Our lemonade just got a little sweeter

What a day May 30th was for cancer care in Canada! I was energized to read the Terry Fox Foundation’s open letter calling on doctors, scientists and philanthropists to increase collaboration within the oncology community for the benefit all cancer patients. Its headline read: “This is the beginning of the end for cancer as we know it.”
It gave me goosebumps!

For context, a week ago, I was in Toronto for the Terry Fox Research Institute’s 10th Annual Scientific Meeting. Everyone I met, from researcher, clinician, board member, patient to philanthropist, felt the same: we are on the cusp of achieving Terry’s dream. I believe this letter will be one that marks an important milestone in Terry’s legacy. I signed it, as a Patient Partner, alongside the most respected oncology researchers and clinicians in North America. The digital version of the letter is available on the Terry Fox Foundations website.
Wow! What an honour!

Shifting gears away from the research and treatment sides of cancer to screening. If you follow my blog, you likely know that since my diagnosis, I have been advocating, along with so many breast cancer experts and patients, to reduce the screening age and to provide supplemental screening to women with dense breasts, such as mine. It was therefore a very emotional day when I read the draft Canadian Breast Cancer Screening Guidelines only to find out the guidelines remained mostly unchanged. Although it wasn’t unexpected – the Canadian Task Force on Preventative Health Care took out an advertorial a few weeks earlier to pre-emptively position the draft guidelines and did so under the guise of a Q&A with the Task Force’s chair. The Hill Times touts itself as having an unmatched readership of Canada’s most important public policy decion-makers in order to communicate with them before decisions are made.
This advertorial, intended to “sell” the draft guidelines prior to their release, soured my lemonade!

And while I expected exactly what was released by the Task Force on May 30, 2024, it was such a letdown. The guidelines remained virtually unchanged from the 2018 ones, which also were virtually unchanged from the 2011 ones. I shared my concerns on X as soon as I had an opportunity to read them, and later in the day, I was asked by CBC Radio in Calgary to comment on them.

CBC Radio in Calgary invited Natalie Kwadrans to comment on the draft 2024 Canadian Breast Cancer Screening Guidelines

What did not make it on air was how emotional I became when thinking about how these guidelines were going to impact the women that come behind me, the next generation such as my daughter. We all found our cancers too late. It felt like I had the wind knocked right out of me. I would die before I’d see the advocacy work myself and so many others have been doing for years, make a difference for these younger women.

These proposed guidelines mean there will be more cases like mine.

More young women will accidentally find
their cancer on their own or with incidental imaging.
More young women will hear
their breast cancer has already spread.
More young women will now be subjected to
much harsher treatments.
More young women will die needlessly early,
like five of my friends did.
Like the my friend in hospice will.
Like I will too.

Natalie Kwadrans – de novo stage 4 cancer
diagnosed in March 2019, 5 days after her 46th birthday

  • The new guidelines:
    • create even more confusion that what already exists.
      • With the Canadian guidelines having remained unchanged for so long, provinces created their own guidelines to reflect updated research.
      • Some provinces also created guidelines for women who have factors that increase their overall risk: dense breasts, ethnic or genetic predispositions, etc..
      • The Task Force’s proposed guidelines do not align with the 10 provinces that have committed to lowering their screening age.
    • create inequity for breast cancer screening across Canada;
    • grossly overestimate the “harms” of screening and underestimate the “benefits”;
    • place enormous weight on “patient’s values and preferences”, when the data was derived from retrospective analysis.
      • The analysis was done on data for which patients had been conditioned, for over a decade, to the idea that women needed to wait until 50 to begin self-examinations or screening.
      • Guidelines since 2011 have focused on communicating how the “harms” of screening significantly outweigh the benefits.  
      • Women had been repeatedly told about how much anxiety they would experience waiting for results or because they received a false-positive, which resulted in a recall.
      • Very little emphasis was placed on the reduction of required treatment associated with early detection, improved quality of life and better outcomes. As a result, patients were predisposed to “prefer” or “value” what had been indoctrinated in the over the years leading up to them requiring screening.
    • It is very difficult to accept this research at face value and research needs to be done on women’s actual preferences and values when provided with a holistic view of the pros and cons of earlier screening;
      • the Task Force’s Chair is the co-lead of family practice for Choosing Wisely Canada, whose focus is to reduce unnecessary tests and treatments in Canada, and who also is a speaker for topics such as overdiagnosis. The Task Force’s Conflict of Interest Policy is very clear as to what consists of non-financial interest (page 5, section 3.2);
      • there is no expertise on the Task Force, which results in a significant gap between what was included in the proposed guidelines, global best-practices and what is recommended by experts in their field;
      • the lack of industry and patient engagement;
    • they set a precendence as to how future guidelines are set by this Task Force . The Task for sets guidelines so for so many other illnesses, from post-partum depression screening, and hypertension, to impaired vision, diabetes and many other cancers.

The concerns identified above, if not fixed, will be perpetuated and negatively impact the health of virtually all Canadians. In fact, The Coalition for Responsible Healthcare Guidelines are very concerned with the Task Force’s “dangerous guidance” for cancer screenings.

Shortly after the Task Force released its guidelines, the Federal Minister of Health, Mark Holland, stepped in. During the press release in which he reacted to the proposed guidelines, he stated how “concerned and disappointed” with them. He did not feel the guidelines provided clear directions to health care providers, nor did they conform with what he heard from experts and patients across the country. He has now ordered full review of the process, the data and Task Force composition.  A recording of his press conference is available on the CPAC YouTube channel, and his written statement can be found on his X account. These were the changes we had been advocating for!

Minister Holland had just stirred the lemonade and added sugar to it; it tasted so much better now. Although the work is far from done, this is a big milestone for cancer screening. The heaviness that fell upon me was lifted just as quickly. We had been heard! And I cried

May 30, 2024 will forever be etched in my mind as a significant milestone for cancer care in Canada, with increased collaboration across the industry.

If you found my post interesting, feel free to buy me a coffee.

#1 Terry Fox School Run Fundraisers in 2023!

Kids running at the Terry Fox School Run in 2023

There are so many things for me to be proud of when it comes to my kids. I think I have the best kids in the world! OK, so does every other mom, so this isn’t a unique perspective. Having said that, I can unbiasedly say that my kids are the best Terry Fox fundraisers in 2023! Imagine the pride I had when I received the following email this morning.

#1 Terry Fox School Run fundraisers for 2023
#1 Terry Fox School Run fundraisers for 2023

This year marks the 5th year my kids have been running as part of their school’s Terry Fox School Run, and every year, they have grown their fundraising efforts. The don’t simply rely on “mom” to spread the word via social media; they work hard at raising funds. They ask their friends’ parents at their extracurricular activities and they knock on doors for donations. In fact, they door knocked twice this year, hitting up hundreds of homes. Their efforts were noticed in the community. They had a visit from our Ward’s City Councillor to talk about their story, which he shared on his social media. They were also interviewed by CBC’s reporter Tom Ross, and their story aired on CBC News Calgary on September 22, 2023. Click here to listen to the segment.1

It’s hard to believe that in the month after the segment aired, the kids’ donations went from $10,000 to a whopping $21,100. I’m floored at how much they have collected this year.

I’m so grateful to still be here to watch my kids grow up. In 2018, Victoria asked her grand-parents to donate. In 2019, I remember how fearful Victoria was the first time we knocked on someone’s door. But she was enthusiastic; she did the knocking and I did the talking. Things started to change in 2020. Victoria did the knocking and some of the talking, with Nicolas and I standing by her side at the door. In 2021 with Nicolas started helping his big sister. He did the knocking and she did the talking. I was told to stay on the sidewalk and only to come if someone needed a tax receipt. Last year, Nicolas did the knocking and some of the talking, while Victoria ran off to the next house to do her “spiel”. 2023 was the year the kids partially split up, increasing on the numbers of doors they knocked on. They both did the knocking, they both did the talking, but at different houses. Still a little shy, Nicolas would sometimes give his big sister the stage and act as the “QR code provider.” I stayed back and only helped with income tax receipts.

As I sit here writing this post, I find myself smiling ear-to-ear. I’m lucky to be a “stage 4 breast cancer unicorn” (meaning I have outlived my life expectancy) as I am able to witness my kids, who are only 9 and 7, raise over $35,000 for cancer research so far. The magnitude of what they have done this year is beyond incredible. As Victoria so eloquently put it, “I hope that it goes smoothly like this every year.”2

  1. Ross, T. (2023, September 22). Two Calgary kids have hit a huge milestone raising money for the Terry Fox Run this year [Radio broadcast]. CBC Calgary News ↩︎
  2. Victoria Kwadrans, age 9, interviewed by Tom Ross, in a CBC Calgary News segment on September 22, 2023 ↩︎

Are you proud of my kids and my fundraising efforts for cancer research? If so, feel free to buy me a coffee or contribute towards some of my uninsured medical expenses.

All you need is desire

At the end of October, I was contacted by the “Fédération des parents francophones de l’Alberta” (FPFA) and was pleasantly surprised to learn that I was one of the recipients of the “Manon Bouthillier Prize” for 2022. Members of the FPFA (individual schools, school boards, school councils, parent councils and parents of francophone in Alberta) nominate volunteers who are engaged, involved and passionate about francophone education in Alberta.

While flattered, I initially wasn’t sure I deserved the recognition. I didn’t understand what I had done as a school volunteer that was so impactful in furthering French education in Alberta. It was only when I learned why I was nominated that I could see how I did so.

As you likely know, I have been actively involved with Terry Fox School Runs since 2018. However, the recognition is specifically for 2019 onwards. That was the year I was diagnosed with terminal cancer and I offered to speak to the students at the school my kids attend about Terry Fox and his legacy. After all, I know a LOT about living with cancer, I speak French and my children attend the school. English schools have access to a number of cancer patient speakers. Unbeknown to me, the pool of francophone cancer patient volunteer speakers is virtually non-existent. I happened to fill that void.

Unfortunately, I was not available to receive the Award in person at the 35th FPFA symposium on November 5, 2022. It was today, just before my kids did their holiday performances, that the school principal had a chance to give me the plaque. The timing seemed so very fitting: December is the month of giving.

I have been beaming all day. It’s not the Award itself that makes me feel so proud; it’s knowing that every time my children see it displayed at home, they remember that giving can be done in many different ways. The only thing they need to have is desire.

If you also think I am deserving of this award, feel free to buy me a coffee or contribute towards some of my uninsured medical expenses.

Your mommy is bald and ugly!

These were the words my five-year-old daughter (identified as V) was subjected to on her bus ride home on the first day of school this year. The morning school bus didn’t show up, so in a mad rush, I dropped her off in the schoolyard, without a hat or makeup. Thinking back, I must have looked scary to children who had never seen anyone going through chemotherapy.

My daughter was quite upset that evening and told me she tried to defend me by explaining that I had cancer and my medications had made me lose my hair. She tried assuring her bus-mates that it was temporary, and my hair would grow back. She told they continued to make fun of me, so she simply ignored them. I told her that I was very proud of her sticking up for me, especially in front of many older students and I told her ignoring them was an appropriate response.

That night, I wondered what I could do to prevent address this. After mulling through many different scenarios, I called the school the next morning and asked if they would be hosting a Terry Fox run as they had last year. The Vice-Principal confirmed they were. I explained what had happened to my daughter on the bus and wanted to turn it into something positive. I asked the school would consider having me as a guest speaker. I was hoping to explain what it is like to go through cancer treatments and how it affects everyone around me. I ensured her it would be a positive approach to living with cancer. She liked the idea, so we sprang into action. Her Terry Fox lead coordinated time with the students and I contacted the Alberta branch of the Terry Fox Foundation to see if they had any materials, information or facts I could use. They did. We met, they provided me what I needed to be successful, and just like that, I became a Terry Fox Ambassador!

My approach for my presentation was to talk about Terry Fox and how I remembered watching him as a child. Then, I would talk about my experience with cancer. I thought I was as prepared as I ever was to do these presentations at my daughter’s school. Who better knew my story than me? I since I was a national team snowboarder who represented Canada on the World Cup Circuit for 3 years, I thought this “cool factor” would make me more interesting to the students. Armed with a visual presentation and numerous interactive props that I could use with the children (my wigs, head scarves, a split pea in a bag (to show the size of my lump when I found it), and the best part… a replica of Terry Fox’ artificial leg! I was ready!

So much for that theory. I quickly learned in my first presentation that the hook wasn’t the snowboarding career I thought they would be attracted to. It was the two pictures of my family: one with hair from December, a few short months prior to my diagnosis, and one from August, fully bald in the thick of my diagnosis. That wasn’t the case. What captured their attention was V. If they didn’t know her personally, they had seen her around, so they knew of her. What they cared about was I was the mom with cancer of a student they were going to school with. That was what made me relatable and the presentations more interesting to them. So, I adapted accordingly.

My next incorrect assumption was that the younger kids would have the easiest questions and the older ones would possibly be more challenging. I started all my presentations that I was open to all the questions they had. Let me tell you, the youngest children definitely put me to the test. I realized afterwards that the children in the lower grades tended to be the most curious. And, since they do not necessarily understand social norms, they had no filters with their questions. The oldest students were the ones that require a bit more prompting to open the door for conversation. These students took their time thinking about every word they were using. You could almost see the “hamster wheel turning” as they decided whether or not a question was appropriate and how to ask it without upsetting or offending me. As someone who does a fair amount of public speaking in my professional life, I was surprised at how unpredictable questions are in developing young minds. Some of the questions that stick out in my mind are:

  • My dog had cancer. He died. Do human cancer treatments work for dogs too? And what about cats? And horses? And…
  • Do you wear wigs because you are ugly without them?
  • How did Terry Fox attach his leg stump to the artificial leg?
  • Is cancer contagious?
  • You said you exercise, eat well and have never smoked, but you still got cancer. Does that mean that it isn’t worth doing all those things, because we are told that it will help?
  • Will you live to see V grow up?
  • How does cancer form?
  • How do you stop cancer cells from replicating?
  • Will I [the student asking the question] get cancer?
  • Is that your cancer in the plastic bag? (I had put a split pea in a plastic bag to demonstrate the size of my lump when I found it and suggested students put the bag under their t-shirt and see what it feels like since it’s so small and so they would know what a potential sign of cancer is.)
V and I running at her school’s annually Terry Fox run in 2019.

By the time I had done my presentations on the third day, some students were approaching me in the hallway to ask me questions they thought after I spoke to them. Some called out my name and waved to me as I was leaving the school and they saw me walking on the sidewalk beside their playground. V also told me that the two students who had made fun of her stopped being mean to her.

The following week, I ran the Terry Fox Run with my daughter. Every student had been given a sticker that identified who they were dedicated their run to. I noticed many students had written V’s name down. Initially, I thought it was only her classmates who had done this, but as we ran, many students who weren’t in her class stopped us to show us who they were running for. While some were for me, many were for V. That’s when I realized that the students understood that even though I am the one with cancer, the disease also impacts my family, my friends and our community. And I couldn’t have asked for a more rewarding validation of the impression left by the presentations I made.

My daughter’s Terry Fox sticker. She ran for me.

If you found this post insightful, please feel free to buy me a coffee or contribute towards some of my uninsured medical expenses.