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.”
HALIFAX – The Nova Scotia government says it could be months before it reveals how many people are on the wait-list for a family doctor.
The head of the province’s health authority told reporters Wednesday that the government won’t release updated data until the 160,000 people who were on the wait-list in June are contacted to verify whether they still need primary care.
Karen Oldfield said Nova Scotia Health is working on validating the primary care wait-list data before posting new numbers, and that work may take a matter of months. The most recent public wait-list figures are from June 1, when 160,234 people, or about 16 per cent of the population, were on it.
“It’s going to take time to make 160,000 calls,” Oldfield said. “We are not talking weeks, we are talking months.”
The interim CEO and president of Nova Scotia Health said people on the list are being asked where they live, whether they still need a family doctor, and to give an update on their health.
A spokesperson with the province’s Health Department says the government and its health authority are “working hard” to turn the wait-list registry into a useful tool, adding that the data will be shared once it is validated.
Nova Scotia’s NDP are calling on Premier Tim Houston to immediately release statistics on how many people are looking for a family doctor. On Tuesday, the NDP introduced a bill that would require the health minister to make the number public every month.
“It is unacceptable for the list to be more than three months out of date,” NDP Leader Claudia Chender said Tuesday.
Chender said releasing this data regularly is vital so Nova Scotians can track the government’s progress on its main 2021 campaign promise: fixing health care.
The number of people in need of a family doctor has more than doubled between the 2021 summer election campaign and June 2024. Since September 2021 about 300 doctors have been added to the provincial health system, the Health Department said.
“We’ll know if Tim Houston is keeping his 2021 election promise to fix health care when Nova Scotians are attached to primary care,” Chender said.
This report by The Canadian Press was first published Sept. 11, 2024.
ST. JOHN’S, N.L. – Newfoundland and Labrador‘s chief medical officer is monitoring the rise of whooping cough infections across the province as cases of the highly contagious disease continue to grow across Canada.
Dr. Janice Fitzgerald says that so far this year, the province has recorded 230 confirmed cases of the vaccine-preventable respiratory tract infection, also known as pertussis.
Late last month, Quebec reported more than 11,000 cases during the same time period, while Ontario counted 470 cases, well above the five-year average of 98. In Quebec, the majority of patients are between the ages of 10 and 14.
Meanwhile, New Brunswick has declared a whooping cough outbreak across the province. A total of 141 cases were reported by last month, exceeding the five-year average of 34.
The disease can lead to severe complications among vulnerable populations including infants, who are at the highest risk of suffering from complications like pneumonia and seizures. Symptoms may start with a runny nose, mild fever and cough, then progress to severe coughing accompanied by a distinctive “whooping” sound during inhalation.
“The public, especially pregnant people and those in close contact with infants, are encouraged to be aware of symptoms related to pertussis and to ensure vaccinations are up to date,” Newfoundland and Labrador’s Health Department said in a statement.
Whooping cough can be treated with antibiotics, but vaccination is the most effective way to control the spread of the disease. As a result, the province has expanded immunization efforts this school year. While booster doses are already offered in Grade 9, the vaccine is now being offered to Grade 8 students as well.
Public health officials say whooping cough is a cyclical disease that increases every two to five or six years.
Meanwhile, New Brunswick’s acting chief medical officer of health expects the current case count to get worse before tapering off.
A rise in whooping cough cases has also been reported in the United States and elsewhere. The Pan American Health Organization issued an alert in July encouraging countries to ramp up their surveillance and vaccination coverage.
This report by The Canadian Press was first published Sept. 10, 2024.
All orders are protected by SSL encryption – the highest industry standard for online security from trusted vendors.
Bizarre Sunlight Loophole Melts Belly Fat Fast! is backed with a 60 Day No Questions Asked Money Back Guarantee. If within the first 60 days of receipt you are not satisfied with Wake Up Lean™, you can request a refund by sending an email to the address given inside the product and we will immediately refund your entire purchase price, with no questions asked.
