Always Put Your Health First
- Louise Garcia, 43, had just given birth at age 27 when she was diagnosed with vulvar cancer, a rare gynecological cancer, which wound up coming back 15 years later, presenting different symptoms.
- The London-based pilates instructor is sharing her story to raise awareness about the symptoms of vulvar cancer, and urges women to not be embarrassed — your health is more important.
- Vulvar cancer occurs when abnormal cells form on the vulva, which is a part of the external female genitalia. Symptoms of vulvar cancer may include: a red, pink, or white lump or bump , itching, pain, burning, and thickness of the skin of the vulva.
The London-based pilates instructor had initially felt an uncomfortable spot on her vulva, which is a part of the external female genitalia.
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Louise is sharing her story through the Lady Garden Foundation, which raises awareness on gynecological cancers, so that more women will know what to look out for.
An ‘Aggressive’ Vulvar Cancer Diagnosis
After her discovery, Louise got in within six weeks of finding the strange spot, which she felt very “fortunate” to have found.
“It was an ulcerated blackened area with burned-looking edges,” she recalled, “and when I went to the doctor, she told me straight away: ‘That doesn’t look right. We need to get it checked out.’ ”
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After a biopsy, Louise learned it was a “very aggressive” vulvar cancer, which is more common in older women, “so it was a complete surprise,” she said.
Surgery in a Sensitive Area
Louise then had to undergo surgery right away and wound up having the left part of her labia removed. However, after the surgery, her medical team shared that they weren’t “confident” enough that they got all the cancer cells, so they also removed her lymph nodes from both sides of her groin area. Thankfully, the nodes were clear. Louise learned she did not have to have further treatment such as chemotherapy and radiation.
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Though she was ecstatic that she was now cancer-free, her recovery was very hard. Not only had she just given birth, but now she was leaking lymph fluid. While tending to her little one, she felt her wound open up. “I had a coin-sized gaping hole in the top of my thigh. It got infected, and it was really nasty.”
Louise wound up back in the hospital and had to be treated for an infection. “I’ve still got quite limited nerve sensation down my right thigh because of that infection.”
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Again, Louise reminded herself she no longer had cancer, so of course, that was what mattered most to her and her family.
But it’s also important not to downplay the emotional and physical effects of cancer treatment, especially when surgery has altered parts of your body. In this case, an even more sensitive area, and after dealing with body changes from childbirth as well.
Another Vulvar Cancer Diagnosis 15 Years Later
Because of her cancer and everything she went through, Louise said she was “heavily monitored” in the years following her diagnosis.
15 years later, she was devastated to be diagnosed a second time with vulvar cancer. This time, however, her symptoms presented differently.
“The first episode looked like it was ‘burning’ inway, which is why it was so aggressive—that form can go inside your body like a root and travel,” she said. “The more recent episode was growing outward like a weed, so you could get it more easily.”
“It was more like skin growing on skin,” she described, explaining that the scariest part was not knowing if it had spread or not, which many cancer survivors can relate with.
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“I was told I had the cancer back, but I hadn’t had any scans or results. Of everything in my cancer journey, the not-knowing over that Christmas—and all the intrusive thoughts that come with it—was the hardest thing to deal with.”
There were two areas that the cancer was found. “One [spot] was growing right over my clitoris and the other was just to the left.”
Her surgeon “created a horseshoe incision over the sides, the top around the clitoris, and down a little bit on the other side.”
“A lot of the inner part has gone, but he built up a little bit of tissue at the top to make it look like a clitoral hood. He did a really good job.”
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This was just last year in 2023. Now a two-time survivor, Louise leaves some parting words for the women out their to “follow your instincts.”
‘Listen to That Inner Voice’
“If something’s not quite right, listen to that inner voice,” Louise said. “You’ve got nothing to lose to go and get checked.”
Continuing, she urged, “Don’t be embarrassed, and even if you are, don’t let that stop you from going — that feeling is fleeting and your health is more important.”
“Treat yourself to a vulval investigation, then get yourself a coffee and cake after,” she said, cheekily adding, “It’s an important part of self-care.”
Learning More About Vulvar Cancer
Vulvar cancer is a gynecological cancer of the vulva, and it’s relatively rare.
According to the American Cancer Society, vulvar cancer accounts for about 6% of cancers of the female reproductive organs and 0.7% of all cancers in women.
In the United States, women have a 1 in 333 chance of developing vulvar cancer at some point during their life. In 2022, about 6,330 women will be diagnosed with vulvar cancer, and 1,560 women are expected to die from this cancer.
Vulvar Cancer: Signs & Symptoms
If your vulva has changed color, it could be a sign of a specific type of vulvar cancer.
The specific type of disease that causes a discolored vulva is called invasive squamous cell cancer of the vulva, and according to ACS, some of the symptoms include:
- An area on the vulva that looks different from normal; it could be lighter or darker than the normal skin around it, or look red or pink.
- A bump or lump, which could be red, pink, or white and could have a wart-like or raw surface or feel rough or thick
- Thickening of the skin of the vulva
- Itching
- Pain or burning
- Bleeding or discharge not related to the normal menstrual period
- An open sore (especially if it lasts for a month or more)
Types of Vulvar Cancer
In addition to invasive squamous cell cancer of the vulva, there are other types of vulvar cancer, which include:
Adenocarcinoma
Cancer that starts in gland cells is called adenocarcinoma.
This type of vulvar cancer is uncommon. In fact, only about 8 of every 100 vulvar cancers are adenocarcinomas, according to ACS.
Most of the time, vulvar adenocarcinomas start in cells of the Bartholin glands. These glands are found just inside the opening of the vagina.
However, it should be noted that Bartholin gland cancer is easily mistaken for a cyst, which is a build-up of fluid in the gland, so it’s unfortunately rather common for it to take awhile to get an accurate diagnosis.
Melanoma
Melanoma is the most deadly type of skin cancer that starts in the pigment-producing cells that give skin color.
While this type of cancer is much more likely to appear on sun-exposed areas of the skin, it can start in other areas, such as the vulva.
This type of vulvar cancer is rare, according to ACS, making up about 6 of every 100 vulvar cancers even less than vulvar adenocarcinomas.
Sarcoma
Sarcoma cancers start in the cells of your bones, muscles or connective tissue.
This type of vulvar cancer is even more rare than the two aforementioned types, making up less than 2 of every 100 cases.
Unlike other cancers of the vulva, vulvar sarcomas can occur in females at any age, including in childhood, according to ACS.
Basal Cell Carcinoma
Basal cell carcinoma, the most common type of skin cancer, is more often found on sun-exposed areas of the skin.
Unlike melanoma, it’s very unlikely to develop on a woman’s vulva, but it can happen, making this type of vulvar cancer the most rare.
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