Update: Karla Van Kessel sadly passed away on Feb. 17, 2020 at the age of 43.
Karla Van Kessel had always gone for regular Pap tests and felt that she was well-informed about her reproductive health.
That’s why it came as a shock for the London, Ont., woman, who’s in her early 40s, when she was diagnosed with Stage 4 cervical cancer in 2018.
“I thought it was impossible for me to be diagnosed with this type of disease, because I was so compliant with Pap smears,” she said. “I did everything right and still ended up in a really terrible situation.”
In Canada, 1,350 women were diagnosed with cervical cancer in 2019 and an estimated 410 will die from it, according to the Canadian Cancer Society.
Cervical cancer is the most preventable cancer in Canada, according to Shawn Chirrey, a senior analyst at the organization.
Their data shows that routine screenings can catch precancerous lesions and treat them before they turn into cervical cancer.
Incidents of cervical cancer decreased by 3.3 per cent per year from 2010 to 2015, which the organization attributes to increased cancer screenings and the HPV vaccine, which lowers the risk of cervical cancer, as the virus can cause it.
But there are gaps in accessing these tests and understanding how frequently to get them, along with issues like practitioner error, which is what impacted Van Kessel’s diagnosis, she told Global News. She also spoke to the CBC last year about why doctors missed cancer signs in her Pap tests.
A Pap test she had was abnormal and she should have been referred to a doctor, but she wasn’t, which delayed her diagnosis by six to eight months, she said.
“It was quite a lot because it had spread quite a bit in that time,” she said, adding she was able to review her own records to see that it been noted that she needed a biopsy immediately, but she was never sent for one.
In the months prior to her diagnosis, she had what are known symptoms of cervical cancer like abnormal bleeding between periods and pain during intercourse. Signs also include pelvic pain, painful urination and bleeding after menopause. But Van Kessel was unaware those symptoms were associated with cancer, and she thought her Pap tests were fine.
She advises those with female reproductive organs to keep up to date with their Pap tests, ensure they have gotten the HPV vaccination, and access their test results.
“Women have always had a challenge being heard in health care and have even more challenges advocating for themselves, because women tend to be quite compliant and don’t want to raise a fuss,” she said. “I would tell women to take charge of their health.”
Work closely with your family doctor and get your hands on your results, she explained.
Van Kessel is now undergoing experimental treatment in the U.S. and is hopeful it will allow her to beat the disease and continue life with her husband and two young sons.
More than 70 per cent of cervical cancer cases for women aged 18-39 in Canada were caught at Stage 1 due to detection from cancer screening programs and tests like Pap smears, according to the Canadian Cancer Society.
But in addition to access to information about screenings and tests, access to doctors and cost can also be factors. In Ontario, HPV tests cost around $100 and groups like Cancer Care Ontario are working to have the test covered by OHIP.
For those who didn’t receive the HPV vaccine in school, it can cost between $300 and $500 depending on if you have private health care coverage.
Access to cancer screenings for marginalized people, including Indigenous people, is also an issue. Cancer Care Ontario is working to address issues like lack of access to care, culturally competent health care providers and providers in general.
Black women may be under-screened for cervical and breast cancer and there is a lack of health research on this issue, according to a literature review from the University of Toronto. This could lead to worse outcomes from these diseases, according to a previous report by Global News.
Another barrier to receiving care around cervical cancer prevention is the stigma associated with this form of cancer, as it’s related to women’s sexual health, said Denise Corbin, an early detection co-ordinator at the Saskatchewan Cancer Agency.
Corbin’s role involves engaging with the public in Saskatchewan to better inform them about cervical cancer screenings and early detection.
“It’s a topic that is touchy to talk about because what causes cervical cancer in nearly all cases is the HPV virus,” she said. “So seeing as HPV is a sexually transmitted infection, there’s not a lot of people that want to talk about it.”
Most people who are sexually active will have an HPV infection at some point in their life. In most cases, it will go away, but sometimes it will not, which can lead to cancer, according to the Canadian Cancer Society.
Two strains of HPV, HPV16 and HPV18, can cause cells to change or become abnormal, which causes 70 per cent of all cervical cancers, according to the organization. But men are also encouraged to receive the vaccine as HPV also causes anal, penile, mouth and throat cancers.
There is shame associated with women talking about being sexually active and their bodies, and many aren’t comfortable doing so with a male doctor, said Corbin.
“You’ve got stigmas of, ‘I’m not supposed to talk about it’ or ‘I’m afraid to talk about it,’” said Corbin. “And a lot of people think, ‘Oh, I had a Pap test, I’m good.’”
Getting the HPV vaccine along with cancer screenings is important to do along with a Pap test and monitoring your body for unusual symptoms, she said.
Recommendations for when to get a Pap test, which screens for cervical cancer, are to start at age 21 and get one every three years after that. However, in 2013, the Canadian Medical Association Journal published new guidelines that recommend tests start at age 25.
The main goal of the Saskatchewan Cancer Agency’s outreach program is to help women be comfortable with their own bodies and talk about their health, so they feel more inclined to get tested, said Corbin.
“We just sit down and talk about some of the fears … what they’re feeling anxious about,” she said, adding that the Pap test is invasive and uncomfortable, which can also be a deterrent.
Free HPV vaccination in schools has made a big difference in tackling cervical cancer rates, said Dr. Sarah Ferguson, a gynecologic-oncologist at the Princess Margaret Cancer Centre in Toronto.
But accessibility continues to be an issue in health care, as costs continue to be barriers to care, said Ferguson.
“We need to make sure that women are being screened and to maximize our HPV vaccinations,” she said, adding she is pleased to see rates of cervical cancer decrease in the country.
“We can’t be complacent, but it is a success story,” she said. “It’s important to… advocate for ourselves to make sure our screenings are done every three years to prevent cancer.”