How to Save a Life

Regarding Canadian Breast Cancer Screening Guidelines

"Step one, you say we need to talk"....

In December 2018, The Canadian Task Force on Preventative Health (CTFPH) published the Breast Cancer Update to their 2011 recommendations on screening for breast cancer in average-risk women aged 40–74 years. Now, the 2018 update is not as "new" as it may seem, not a lot has actually changed since 2011. However, it was 2018 when my life changed, and when I developed a brand new perspective. Since it's the 2018 guidelines in effect now, I'll focus on those.

Do not be dumb like me. You may substitute the word "dumb" for naive, ignorant, and/or unaffected. Do not wait until affected personally to become knowledgeable. 

Let me tell you why this matters, leaving out as much medical jargon and statistics as I can, because:

     1. I'm not a doctor, clinician, or researcher (you likely aren't either).
     2. I'm not a statistician.
     3. Medical jargon and statistics are boring to a lot of people.

First, let me break down some key recommendations from the recommendation guidelines for women not at increased risk:

• Not screening with mammography for women aged 40 to 49 years.
• Screening with mammography every two to three years for women aged 50 to 69 years.
• Screening with mammography every two to three years for women aged 70 to 74 years.
• Not using magnetic resonance imaging (MRI), tomosynthesis or ultrasound to screen for breast cancer in women not at increased risk.
• Not performing clinical breast examinations to screen for breast cancer.
• Not advising women to practice breast self-examination to screen for breast cancer.
• It is recommended that care providers engage in shared decision-making with women.

Some news outlets are praising the new guidelines saying that they "give women more of a voice in their health care decisions" and are "empowering women to take charge of their health when it comes to breast cancer screening." This is really the main recommendation that changed in the 2018 guidelines so I can see why they are touting that point. But I call hogwash! Yes, this recommendation was added to the guidelines and I applaud that. However, I didn't need to see it in print to know that I have a choice in my own healthcare, or to know that I need to be and am my own best advocate. 

Again, I am not a doctor. I cannot breakdown the benefit vs. risk in regard to mammography, nor can I adequately explain all the science behind the guidelines or the criticisms of same. In this regard I will defer to experts in the field, such as Dr. Paula Gordon and the many experts who agree with her, who are adamantly opposed to these guidelines. Dr Gordon very succinctly explains her criticism in an opinion piece published in The Province. Read it.

On the Government of Canada website you will find this tidbit of information, I'm assuming compiled by actual researchers:

• Breast cancer is the second most common cancer in Canada. 
• In 2017 an estimated 26,300 Canadian women will be diagnosed with breast cancer and 5,000 will die of it.
• Breast cancer accounts for approximately 26% on new cases of cancer and 13% of all cancer deaths in Canadian women.
• 1 in 8 women are expected to develop breast cancer during her lifetime and 1 in 31 will die of it.

Rethink Breast Cancer states that in females the lifetime probability of developing cancer is 12.4%.

Breast cancer diagnosis statistics by age are as follows:

• 70+ years = 32%
• 50 to 69 years = 51%
• 40 to 49 years = 13%
• Under 40 years = 4% to 5%

It should also be noted that women diagnosed under the age of 50 have the highest incidence of death. That means that upward of 18% of young women are more likely to die.

Ok, enough with the statistics and jargon. I may have got a little carried away with them, but the big thing to know is that breast cancer is prevalent in Canada, and it does kill people.

Step two, "lay down a list of what is wrong"....

Full disclosure. I was diagnosed with triple negative breast cancer at the age of 38. I was considered to be at a higher risk because my mother was diagnosed with the same at age 41 (not high enough to be eligible for genetic testing, but that's a story for another day). You know who wasn't considered high risk though? My mom. There was no incidence of breast cancer in our family previous to her. My maternal grandmother did die from fully metastasized cancer, however the primary origin is unknown. 

So here is where I, as a layman, take particular issue with these guidelines.

1. Despite the guidelines, and even in the guidelines, it is still recommended that a woman promptly informs her physician when she becomes aware of an unusual change in the feel or appearance of her breast(s). There is no age recommendation on this, it applies to all. 

• How is a woman to recognize "unusual changes" without having a baseline to compare to, and especially to recognize these changes early? A baseline is developed by performing routine checks of ones own breasts, i.e: performing self-exams, which is not recommended. 
• If self-exams are not recommended, how much research and promotional material will be available to advise women on self-exams and make them more knowledgeable as to which changes to look for, and how to look for them?

2. The guidelines recommend that physicians and women engage in shared dialogue and decision-making in regard to screening.

• When the guidelines recommend against screening, clinical exams and self-exams, guidelines that physicians follow, how many doctors recommend otherwise? How many patients are knowledgeable in their own health and guidelines to request otherwise? How thorough can this conversation really be in a 10 minute allocated appointment?  
• How many people can refute the doctor and can adamantly and succinctly argue against the doctor and the guidelines and really, with gusto, advocate for their own health care? Answer: not many. 

3. By not recommending clinical exams, the guidelines are recommending that there is no physician record for future comparison. There will be no baseline.

4. The CTFPH makes the recommendations that they do based largely on the harm that screening causes. What are these harms you ask?

• False positives - This doesn't mean that everyone who receives a false positive is told they have cancer and receive treatment. It does mean that the person is recalled for further testing, such as repeat mammograms, MRI, or ultrasound etc., to determine if there is a malignancy. This can cause stress and anxiety on a person,
• Unnecessary biopsy - If a mass is found that appears as though it may be malignant, the woman may receive a biopsy. The woman's breast is numbed, and a thin hollow needle is used to remove a tissue sample from the mass. This takes about 10 minutes all in. The sample is then sent to pathology. They say this can be traumatic to a person. 
• Receiving treatment unnecessarily - The term used is "overdiagnosis" meaning that it is more likely that the person will die of something else before the cancer proves fatal. There is no tool to measure this. There is no way to know if I will be hit by a bus before the cancer gets me, or if I may have a heart attack before dying of cancer. So treat the cancer!! 

I had a biopsy, it sucked. Not the actual procedure, that was relatively painless because the area was numbed. But it hurt after the freezing wore off. Not a "holy crap I feel like I'm dying" kind of hurt, not even a "hey, can I get a prescription for painkillers" kind of hurt. It was just uncomfortable for quite a while. The waiting however..... the waiting was the worst! I will admit to being anxious during this time period. But you know what would have sucked worse than that? Dying from fully metastasized cancer, primary unknown, like my grandma.  

Women are not delicate little flowers who cannot handle the anxiety of further tests. "Instead of protecting women from screening, it’s time to start saving women’s lives." (Dr. Paula Gordon)

5. What are the benefits of screening for breast cancer according to the CTFPH?

• The benefits of breast cancer screening according to the same people who wrote these guidelines are, in two words, not dying. Verbatim: "There is evidence that shows that screening lowers a woman’s risk of dying from breast cancer." One would think that that is important....

6. According to the statistics above, 4% to 5% of those diagnosed with breast cancer are under the age of 40 and 13% are between the ages of 40 and 49. 

• How is it proposed that these woman are diagnosed without performing self-exams, clinical exams, mammograms, or using other screening tools?
• Throughout the course of my treatment I met many women under the age of 50 who were diagnosed without having any of the qualifications that would have defined them as high risk (my mother would also fall into this category). If they did not find a lump themselves, or notice a dimpling or nipple change, they may not have been diagnosed when they were (and often this was beyond Stage 1. It doesn't take a doctor to know that a higher stage equals a worse prognosis).
• According to some critics of these guidelines, approximately 400 Canadian women per year will die because of these guidelines. How many of these people will be wives, or mothers? How many will not have lived long enough to have the opportunity to be a wife or mother? They are all somebodies daughter. If 400 people died in an accident or a disaster, that would be called a tragedy. 
• Who is the CTFPH to say that these lives don't matter? 

7. With things being as they are, even today, there is a prevalence of women who are misdiagnosed, especially if they are younger. I have no statistics on this, all I have are the stories of the women who I met during the course of my treatment. In the grand scheme of things, based on the length of my treatment and the number of people I met, the number of those willing to talk, and because I can't be in all places at all times, the number of people I met was fairly limited.... Statistically, all I can say is that a lot of the survivors I met were under the age of 50 and misdiagnosed, not listened to, or told they were too young, before actually being correctly diagnosed. Way too many. 

These guidelines do not help to correct this situation. In fact, I can only assume that they will make the situation worse because they reinforce that breast cancer is an older persons disease. It is not; Cancer does not discriminate!

Step three, "try to slip past his defense"....

The only way to cause change in this regard is to make noise. Side note: The CTFPH is funded by tax dollars.

Write to your Member of Parliament (MP). Write to your provincial MLA. Write to the Minister of Health. Make. Some. Noise. These people are elected to represent the issues of their constituents so don't be afraid to utilize them.

When writing to an elected official, keep your letter short and to the point, focusing on one issue and include a clear action plan. Try to include a personal story; let them know why you are passionate about this issue. Let them know you expect a reply and give them means to contact you. Finally, be sure to be polite.

*January 29 edit* There is now a petition that may be signed online to demand that the Minister of Health rejects the guidelines. 
https://www.change.org/p/demand-that-the-health-minister-reject-dangerous-breast-cancer-screening-guidelines-that-will-cost-lives

On January 28, Global News published the article regarding the guidelines titled: "New breast cancer screening guidelines are outdated and dangerous, experts say." The cause against the CTFPH is gaining momentum!

Step four, "and pray to God he hears you"....

Amen.

Taking responsibility for your own health, speaking out, and fighting for what you believe to be right -----

That is how you can save a life.

This may not be an issue that you are passionate about, and that's ok. Perhaps it has never affected you, or hit close to home. That's a great thing! But for the 1 in 8 women that it will affect, and for the spouses, parents, children, and friends of those 1 in 8 women, I beseech you to speak out. 

Which one of us would the CTFPH sacrifice?

**Early detection saves lives. 

Let's give women and doctors the tools to detect early.**