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Meet the ‘previvors’: Women who have an increased risk for cancer

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White Coat Black Art26:30Previvors

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.

A woman stands showing off her scar from her double mastectomy.
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.

The demand for testing spiked so much genetic experts have dubbed it “the Angelina Jolie effect.”

A woman in a gold dress stands in front of a blue background.
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.

A woman poses with her two sons.
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.”

 

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What’s the greatest holiday gift: lips, hair, skin? Give the gift of great skin this holiday season

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Give the gift of great skin this holiday season

Skinstitut Holiday Gift Kits take the stress out of gifting

Toronto, October 31, 2024 – Beauty gifts are at the top of holiday wish lists this year, and Laser Clinics Canada, a leader in advanced beauty treatments and skincare, is taking the pressure out of seasonal shopping. Today, Laser Clincs Canada announces the arrival of its 2024 Holiday Gift Kits, courtesy of Skinstitut, the exclusive skincare line of Laser Clinics Group.

In time for the busy shopping season, the limited-edition Holiday Gifts Kits are available in Laser Clinics locations in the GTA and Ottawa. Clinics are conveniently located in popular shopping centers, including Hillcrest Mall, Square One, CF Sherway Gardens, Scarborough Town Centre, Rideau Centre, Union Station and CF Markville. These limited-edition Kits are available on a first come, first served basis.

“These kits combine our best-selling products, bundled to address the most relevant skin concerns we’re seeing among our clients,” says Christina Ho, Senior Brand & LAM Manager at Laser Clinics Canada. “With several price points available, the kits offer excellent value and suit a variety of gift-giving needs, from those new to cosmeceuticals to those looking to level up their skincare routine. What’s more, these kits are priced with a savings of up to 33 per cent so gift givers can save during the holiday season.

There are two kits to select from, each designed to address key skin concerns and each with a unique theme — Brightening Basics and Hydration Heroes.

Brightening Basics is a mix of everyday essentials for glowing skin for all skin types. The bundle comes in a sleek pink, reusable case and includes three full-sized products: 200ml gentle cleanser, 50ml Moisture Defence (normal skin) and 30ml1% Hyaluronic Complex Serum. The Brightening Basics kit is available at $129, a saving of 33 per cent.

Hydration Heroes is a mix of hydration essentials and active heroes that cater to a wide variety of clients. A perfect stocking stuffer, this bundle includes four deluxe products: Moisture 15 15 ml Defence for normal skin, 10 ml 1% Hyaluronic Complex Serum, 10 ml Retinol Serum and 50 ml Expert Squalane Cleansing Oil. The kit retails at $59.

In addition to the 2024 Holiday Gifts Kits, gift givers can easily add a Laser Clinic Canada gift card to the mix. Offering flexibility, recipients can choose from a wide range of treatments offered by Laser Clinics Canada, or they can expand their collection of exclusive Skinstitut products.

 

Brightening Basics 2024 Holiday Gift Kit by Skinstitut, available exclusively at Laser Clincs Canada clinics and online at skinstitut.ca.

Hydration Heroes 2024 Holiday Gift Kit by Skinstitut – available exclusively at Laser Clincs Canada clinics and online at skinstitut.ca.

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Here is how to prepare your online accounts for when you die

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LONDON (AP) — Most people have accumulated a pile of data — selfies, emails, videos and more — on their social media and digital accounts over their lifetimes. What happens to it when we die?

It’s wise to draft a will spelling out who inherits your physical assets after you’re gone, but don’t forget to take care of your digital estate too. Friends and family might treasure files and posts you’ve left behind, but they could get lost in digital purgatory after you pass away unless you take some simple steps.

Here’s how you can prepare your digital life for your survivors:

Apple

The iPhone maker lets you nominate a “ legacy contact ” who can access your Apple account’s data after you die. The company says it’s a secure way to give trusted people access to photos, files and messages. To set it up you’ll need an Apple device with a fairly recent operating system — iPhones and iPads need iOS or iPadOS 15.2 and MacBooks needs macOS Monterey 12.1.

For iPhones, go to settings, tap Sign-in & Security and then Legacy Contact. You can name one or more people, and they don’t need an Apple ID or device.

You’ll have to share an access key with your contact. It can be a digital version sent electronically, or you can print a copy or save it as a screenshot or PDF.

Take note that there are some types of files you won’t be able to pass on — including digital rights-protected music, movies and passwords stored in Apple’s password manager. Legacy contacts can only access a deceased user’s account for three years before Apple deletes the account.

Google

Google takes a different approach with its Inactive Account Manager, which allows you to share your data with someone if it notices that you’ve stopped using your account.

When setting it up, you need to decide how long Google should wait — from three to 18 months — before considering your account inactive. Once that time is up, Google can notify up to 10 people.

You can write a message informing them you’ve stopped using the account, and, optionally, include a link to download your data. You can choose what types of data they can access — including emails, photos, calendar entries and YouTube videos.

There’s also an option to automatically delete your account after three months of inactivity, so your contacts will have to download any data before that deadline.

Facebook and Instagram

Some social media platforms can preserve accounts for people who have died so that friends and family can honor their memories.

When users of Facebook or Instagram die, parent company Meta says it can memorialize the account if it gets a “valid request” from a friend or family member. Requests can be submitted through an online form.

The social media company strongly recommends Facebook users add a legacy contact to look after their memorial accounts. Legacy contacts can do things like respond to new friend requests and update pinned posts, but they can’t read private messages or remove or alter previous posts. You can only choose one person, who also has to have a Facebook account.

You can also ask Facebook or Instagram to delete a deceased user’s account if you’re a close family member or an executor. You’ll need to send in documents like a death certificate.

TikTok

The video-sharing platform says that if a user has died, people can submit a request to memorialize the account through the settings menu. Go to the Report a Problem section, then Account and profile, then Manage account, where you can report a deceased user.

Once an account has been memorialized, it will be labeled “Remembering.” No one will be able to log into the account, which prevents anyone from editing the profile or using the account to post new content or send messages.

X

It’s not possible to nominate a legacy contact on Elon Musk’s social media site. But family members or an authorized person can submit a request to deactivate a deceased user’s account.

Passwords

Besides the major online services, you’ll probably have dozens if not hundreds of other digital accounts that your survivors might need to access. You could just write all your login credentials down in a notebook and put it somewhere safe. But making a physical copy presents its own vulnerabilities. What if you lose track of it? What if someone finds it?

Instead, consider a password manager that has an emergency access feature. Password managers are digital vaults that you can use to store all your credentials. Some, like Keeper,Bitwarden and NordPass, allow users to nominate one or more trusted contacts who can access their keys in case of an emergency such as a death.

But there are a few catches: Those contacts also need to use the same password manager and you might have to pay for the service.

___

Is there a tech challenge you need help figuring out? Write to us at onetechtip@ap.org with your questions.

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Pediatric group says doctors should regularly screen kids for reading difficulties

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The Canadian Paediatric Society says doctors should regularly screen children for reading difficulties and dyslexia, calling low literacy a “serious public health concern” that can increase the risk of other problems including anxiety, low self-esteem and behavioural issues, with lifelong consequences.

New guidance issued Wednesday says family doctors, nurses, pediatricians and other medical professionals who care for school-aged kids are in a unique position to help struggling readers access educational and specialty supports, noting that identifying problems early couldhelp kids sooner — when it’s more effective — as well as reveal other possible learning or developmental issues.

The 10 recommendations include regular screening for kids aged four to seven, especially if they belong to groups at higher risk of low literacy, including newcomers to Canada, racialized Canadians and Indigenous Peoples. The society says this can be done in a two-to-three-minute office-based assessment.

Other tips encourage doctors to look for conditions often seen among poor readers such as attention-deficit hyperactivity disorder; to advocate for early literacy training for pediatric and family medicine residents; to liaise with schools on behalf of families seeking help; and to push provincial and territorial education ministries to integrate evidence-based phonics instruction into curriculums, starting in kindergarten.

Dr. Scott McLeod, one of the authors and chair of the society’s mental health and developmental disabilities committee, said a key goal is to catch kids who may be falling through the cracks and to better connect families to resources, including quicker targeted help from schools.

“Collaboration in this area is so key because we need to move away from the silos of: everything educational must exist within the educational portfolio,” McLeod said in an interview from Calgary, where he is a developmental pediatrician at Alberta Children’s Hospital.

“Reading, yes, it’s education, but it’s also health because we know that literacy impacts health. So I think that a statement like this opens the window to say: Yes, parents can come to their health-care provider to get advice, get recommendations, hopefully start a collaboration with school teachers.”

McLeod noted that pediatricians already look for signs of low literacy in young children by way of a commonly used tool known as the Rourke Baby Record, which offers a checklist of key topics, such as nutrition and developmental benchmarks, to cover in a well-child appointment.

But he said questions about reading could be “a standing item” in checkups and he hoped the society’s statement to medical professionals who care for children “enhances their confidence in being a strong advocate for the child” while spurring partnerships with others involved in a child’s life such as teachers and psychologists.

The guidance said pediatricians also play a key role in detecting and monitoring conditions that often coexist with difficulty reading such as attention-deficit hyperactivity disorder, but McLeod noted that getting such specific diagnoses typically involves a referral to a specialist, during which time a child continues to struggle.

He also acknowledged that some schools can be slow to act without a specific diagnosis from a specialist, and even then a child may end up on a wait list for school interventions.

“Evidence-based reading instruction shouldn’t have to wait for some of that access to specialized assessments to occur,” he said.

“My hope is that (by) having an existing statement or document written by the Canadian Paediatric Society … we’re able to skip a few steps or have some of the early interventions present,” he said.

McLeod added that obtaining specific assessments from medical specialists is “definitely beneficial and advantageous” to know where a child is at, “but having that sort of clear, thorough assessment shouldn’t be a barrier to intervention starting.”

McLeod said the society was partly spurred to act by 2022’s “Right to Read Inquiry Report” from the Ontario Human Rights Commission, which made 157 recommendations to address inequities related to reading instruction in that province.

He called the new guidelines “a big reminder” to pediatric providers, family doctors, school teachers and psychologists of the importance of literacy.

“Early identification of reading difficulty can truly change the trajectory of a child’s life.”

This report by The Canadian Press was first published Oct. 23, 2024.

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