This is the latest instalment of a Global News series called Unheard. Unserved. Maritime Women’s Health In Crisis.
In our previous stories, we introduced you to a woman who struggled for years to get a PCOS diagnosis, a woman denied breast cancer surgery due to BMI, and a Nova Scotia woman who says she felt dismissed at the ER when she experienced extreme complications from a medication abortion.
Mandy Wood is making the most out of the time doctors say she has left.
The 45-year-old mother of two says the hardest aspect of her vulvar cancer diagnosis has been coming to terms with leaving behind her eight-year-old twins, Adam and Olivia, who are the centre of her world.
“I’m not gonna get to see what my babies become,” Wood says, wiping tears from her eyes. “Or help them through navigating tough things like their teen years.”
In 2023, Wood realized something wasn’t right. There was a bumpy, cauliflower-like lump just inside her vaginal opening that hadn’t been there before.
She says her family doctor originally diagnosed her with herpes and prescribed her antibiotics. When that didn’t work, she says he treated her for what he suspected was a persistent yeast infection. But nothing changed.
“So, then he referred me to the women’s clinic in Truro, but there was a two-year wait …” Wood explains, adding she was dealing with other medical issues at the time, which took priority.
“A lot of us do that as parents. We let things slide. We’re busy with work, we’re busy with the kids. And it went on the back burner, and I should have kept it on the front.”
When Wood’s family practitioner retired in the summer of 2024, she began relying on urgent care centres and her local emergency department at the Colchester East Hants Health Centre. But sitting for long periods of time in a waiting room became unbearable, and she says she would often leave before seeing a doctor.
“I didn’t know at the time, but I was literally sitting on the cancer,” Wood says. “Which, by last fall, had spread up the inside of the labia as well. And so, it was a much larger mass.”
Wood recalls there was a lot of pain and bleeding from the vulva area.
“It was like having a moderate to heavy period every day but for months,” she says.
Whenever she made it through to see a health-care provider that fall, Wood says she was re-prescribed the same antibiotics that proved ineffective. She just happened to see the right doctor in December 2024, who instantly suspected something more serious was going on.
“I was biopsied the next day, and then it was confirmed it was vulvar cancer on New Year’s Eve,” Wood says.
When doctors first diagnosed Wood with vulvar cancer, she was at Stage 3.
But nearly a year of treatments later, she has progressed to Stage 4 and has been deemed terminal with only months left to live. Had she had better access to care, Wood feels her prognosis may have been different.
“I went misdiagnosed for over a year, which I try not to dwell on too much … you know, what could have been,” Wood says, adding once she got into the system, the care was great — it was just hard to get in the first place.
“I think it needs to be easier to access gynecological care because two years, a lot can happen in two years. And that’s a ridiculous wait time.”
She says the importance of specialists also needs to be stressed.
“Your PAP test isn’t going to pick up signs of vulvar cancer,” Wood says. “I don’t fault my family doctor, and I don’t fault doctors I saw in the urgent treatment centres … Maybe they’d never heard of vulvar cancer … I think we need more awareness. We need to stop being so afraid to talk about certain body parts simply because they’re under the bathing suit.”
Dr. Lilian Gien is a gynecologic oncologist at Toronto’s Sunnybrook Health Sciences Centre. She works in the Odette Cancer Centre as the gynecologic cancer site group lead.
Gien has no connection to Wood’s case but says self-consciousness with vulvar cancer is common.
“The cancer is located in an area that is very sensitive and also a place that perhaps a lot of women don’t feel comfortable talking about or bringing up to their doctor, especially if most of them are in an elderly age group,” she says.
“Second of all, for a lot of family physicians, if the pelvic examination is not something that is routinely part of a yearly examination, then perhaps being able to identify what is normal and not normal becomes more difficult.”
She says if doctors don’t feel comfortable performing a thorough examination or are unable to recognize the signs of gynecologic cancers, they should refer their patients to a general gynecologist or gynecologic cancer specialist, like herself.
But when it comes to accessing gynecology and oncology appointments in Nova Scotia, wait times can be lengthy.
According to Nova Scotia Health, “wait times vary depending on how patients are triaged. Some conditions (for example, suspected cancer) are routed more urgently. If cancer is possible, the patient is typically seen within four weeks for assessment and biopsy. If cancer is suspected, the wait is often less than two weeks. While there are still cases where patients are waiting two years to be seen for gynecological care, the longer waits are often for non-urgent concerns.”
It adds, “some other gynecological wait times in Nova Scotia have increased due to several factors, including an aging population that has led to higher rates of cancer and benign conditions such as prolapse and incontinence, overall population growth resulting in more women requiring care, increased referrals from primary care, and greater awareness of conditions like menopause and endometriosis, which has appropriately led to higher patient demand and more referrals.”
Although wait times for gynecology-oncology have not increased in recent years, the health authority says it is taking steps to decrease wait times and improve access to care by adding additional gynecologists to health-care teams across the province in conjunction with the Department of Health.
“I want to ensure women across the province; we know that this is a significant issue,” Nova Scotia Health Minister Michelle Thompson told reporters at the Oct. 23 cabinet media availability.
“We’ve increased the number of gynecologists, not only in capital, but also across the province, so those recruitment efforts have been successful,” Thompson said.
“But also, investment in infrastructure — so, equipment that’s required. There’s been a new pelvic suite that’s opened at Dartmouth General …We are also looking at ways we can support primary care providers in providing gynecological care in their offices and making sure they have supports for referrals.”
In a statement, Thompson adds she was sorry to hear about Wood’s experience and that it was clear the health-care system did not serve her well as she sought answers and care.
Vulvar cancer is an extremely rare tumour, Gien says, making up only five per cent of gynecologic cancers.
“In context of population numbers, it’s present in 2.6 per 100,000 women in the U.S., and in Ontario, in studies that have been done over 10-year periods, we’ve identified approximately 1,200 cases over 10 years,” Gien says. “So really that’s only 100 to 120 cases a year.”
Vulvar cancer occurs primarily in older women, with the average age range being 69 to 70 years old, she says, but Gien says cases also exist in women who are older and younger than that.
At 45, Wood falls into the younger category of patients, but Gien says she has seen patients in their late 20s to early 30s.
“There’s two different types of vulvar cancer,” Gien says. “One is in the older population. It is often non-HPV related, or non-human papillomavirus related, and can be associated with a number of skin disorders that make you more susceptible to having vulvar cancer,” she explains.
“And on the other side, there is HPV-associated vulvar cancer, which is very similar to the risk factors for cervix cancer, which tends to happen in younger women.”
Exposure to HPV is one of the risk factors, but others include being immunocompromised or a smoker, Gien says, adding, HPV-associated cancer typically presents in the younger age group, but not in every case. Wood’s cancer, for example, was non-HPV related.
As with causes, the symptoms of vulvar cancer vary. Typically, it will initially present as itchiness around the vulva, but patients may notice other early signs as well.
“They might feel like there’s a small lump that is there on the skin, and if that growth becomes larger, then that could potentially bleed, cause pain, or have some discharge,” Gien says. “It’s basically like having a skin cancer on the external genitalia.”
And detecting these tumours early is essential to recovery.
“The survival for a patient who has early-stage vulvar cancer, (that) five-year survival rate is quoted around 90 per cent, as opposed to once the cancer spreads,” Gien says. “The first place it spreads would be to the lymph nodes located in the groin area, then the five-year survival rate decreases down to 50 per cent.”
Early treatments for vulvar cancer include surgery, in which the vulvar cancer itself is removed along with the first lymph nodes that are susceptible, Gien says.
If surgery is not an option, the primary treatment for vulvar cancer would be radiation, she explains, often in combination with chemotherapy. But once the cancer shows up in a distant area of the body beyond the lymph nodes and spreads into other organ systems, the disease is considered incurable.
Aside from spending time with her family, Wood’s focus is to raise awareness about vulvar cancer in the hope of saving others from a similar fate.
“I’ve been given some terrible lemons. But let’s try and make a little lemonade out of it. I need there to be something to come out of this, something positive. Because I can’t be going through all of this just for nothing,” Wood says.
“Unfortunately for me, it’s a terminal diagnosis. But maybe somebody else will catch it earlier, and maybe they’ll have a much more positive outcome than me.”
