'It could happen to anyone': This mom recorded her own eulogy to advocate for better cervical cancer screening
Karla Van Kessel died of complications caused by cervical cancer on Feb. 17
Until the day she died, Karla Van Kessel fought for improved measures to prevent cervical cancer, and thanks to her efforts, changes to screening and how women are notified of test results could soon be a reality for some.
The London, Ont., woman died of complications caused by cervical cancer on Feb. 17 at the age of 43.
"Please don't refer to me as having lost the battle because I believe I won at life," she said in a memorial recording. She recorded her own eulogy three days before her death.
"I've had an incredible life," she said. "I lived the first half of my life as a sedentary extrovert and the second half of my life as an active and adventurous introvert. Both gave me access to the joys and sorrows of this world."
Last March on CBC Radio's White Coat, Black Art with Dr. Brian Goldman, Van Kessel shared how at the start of 2017, her family doctor didn't make the connection to cervical cancer despite her painful pelvic symptoms and abnormal bleeding.
A routine Pap smear done by her GP that summer suggested possible cervical cancer. But the GP mistakenly thought the finding was less serious.
Van Kessel complained to the College of Physicians and Surgeons of Ontario about her family doctor and the first gynecologist who saw her. The College reprimanded the GP and found that the gynecologist had acted appropriately.
It wasn't until Van Kessel was referred to a second gynecologist in February 2018 that she got a biopsy and diagnosis.
She knew it was serious when the doctor at the biopsy asked her if she was feeling well. When she listed her symptoms, "his eyes widened and his jaw dropped," she said.
"My world stopped," she recalled to Goldman. "I felt this this horrible yet satisfying feeling of vindication because I knew all along, and it was an awful feeling, but I knew all along and nobody was listening."
Cervical cancer is the fourth leading cause of cancer in women. With regular Pap smears, it's also the most preventable.
Until her death, Van Kessel campaigned to remind people that it's possible to have regular Paps and still be diagnosed with advanced cervix cancer.
In such cases, gynecologists perform a colposcopy, a procedure that uses a lighted magnifying instrument that allows a much more detailed look at the cervix, and to get a biopsy to determine what follow-up tests might be needed.
"We need to be treated like people first. Like mothers and fathers and spouses and professionals," Van Kessel said in her eulogy. "We need to be heard."
Van Kessel, a college library director, completed the Ironman, Boston Marathon and other elite competitions. She was diligent about receiving routine Pap smears.
In her final days, Van Kessel continued to advocate for stronger prevention and testing.
"The same health-care system that failed me eventually gave me compassion, hope and outstanding care," she said in thanking the London Regional Cancer Program.
Specifically, her family continues her advocacy work for:
- More accurate screening of cervical cancer.
- HPV testing, another way to catch cervical cancer in its early stages by looking for DNA from high-risk types of the human papillomavirus (HPV) directly.
- Patient access to clinical records, including sharing Pap results directly with them rather than sending the results to doctors or nurse practitioners only.
- HPV vaccination for eligible adults in Ontario without coverage to prevent cancer.
In a statement to CBC, Ontario Health, formerly Cancer Care Ontario, said it will implement HPV testing and revise the letters it sends to people about recommended next steps after Pap results.
But on the prevention front, widower Rob Whitmill said when he requested HPV vaccination this summer, he was shocked to learn people often pay $300 for a shot that he received for $5.
"Unfortunately in its current state we're actually doing a disservice to a large percentage of the population based on their income and their ability to have good benefits," Whitmill said.
Shared goal of better screening
Key gaps remain. Dr. Craig Earle, vice president with Canadian Partnership Against Cancer, said Van Kessel's goals align with the group's pillars on eliminating cervical cancer by 2040.
The federally funded partnership works with provincial cancer agencies to switch to HPV testing of the virus directly. Clinicians in Ontario, Quebec and Nova Scotia currently use the technology to help with diagnosis.
Earle said the group also aims to standardize organized screening programs so abnormal results don't rely on a single clinician to interpret and potentially miss.
Vaccination is another pillar.
Currently, all provinces cover HPV vaccination for school-aged children. The vaccination rate among adolescents overall is about 80 per cent, Earle said, varying by jurisdiction and demographics. The group aims to vaccinate 90 per cent of 17-year-olds by 2025.
Earle said the shots also help protect against about half of head and neck cancers as well as anal and vulvar cancers. But to achieve vaccination goals, cultural barriers to HPV vaccination need to come down.
Similarly, about 80 per cent of those eligible receive Pap screening. Rates fall as low as 50 per cent in some rural, LGBTQ2 and other under-served communities.
"It's not good enough to say 80 per cent," Earle said. "That 20 per cent is important to reach."
Why Karla's story struck a chord
Van Kessel followed such moves in cervical cancer care closely as part of her efforts to raise awareness.
Throughout Van Kessel's cancer journey, she shared grateful posts on social media on the difficult ups and downs of treatment — physically and emotionally. Karla endured surgery and tried experimental treatments to live as long as possible with her husband and sons, Ben, 9 ½, and Tom, 8.
Sister Monique Van Kessel compiled and expanded on Karla's posts, which she often signed off "With love, Karla," into a book. The book is titled To Cancer, With Love: My Journey with Terminal Cancer and is intended to inspire and inform.
"I think her case struck a chord and I think it's purely because I think people realized it could happen to anyone," Whitmill said.
In addition to sharing details of her experience with the show last year, other media outlets also picked up on Van Kessel's story, including a recent Toronto Star piece about her legacy.
In her interviews and writing, Van Kessel encouraged "deep conversations" about the pain of cancer for the patient and their close relatives, Whitmill said.
She often expressed gratitude and eventually accepted death while encouraging self-reflection among the medical community, he added.
Proceeds from sales of the book go to the Karla Van Kessel HPV Testing and Vaccination Fund at St. Joseph's Healthcare Foundation London.