Unheard. Unserved: Misdiagnosed for years, terminal cancer patient says more access could save lives – Halifax

This is the latest installment in the Global News series entitled Unheard of. Unserviced. nautical Women's health In crisis.

In our previous stories, we introduced you to a woman who I struggled for many years to get diagnosed with PCOS, woman refused surgery for breast cancer due to BMI, and a woman from Nova Scotia who says she felt dismissed in the emergency room when she experienced serious complications from a medication abortion..

Mandy Wood is making the most of the time doctors say she has left.

The 45-year-old mother of two says the hardest aspect of her vulvar cancer diagnosis was coming to terms with leaving behind her eight-year-old twins Adam and Olivia, who are the center of her world.

“I won’t see what my children will become,” Wood says, wiping tears from her eyes. “Or help them cope with difficult things, like adolescence.”

In 2023, Wood realized something was wrong. A lumpy, cauliflower-like lump appeared right inside my vagina that was not there before.

She says her family doctor initially 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 has changed.

“So he then referred me to a women's clinic in Truro, but there was a two-year wait…” explains Wood, adding that she was dealing with other medical issues that took priority at the time.

“A lot of us do this as parents. We let things happen. We're busy with work, we're busy with kids. And it took a backseat, and I should have kept it in the forefront.”

When family physician Wood retired in the summer of 2024, she relied on urgent care centers and the local emergency department at Colchester East Hants Medical Center. But sitting in the waiting room for a long time became unbearable, and she says she often left without seeing a doctor.

“I didn’t know it at the time, but I was literally sitting on a ruck,” Wood says. “Which last fall spread to the inside of the labia. So it was a much larger mass.”

Wood recalls there was severe pain and bleeding from the vulva area.

“It was like having a moderate to heavy period every day, but for months,” she says.

Every time she went to the doctor that fall, Wood said, she was re-prescribed the same antibiotics, which proved ineffective. It’s just that in December 2024, she turned to the right doctor, who immediately suspected that something more serious was going on.

“I had a biopsy the next day and on New Year’s Eve they confirmed it was vulvar cancer,” Wood says.

When doctors first diagnosed Wood with vulvar cancer, she was at stage 3.

But after nearly a year of treatment, she entered stage four and was declared incurable, with only months to live. If she had had better access to medical care, Wood believes her prognosis might have been different.

“I've been misdiagnosed for over a year, and I try not to dwell on it too much… you know, what could have been,” Wood says, adding that once she got into the system, the care was great—it was just hard to get.

“I think access to gynecological care should be easier because a lot can happen in two years. And it's a ridiculous wait time.”

According to her, it is also necessary to emphasize the importance of specialists.

“Your Pap test will not detect signs of vulvar cancer,” says Wood. “I don't blame my family doctor and I don't blame the doctors I've seen at urgent care centers… They may have never heard of vulvar cancer… I think we need more awareness. We need to stop being so afraid to talk about certain parts of the body simply because they're under a bathing suit.”

Dr. Lilian Guien is a gynecologic oncologist at Sunnybrook Health Sciences Center in Toronto. She works at the Odette Cancer Center as a team leader for the gynecologic cancer center.

Gien has no connection to Wood's case, but says shyness is common with vulvar cancer.

“The cancer is located in a very sensitive area and also in a place that many women may not feel comfortable talking about or telling their doctor, especially if most of them are in the older age group,” she says.

“Secondly, for many family physicians, if a pelvic exam is not part of the annual physical, then it may be more difficult to determine what is normal and what is abnormal.”

She says if doctors aren't comfortable doing a thorough exam or can't recognize the signs of gynecologic cancer, they should refer their patients to a general gynecologist or a gynecologic cancer specialist like herself.

But when it comes to making an appointment with a gynecologist and oncologist in Nova Scotia, wait times can be long.

According to Nova Scotia Health, “Wait times vary depending on how patients are triaged. Some conditions (such as suspected cancer) are referred more urgently. If cancer is a possibility, the patient is usually seen within four weeks for an exam and biopsy. For suspected cancer, the wait is often less than two weeks. While there are still cases where patients wait two years to receive gynecological care, longer waits are often for non-urgent issues.”

It adds: “At some other gynecology clinics in Nova Scotia, wait times have increased due to several factors, including an aging population which has led to higher rates of cancer and benign conditions such as prolapse and urinary incontinence, general population growth resulting in more women requiring care, increased referrals from primary care and increased awareness of conditions such as menopause and endometriosis, which have consequently led to increased demand for patients and more directions.”

While wait times for gynecology and oncology services have not increased in recent years, health authorities say they are taking steps to reduce wait times and improve access to care by adding more gynecologists to medical teams across the province in conjunction with the Ministry of Health.

“I want to provide for women throughout the province; we know this is a serious problem,” Nova Scotia Health Minister Michelle Thompson told reporters at an Oct. 23 cabinet meeting.

“We have increased the number of gynecologists not only in the capital but throughout the province, so the recruitment efforts have been successful,” Thompson said.

“But also investing in infrastructure, meaning the necessary equipment. A new pelvic office opened at Dartmouth General… We're also looking at ways to support primary care providers to provide gynecology care in their offices and provide support for referrals.”

In her statement, Thompson adds that she was sorry to hear about Wood's experience and it was clear that the health care system did not serve her well as she sought answers and help.

Vulvar cancer is an extremely rare tumor, accounting for only five percent of gynecologic cancers, Gien said.

“In terms of population size, it is present in 2.6 cases per 100,000 women in the U.S., and in Ontario, in studies done over a 10-year period, we found approximately 1,200 cases over 10 years,” says Gien. “So it's really only 100 to 120 cases a year.”

Vulvar cancer occurs primarily in older women, she said, with the average age range being 69 to 70, but Gien says cases also occur in older and younger women.

At 45, Wood falls into the younger category of patients, but Gien says she has seen patients in their 20s and 30s.

“There are two different types of vulvar cancer,” says Gien. “One is in the older population. It's often not associated with HPV or human papillomavirus and can be associated with a number of skin conditions that make you more susceptible to vulvar cancer,” she explains.

“And on the other hand, there is HPV-related vulvar cancer, which is very similar to the risk factors for cervical cancer, which typically occurs in younger women.”

Exposure to HPV is one risk factor, but others include a weakened immune system or smoking, Gin says, adding that HPV-related cancers tend to appear in the younger age group, but not in all cases. Wood's cancer, for example, was not associated with HPV.

Like the causes, symptoms of vulvar cancer vary. It usually first appears as itching around the vulva, but patients may notice other early signs.

“They may feel like there is a small lump on the skin, and if the lump gets larger, it can lead to bleeding, pain, or discharge,” says Gyen. “It's essentially like skin cancer on the external genitalia.”

And early detection of these tumors is essential for recovery.

“The five-year survival rate for a patient with early-stage vulvar cancer is about 90 percent, not after the cancer has spread,” says Gyen. “It first spreads to the lymph nodes located in the groin area, then the five-year survival rate drops to 50 percent.”

Early treatments for vulvar cancer include surgery, which removes the vulvar cancer itself along with the first tender lymph nodes, Guien said.

If surgery is not possible, the main treatment for vulvar cancer is radiation therapy, she explains, often in combination with chemotherapy. But once cancer appears in a distant area of ​​the body beyond the lymph nodes and spreads to other organ systems, the disease is considered incurable.

In addition to spending time with her family, Wood works to raise awareness of vulvar cancer in hopes of saving others from a similar fate.

“They gave me terrible lemons. But let's try to make some lemonade out of this. I need something to come out of this, something positive. Because I can't just go through this,” Wood says.

“Unfortunately for me, it's a terminal diagnosis. But maybe someone else will get it sooner, and maybe they'll have a much more positive outcome than I did.”