perform this unusual procedure.
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Finally, I was referred to a melanoma surgeon within the skin cancer department. A nurse phoned on day three and said the surgeon was well-practiced in these types of melanomas and would take my case. She could squeeze me in to meet with her a week later, and scheduled surgery for the week after that. I phoned my children and we made plans for my daughter to travel from Chicago to be with me for my appointment. We had a plan, and I felt better, but I didn’t realise how large a bullet I had just dodged.
Throughout my late husband’s three-year experience with head and neck squamous cell carcinoma, we tried to stay away from online searches and rabbit holes. His cancer was understood primarily to affect heavy smokers and drinkers, though he was neither. It was through our own and his doctor’s research that we learned his cancer was caused by the human papilloma virus or HPV. Having that knowledge provided his care team with a more specific approach, one that, though too late to save him, has allowed for better treatment protocols today than existed in 2009.
However, researching a cancer diagnosis can also lead to anxiety rather than calm or focus. Remembering this, I refrained from any internet searches until I met with my new cancer surgeon, a young woman whose matter-of-fact demeanour quickly calmed me. Once in her office, I peppered her with the questions I’d been too afraid to type into a search engine: How did this happen, why had I never heard of melanomas in this location, and, most importantly, what was the long-term prognosis? Her answers were surprising.
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Because of their location, labial melanomas are rarely caught at an early stage as mine was. Usually, according to my surgeon, they are not caught until they begin to cause discomfort, bleed or become a large mass. By that time, the melanoma has grown deep into the skin and excision, and removal is more difficult. And because of their location close to many lymph nodes, they can spread aggressively. I looked across the room at my daughter, who had lost her father to cancer when she was just 13, and noticed we had the same shocked look on our faces as we understood the situation: had my diagnosis come later, my outcome could have been completely different.
Nearly 40% of vulvar melanoma patients present with regional or metastatic disease (Stage III or Stage IV) compared to only 13.6% of cutaneous melanoma (those on more common areas like arms, legs, back, etc), which means vulvar melanoma is more likely to have spread via the lymph system by the time the patient presents to the doctor. A patient at Stage III has a five-year survival rate of about 48%. At Stage IV, that drops to a 25% rate of survival. Though vulvar or labial melanomas are rare, they most often occur in older women. And while I was beating myself up for my preteen suntanning, there is no definite connection between vulvar melanomas and sun exposure.
Though melanoma is the sixth most common cancer in women, only 0.2% of 100,000 women per year will be diagnosed with a labial melanoma, which primarily affects white, postmenopausal women in their 60s. The rarity of the diagnosis also means there’s little study of these cancers, though there also appears to be no connection between them and HPV or other STDs. As stated in a study by the National Institutes of Health (NIH), these melanomas are often asymptomatic and presentation is delayed by that and a lack of easy self-examination.
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Courtesy of Lori Tucker-Sullivan
Surgery took over an hour while I was under anaesthesia, and recovery took a few weeks, during which it was important to restrict movement and keep the wound very clean. Pain meds kept the discomfort at bay but didn’t address the lingering worries. In addition to my physical care, I also met with my therapist to continue processing how close I came to a much more serious situation and how I might turn my gratitude into advocating for prevention in others.
Because the freckle on my labia was caught when it was, I was told I have a less than 3% chance of recurrence and no further treatment. My surgeon will check me every six months, and my new dermatologist, who specialises in vulvar cancer, will see me every three months for two years. Provided nothing new is discovered, I’ll return to annual check-ups. But my prognosis is this good only because it was detected so early.
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When I returned for a follow-up appointment with my primary care doc, she reminded me that many postmenopausal women skip regular pelvic exams, or are confused about how often they are needed. Instead, they should speak with their doctors about the frequency, which is based on their personal health history, and whether they currently have symptoms.
Just as most dentists now check for oral cancer, doctors other than oncologists can help examine for vulvar cancer. A simple request to a gynaecologist to check the skin for unusual spots during your regular pelvic exam, or a request to the dermatologist to include the vulva during your annual skin checks, are easy ways to possibly detect cancer at an earlier stage.
At my primary care doctor’s office, we hugged, tearing up as the two of us realised what her attention and urging had prevented. Bringing my awareness to a seemingly innocuous spot in an unusual place prevented me from having a terrible and possibly fatal diagnosis. For that I am forever thankful.
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Lori Tucker-Sullivan is a writer and educator in Detroit. Her work has appeared in The New York Times, Washington Post, Salon, and others. Her book, “I Can’t Remember if I Cried: Rock Widows on Life, Love and Legacy,” was released in 2024 and profiles widows of her favorite musicians and what they taught her about grief. She is currently at work on a memoir of her marriage bookended by home renovation and her late husband’s cancer diagnosis.
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