Thank you.

My name is Shira Farber. I'm here today to share my own story, but I represent a sisterhood of breast cancer patients across Canada who give of their own limited time and energy to improve breast screening guidelines for all Canadians.

Today is an important anniversary for me. Three years ago to this exact date, I was at Princess Margaret Cancer Centre in Toronto, undergoing a biopsy confirming my cancer diagnosis. I can recall the visceral sensation of hearing the words “breast cancer” and believing in my heart of hearts that everything would be okay, because I thought I had caught it early. However, diagnostic testing revealed three large tumours in my right breast and stage 3 breast cancer—what my surgical oncologist described as a cancer found not too late, but one she wished she had found earlier.

What I have learned and what the task force has not paid enough attention to in these guidelines is that stage does matter when it comes to quality of life and reducing some of the side effects associated with more aggressive treatments.

The chemotherapy I received was a dose-dense treatment, which made me so ill I could not work, and I spent most of my days in bed. I could not care for myself, let alone my children or mother. My mouth was full of sores. I lost all of my hair, and my joints were severely impacted. I developed iron-deficiency anemia and tachycardia, and I became extremely ill and was hospitalized with acute constrictive pericarditis. I almost required emergency open-heart surgery.

I couldn't walk short distances without being winded, and I was forced to use a wheelchair. Forty of my lymph nodes were removed, resulting in permanent lymphedema. The mobility in my arm is severely restricted. I get run down and tired easily. I do what I can with physiotherapy, but I'm living with chronic pain. The treatment protocol for a more advanced stage of cancer also limited my options for reconstruction and required multiple surgeries. My body image was shattered, and my mental health was severely impacted. I live with PTSD and fear of recurrence.

The task force guidelines refer frequently to shared decision-making between patients and doctors. When I turned 40, I recall asking my former family doctor, who was a wonderful family doctor, if I needed to have a mammogram. I was advised that women with average risk didn't need them according to the new Canadian breast screening guidelines. I recall asking again closer to the age of 45 and receiving a similar response.

I did not understand that risk factors like breast density, which can only be discovered with your initial mammogram, placed me at higher risk. I was not aware that most women with breast cancer do not have a family history. I didn't push back or self-advocate because I trusted my doctor implicitly and was fearful of the pain I had associated with mammograms erroneously. I had faith that these guidelines, if they were Canada's recommendations and those of my medical practitioner, were the gold standard and would keep me safe.

Women's voices are simply not reflected sufficiently in the Canadian Task Force on Preventive Health Care guidelines. There is a major disconnect between what they are recommending and what actually occurs in family doctors' offices. They fail to take into account the power imbalance between doctors and patients. I speak to women with later-stage diagnoses all the time. Some describe having to advocate for themselves to get a screening referral and being denied because their doctors believe they know best or are not up to date on the latest research and evidence. Some are fearful of pushing back too hard and being labelled a difficult patient and potentially losing the privilege of having a family doctor.

The task force also infers one of the harms associated with screening as anxiety associated with callbacks. I would give anything in the world to experience the transient anxiety of a callback over the physical pain I have experienced and the fear I have of leaving my children without a mother or my husband without a partner.

Women are resilient. We can handle anxiety with the right tools. Over the past year, I watched as the task force, while in the process of conducting an evidence review, made numerous public statements to the press on social media and lectured about what they refer to as the “harms of screening”. I have no faith in a process where members who claim to be objective have publicly declared and maintained their bias.

When I was diagnosed with cancer, I did the same thing I did for family and friends in similar situations. I researched my doctors. I found a cancer care hospital I trusted, and I spoke to others with similar experiences. Isn't that what every Canadian woman deserves? Why are family doctors and Canadians taking directives from non-specialists in the field of detection? Why aren't we listening to the screening experts and surgical oncologists who are at the front lines of this disease? Why aren't we learning from patients' lived experiences? Where are our voices?

Canada has the ability to make this change now. We have an opportunity to give women modern, evidence-based guidelines that could protect some from later-stage cancers. We can't undo the past harms, but we can prevent future unnecessary suffering and deaths.

Thank you.