The stories of two women who are cancer previvors. Both Jordyn and Anne had family members with breast cancer. Both got genetic testing and found out they too carried genes that gave them very high odds of getting cancer too. Both of these women decided to deal with the risk preemptively by having surgery.
It was a call Anne Jisca Meyer had been dreading.
Her sister Emm had breast cancer and underwent genetic testing to determine if it was related to a hereditary mutation.
She called Jisca Meyer to let her know that she had tested positive for PALB2, a genetic mutation that puts individuals at a higher risk for breast cancer.
“Even though that was not my result, it was hers, it was opening the door to 50 per cent chance that I have it as well. I already had five kids and I wish I’d known this before having five kids,” said the stay-at-home mom from her home in Red River, Ont.
Jisca Meyer would later test positive for PALB2, marking the beginning of her journey as a “previvor.”
Anne Jisca Meyer chose to have a double mastectomy after finding out she’s a carrier of the PALB2 gene mutation, which puts her at a higher risk of breast cancer. (Submitted by Anne Jisca Meyer)
It’s a term that is increasingly used by those with a hereditary gene mutation that increases the risk of cancer but who do not have cancer right now. Many previvors told CBC News that finding out you have an increased risk of a certain type or types of cancer can be difficult.
Lauralyn Johnston, who lives in Toronto, remembers receiving the call from the genetic counsellor.
They confirmed she had an 87 per cent chance of breast cancer within the next five years and a 50 per cent chance of ovarian cancer over her lifetime due to her inherited variant of the BRCA1 gene mutation.
“All of a sudden you’re then in this place of ‘I don’t have cancer right now, but I could anytime,'” she said.
Some opt for preventive surgery, while others may choose yearly screenings instead.
They don’t represent the majority of cancer cases; less than one in 10 cancers are caused by a gene mutation passed down in a family, according to B.C. Cancer.
But the demand for genetic testing is high and growing. Wait times for genetic testing vary drastically among the provinces, with genetic counsellors saying some lower-risk individuals can wait up to three years or more for results.
“The reality is our public system is not able to meet the demand,” said Laura Palma, a certified genetic counsellor at McGill University Health Centre (MUHC) in Montreal in an interview with White Coat, Black Art host Dr. Brian Goldman.
No going back
Since she was a child, Jordyn Playne, 28, knew she could have a genetic mutation that puts her at a higher risk for breast and ovarian cancer.
Jordyn Playne (pictured) had a double mastectomy with reconstruction when she was 26 years old. She had the procedure after finding out she was a carrier of BRCA2. (Maci Copeland)
Her mother had died of breast cancer when Playne was just two years old and after her death, Playne’s father told her and her brother about the possibility of having a genetic mutation.
Her mother was never tested, but Playne has seven aunts on her mother’s side, five of whom have tested positive for BRCA2, a genetic mutation that puts individuals at higher risk of breast and ovarian cancer.
So when it came time to get life insurance, Playne and her fiancé decided that she should get genetic testing done.
It was when she was on her lunch break at work that she got the call from a genetic counsellor informing her that she, too, carried the BRCA2 mutation.
She knew almost right away that she wanted to have a prophylactic double mastectomy.
“I wanted to kick cancer’s butt before it ever had a chance to kick mine,” Playne said from her home in Penetanguishene, Ont.
“I didn’t want my dad to have to experience losing his wife to breast cancer and then having to watch his daughter navigate that. And so to me, it was one of the acts that I could do for myself, but also for the team around me that so tirelessly supported me in that journey.”
For many previvors, once they received that call from a genetic counsellor confirming their inherited cancer risk, there was no going back.
Deborah Thaw, 52, found out she was a carrier of the BRCA2 mutation.
A few months later, during imaging before her surgery to remove her ovaries and fallopian tubes, they found kidney cancer.
Thaw, who lives in Oakville, Ont., had another surgery to remove half of her kidney. A few months after that, while having an MRI scan done before her double mastectomy, they found breast cancer.
“They described it to me as the cancer was so early that it was only found through an MRI,” she said.
Now cancer-free, Thaw is thankful the cancers were found early.
“People hear my story and they go, ‘Oh my God, that’s terrible,'” she said.
“I feel blessed because I wouldn’t have known any of this and in all likelihood, my kidney cancer probably would have progressed for years. They only found it through pre-op imaging because of BRCA.”
The ‘snowball effect’
Palma and other genetic counsellors say there was a spike in demand for genetic testing after celebrity Angelina Jolie wrote an opinion piece in the New York Times in 2013 detailing her previvor journey. The actress chose to have a preventive double mastectomy after her mother died of cancer at age 56 she tested positive for the BRCA1 mutation.
As seen in this 2018 photo, Angelina Jolie wrote about having a double mastectomy in 2013. (Richard Shotwell/Invision/The Associated Press)
Ten years later and the demand for testing is still high, with wait lists in many provinces.
“In a perfect world, we would see everybody within three to six months,” said Palma.
“But there’s not a centre in Canada where I think that is the case.”
At Montreal’s MUHC, Palma said the wait times for genetic tests can be anywhere from a few weeks to up to three years.
From the time of the referral to the disclosure of the genetic test results, “it can take anywhere from six to 12 months” for some patients at Hamilton Health Sciences, said laboratory genetic counsellor Laura Redondo.
At Nova Scotia’s IWK Health Centre, which serves the Maritime provinces, those with the lowest likelihood of a mutation can wait up to three to four years for test results, said genetic counsellor Erin Chamberlain.
“It can vary quite a bit for the different reasons for people coming through the service,” she added.
LISTEN | The demand for genetic testing:
White Coat Black Art26:30Previvors part 2
Part two of our series on cancer previvors – the growing number of people who through genetic testing live knowing it’s highly probable that one day they’ll get cancer.
On top of patient demand, there are also not enough genetic counsellors, Chamberlain said. There are five genetic counselling training programs in Canada, Palma said, with less than 40 genetic counsellors graduating each year.
There is also huge demand for genetic testing for the treatment of cancers.
“I could name a myriad of common cancers for which testing either of a tumour or testing the germline — so the DNA in all the cells of the body — is needed to guide medical management, whether that be for treatment purposes or surgical decision-making,” Palma said.
With every new gene carrier identified, she says it creates a “snowball effect” as all of those previvors in that family could be interested in genetic testing.
“So we’ve sort of become the victims of our own success if you like,” Palma said.
Wait varies from months to years
How long you wait for genetic testing in the public system depends on several factors.
Genetic counsellors in several provinces told CBC News that their clinic triages patients, ensuring those with the highest need for genetic testing get their results sooner.
The triaging protocol can vary from province-to-province and can vary from facility to facility even in the same province.
So that can mean people with less of an urgent need could wait months — in some cases, years — to get a genetic test done.
Lisa Barbosa, 43, was one of those people who waited years for genetic testing.
Lisa Barbosa underwent chemotherapy and radiation treatment for her breast cancer. She is seen here with her two sons. (Submitted by Lisa Barbosa)
She waited seven years to get a genetic test done in Montreal, despite being concerned about her mother and grandmother’s early diagnosis of breast cancer and breast and prostate cancer on her father’s side.
She didn’t get a genetic test through the public system until 2022 — after she was diagnosed with breast cancer. That test showed she is a BRCA1 carrier.
Within six days of her diagnosis, she had a partial mastectomy and underwent chemotherapy treatment and radiation.
She would later have a prophylactic mastectomy and had her uterus and ovaries removed.
“[I’m] still angry that I couldn’t do the genetic test earlier, even with the request from the doctor and all my history. That would [have] saved me so much,” she said.
Previvors like Jisca Meyer and Playne encourage people to discuss genetic testing and to not be afraid.
Although she could have done yearly screenings after finding out about her genetic mutation, Jisca Meyer says she has zero regrets about her double mastectomy.
“I did not choose to have the genetic mutation and I freaking hate it, but I decided the outcome.”
Patients who are older, don’t speak English, and don’t have a high school education are more likely to experience harm during a hospital stay in Canada, according to new research.
The Canadian Institute for Health Information measured preventableharmful events from 2023 to 2024, such as bed sores and medication errors,experienced by patients who received acute care in hospital.
The research published Thursday shows patients who don’t speak English or French are 30 per cent more likely to experience harm. Patients without a high school education are 20 per cent more likely to endure harm compared to those with higher education levels.
The report also found that patients 85 and older are five times more likely to experience harm during a hospital stay compared to those under 20.
“The goal of this report is to get folks thinking about equity as being a key dimension of the patient safety effort within a hospital,” says Dana Riley, an author of the report and a program lead on CIHI’s population health team.
When a health-care provider and a patient don’t speak the same language, that can result in the administration of a wrong test or procedure, research shows. Similarly, Riley says a lower level of education is associated with a lower level of health literacy, which can result in increased vulnerability to communication errors.
“It’s fairly costly to the patient and it’s costly to the system,” says Riley, noting the average hospital stay for a patient who experiences harm is four times more expensive than the cost of a hospital stay without a harmful event – $42,558 compared to $9,072.
“I think there are a variety of different reasons why we might start to think about patient safety, think about equity, as key interconnected dimensions of health-care quality,” says Riley.
The analysis doesn’t include data on racialized patients because Riley says pan-Canadian data was not available for their research. Data from Quebec and some mental health patients was also excluded due to differences in data collection.
Efforts to reduce patient injuries at one Ontario hospital network appears to have resulted in less harm. Patient falls at Mackenzie Health causing injury are down 40 per cent, pressure injuries have decreased 51 per cent, and central line-associated bloodstream infections, such as IV therapy, have been reduced 34 per cent.
The hospital created a “zero harm” plan in 2019 to reduce errors after a hospital survey revealed low safety scores. They integrated principles used in aviation and nuclear industries, which prioritize safety in complex high-risk environments.
“The premise is first driven by a cultural shift where people feel comfortable actually calling out these events,” says Mackenzie Health President and Chief Executive Officer Altaf Stationwala.
They introduced harm reduction training and daily meetings to discuss risks in the hospital. Mackenzie partnered with virtual interpreters that speak 240 languages and understand medical jargon. Geriatric care nurses serve the nearly 70 per cent of patients over the age of 75, and staff are encouraged to communicate as frequently as possible, and in plain language, says Stationwala.
“What we do in health care is we take control away from patients and families, and what we know is we need to empower patients and families and that ultimately results in better health care.”
This report by The Canadian Press was first published Oct. 17, 2024.
Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.
CALGARY – Alberta’s health minister says a new agency responsible for primary health care should be up and running by next month.
Adriana LaGrange says Primary Care Alberta will work to improve Albertans’ access to primary care providers like family doctors or nurse practitioners, create new models of primary care and increase access to after-hours care through virtual means.
Her announcement comes as the provincial government continues to divide Alberta Health Services into four new agencies.
LaGrange says Alberta Health Services hasn’t been able to focus on primary health care, and has been missing system oversight.
The Alberta government’s dismantling of the health agency is expected to include two more organizations responsible for hospital care and continuing care.
Another new agency, Recovery Alberta, recently took over the mental health and addictions portfolio of Alberta Health Services.
This report by The Canadian Press was first published Oct. 15, 2024.
Rana Van Tuyl was about 12 weeks pregnant when she got devastating news at her ultrasound appointment in December 2020.
Her fetus’s heartbeat had stopped.
“We were both shattered,” says Van Tuyl, who lives in Nanaimo, B.C., with her partner. Her doctor said she could surgically or medically pass the pregnancy and she chose the medical option, a combination of two drugs taken at home.
“That was the last I heard from our maternity physician, with no further followup,” she says.
But complications followed. She bled for a month and required a surgical procedure to remove pregnancy tissue her body had retained.
Looking back, Van Tuyl says she wishes she had followup care and mental health support as the couple grieved.
Her story is not an anomaly. Miscarriages affect one in five pregnancies in Canada, yet there is often a disconnect between the medical view of early pregnancy loss as something that is easily managed and the reality of the patients’ own traumatizing experiences, according to a paper published Tuesday in the Canadian Medical Association Journal.
An accompanying editorial says it’s time to invest in early pregnancy assessment clinics that can provide proper care during and after a miscarriage, which can have devastating effects.
The editorial and a review of medical literature on early pregnancy loss say patients seeking help in emergency departments often receive “suboptimal” care. Non-critical miscarriage cases drop to the bottom of the triage list, resulting in longer wait times that make patients feel like they are “wasting” health-care providers’ time. Many of those patients are discharged without a followup plan, the editorial says.
But not all miscarriages need to be treated in the emergency room, says Dr. Modupe Tunde-Byass, one of the authors of the literature review and an obstetrician/gynecologist at Toronto’s North York General Hospital.
She says patients should be referred to early pregnancy assessment clinics, which provide compassionate care that accounts for the psychological impact of pregnancy loss – including grief, guilt, anxiety and post-traumatic stress.
But while North York General Hospital and a patchwork of other health-care providers in the country have clinics dedicated to miscarriage care, Tunde-Byass says that’s not widely adopted – and it should be.
She’s been thinking about this gap in the Canadian health-care system for a long time, ever since her medical training almost four decades ago in the United Kingdom, where she says early pregnancy assessment centres are common.
“One of the things that we did at North York was to have a clinic to provide care for our patients, and also to try to bridge that gap,” says Tunde-Byass.
Provincial agency Health Quality Ontario acknowledged in 2019 the need for these services in a list of ways to better manage early pregnancy complications and loss.
“Five years on, little if any progress has been made toward achieving this goal,” Dr. Catherine Varner, an emergency physician, wrote in the CMAJ editorial. “Early pregnancy assessment services remain a pipe dream for many, especially in rural Canada.”
The quality standard released in Ontario did, however, prompt a registered nurse to apply for funding to open an early pregnancy assessment clinic at St. Joseph’s Healthcare Hamilton in 2021.
Jessica Desjardins says that after taking patient referrals from the hospital’s emergency room, the team quickly realized that they would need a bigger space and more people to provide care. The clinic now operates five days a week.
“We’ve been often hearing from our patients that early pregnancy loss and experiencing early pregnancy complications is a really confusing, overwhelming, isolating time for them, and (it) often felt really difficult to know where to go for care and where to get comprehensive, well-rounded care,” she says.
At the Hamilton clinic, Desjardins says patients are brought into a quiet area to talk and make decisions with providers – “not only (from) a physical perspective, but also keeping in mind the psychosocial piece that comes along with loss and the grief that’s a piece of that.”
Ashley Hilliard says attending an early pregnancy assessment clinic at The Ottawa Hospital was the “best case scenario” after the worst case scenario.
In 2020, she was about eight weeks pregnant when her fetus died and she hemorrhaged after taking medication to pass the pregnancy at home.
Shortly after Hilliard was rushed to the emergency room, she was assigned an OB-GYN at an early pregnancy assessment clinic who directed and monitored her care, calling her with blood test results and sending her for ultrasounds when bleeding and cramping persisted.
“That was super helpful to have somebody to go through just that, somebody who does this all the time,” says Hilliard.
“It was really validating.”
This report by The Canadian Press was first published Oct. 15, 2024.
Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.
