Category: #nkwadcancerkick

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Not all research is equal

As I sat at home this weekend, knowing the hearing at the House of Commons starting today, regarding the newly proposed Breast Cancer Screening Guidelines. Since I can’t testify, I felt the need to tangibly highlight to others why I feel these guidelines fail Canadian women.

So, I did what any other bored de novo stage 4 breast cancer patient would do. I decided to read through and compare the Canadian Task Force on Preventative Health Care’s 2024 Proposed Breast Cancer Screening Guidelines references to the US Task Force on Preventative Services’ 2024 Breast Cancer Screening Guidelines bibliography.

Why? Because the US felt there was enough new evidence to change their breast cancer screening guidelines to start at 40 instead of 50. And ten of the thirteen Canadian jurisdictions also changed their guidelines to start screening at 40, with the exception of Alberta, which dropped it to 45.

What did the US and the of our thirteen Canadian jurisdictions know that the Canadian Task Force didn’t?

Natalie Kwadrans – June 8, 2024

I figured the answers would lie in the research they used to inform their recommendations. I was right. It was disheartening and downright maddening.

I created a spreadsheet to compare the sources each Task Force used and did a high-level analysis of the research simply by reviewing the titles. Therefore, it’s not a perfect analysis. I was trying to see what new research was being used by the Canadian Task Force. I was extremely disappointed and let down by the content, as what the Canadian Task Force used wasn’t reflective what is available. And that lack of research comes at the expense of Canadian women’s lives.

Canadian Task Force on Preventative Health’s Twitter post asking followers to send in new research to update the Canadian Breast Cancer Screening Guidelines – July 31, 2023

Based on this Twitter post from July 31, 2023, The Canadian Task Force preferred to ask “the masses” do the legwork for them. I’m not sure why the Federal Government paid to expedite the guidelines. 41% of their sources included data from before the year 2000!

Here is a quick side-by-side comparison between the two Task Forces’ bibliography. It is clear that not all research is equal.

After doing this analysis, three things stand out to me

Do you want to see the two bibliographies for yourself? Here is a link to my spreadsheet, as well as a short video that explains my document.

If you find this analysis interesting, you can always show your appreciation by buying me a coffee or contributing towards some of my cancer treatment therapies.

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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.

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The Canadian Task Force’s anti-screening bias

That’s dangerous for Canadians!

Natalie Kwadrans, X, May 8, 2024

For those of you following my blog, you know that I have been a vocal and passionate advocate for cancer screening and cancer research. So when I read a blog post on OncoDaily Medical Journal‘s website where I was labelled a “cancer activist”, I was beaming with pride!

On the theme of advocacy, I just released my second episode of my Getting it Off my Chest series. This the first of five episodes in which I explain my concerns as they relate brief they posted on the House of Commons Standing Committee on Women’s Health.

Task Force members, who volunteer their time and expertise, are vetted to ensure neutrality in assessing evidence and developing recommendations

Canadian Task Force on Preventative Health Care 1

This episode is dedicated to debunking that claim by concretely showing the Chair of the CTFPHC, Dr. GuylÚne Thériault, has a clear and known anti-screening bias. This means she is not a neutral party; her mind is already made up. She should not be on this Task Force, let alone be chairing it.

It took me 8 weeks to cobble this video together when it would have taken anyone else only a few hours. Cancer is kicking my butt!

If you enjoy my blog or my videos, please feel free to buy me a coffee!

  1. Canadian Task Force on Preventive Health Care. (2024, February 14). House of Commons Standing Committee on Health  Study on Women’s Health . HESA – Home – House of Commons of Canada. https://www.ourcommons.ca/Content/Committee/441/HESA/Brief/BR12913982/br-external/CanadianTaskForceOnPreventiveHealthCares-e.pdf ↩
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5 years ago today

5 years ago today,

I found a lump in my right breast.

5 days after my 46th birthday.

And 5 years ago today,

lived Janice, Marloes, Libby, Yvette 

and Natalie.

Fast forward 5 years to present day.

4 of the women in peace may they rest,

and 1 “living while dying,” as they say.

5 years from then marks today the day,

when statistically only one would be left to be.

I hate knowing the last one left is me.

While I am clearly not a poet, I hope you can feel my pain and frustration. These women were my friends. All five of us were diagnosed under the age of 50. For the five of us, there are thousands of others in our situation. Our current Canadian Breast Cancer Screening guidelines are failing us, our families and our friends. I will continue to use my story to advocate for better screening guidelines in Canada. I will fight until I can no longer.
Getting It Off My Chest, episode 0001 – My Breast Cancer Screening Story

Did my story move you? If so, feel free to buy me a coffee or contribute to my medical bills.

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My immunotherapies work together like Tre’Davious White & Jordan Poyer

Today marks my 75th Herceptin and Perjeta infusions, which means I’ve been getting these for 225 weeks, or, if you prefer, 4.25 years. I thought it would be interesting to explain, in layman’s terms, how these two drugs work together to sustain my life.

These two drugs are considered targeted therapies, both of which target my HER2 protein receptors in the triple positive subtype of breast cancer I have. Think of HER2 receptors as being little antennas poking off a cell. The two immunotherapy drugs Herceptin and Perjeta bind to these antennas, interfering with their growth and reproduction signals. However, they do so by attaching to different parts of the HER2 protein “antennae”. As a result, they are more effective at doing their job because they are hitting it at different spots. 

My boyfriend is one of Buffalo Bills’ biggest fans, so I’m going to use a football analogy. It’s as if Tre’Davious White and Jordan Poyer simultaneously their opponents’ receiver, with Tre tackling the upper body and Jordan tackling his legs. While either one of these two defensive players would possibly stop the opposing offensive player from getting a touchdown, the two of them tacking together would significantly reduce how many yards the opposing team advanced much more effectively. 

NB: While my boyfriend is a HUGE Buffalo Bills fan, the first game I watched with him was in the 2020 season. I didn’t know a thing about football, although I remember seeing players dancing after a touchdown when I saw the occasional game playing on TV in a sports bar back in the late 1990 and early 2000s. I was disappointed to learn about the  “excessive celebration” rule because I thought it made the game more interesting as a spectator. It was only a few minutes later that Stefon Diggs caught the ball, ran like crazy and managed to zig zag perfectly to avoid getting tackled. He scored a touchdown and did a small victory dance. I loved it and since then, Stefon Diggs has become “my” player. It’s also fitting that he wears #14, which is the day I was born. 

This was a long ‘nota bene” to say that I couldn’t find a way to fit Stefon into my football analogy, so I decided to diverge and write the second part of my post about how he has become “my” NFL player. I’m sad their season is over, but hope to be well enough to go to Seattle next season to see the Bills play there! 

Did you like this post? If so, feel free to buy me a coffee or contribute towards some of my uninsured medical expenses.

Photo credit

Photo 43766579 Â© Michal Bednarek | Dreamstime.com

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The moving goalposts

As I reflect on my year the term “moving goalposts” came up regularly in my life. However, the best time it was used, and which makes me smile every time I think of this DM exchange with a friend, was below. My friend noticed that I had changed my kids’ Terry Fox School Run target because they had hit their target so early, we didn’t want donations to stop coming in. He noticed because he gave a significant donation that brought them over their BHAG (Big Hairy Audacious Goal). 

What I realized in this reflection is that we are generally taught to move our goalposts to achieve a better result. You often hear people say “raising the bar”, which is a similar concept. However, nobody ever talks about moving in “the other direction.” Yet, as I continue my palliative treatments, I’ve had to do that regularly and I have beaten myself up over it every single time. There are times I didn’t move my goalposts and I failed to achieve what I had set out to do, not for lack of trying; I am no longer able to perform at the same level I used to. Let me tell you – it’s hugely demoralising, and I’ve cried over it so many times this year. When I say I’m not able to perform at a level, I’m not talking about racing on my snowboard, beating a hiking time on a certain trail, or anything of the sort. I’m referring to the day-to-day things, like cleaning my house, doing my laundry, making meals, etc. I hit my wall sooner than I did in the early years of my cancer treatments. I still think I can be SuperMom who is able to shop, make dinner and clean my house before taking my kids to their extracurricular activities. 

2023 was the year I finally figured it out. It’s OK to move your personal goalposts whenever and wherever you want to move them, work being the exception as it would likely be seen as sandbagging. The reality is that you know what you are physically, mentally and/ or emotionally capable of. If it means that you move the goalposts and things you planned to do don’t get done, that’s OK. The world won’t end, I promise!

The goalposts

There are obviously times when the goalposts can’t move. You can’t leave a 4-year-old waiting at a bus stop alone or have them cook their own dinner, for example. Child Services would be visiting very quickly. While I have often asked others to help, I have always felt guilty that I was a burden to them. Thankfully, I have an incredibly wise boyfriend and a persistent therapist who continually remind me that those around me wouldn’t help if didn’t didn’t want to do so. It’s taken me a few years, but as I was driving through the mountains a few days ago, it all started to make sense.

The field full of teammates

For the times when the goalposts truly can’t move, not because of a self-imposed constraint, but because there are real consequences to moving them, I have teammates! I needed to reframe how I saw those who have been cheering me on and helping me along the way. They don’t see me ad their “pitiful” [insert appropriate noun: sister, daughter, girlfriend, mom, friend, acquaintance, patient, customer
]. These individuals choose to help because I contribute to their lives in some fashion, even if it isn’t often obvious to me.

Going into 2024, I will remember I have every right to move goalposts where I need to and when it’s permissible. For the times it isn’t possible, I have the most compassionate and amazing teammates along side me and waiting for me to simply pass the ball to them.

To A.A.B, I am dedicating the title of this blog to you. To all those my team, please accept my heartfelt thank you. I’m ready to head into 2024 with a different outlook on adjusting my goalposts.

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