My name is Shira Farber, and I am a resident of Ontario. I am the mother of three, a business owner, a community volunteer, and a proud Canadian citizen. I have spoken on the issue of the need for better national screening guidelines publicly and in the media, advocating both provincially and federally. I was invited to Canadian Parliament to meet with former Health Minister Jean-Yves Duclos and the Women’s Caucus with the support of my MP, the Honorable Ya’ara Saks and have continued to actively engage with
members of Parliament and Public Health about this important issue.

When I found an abnormality in my breast, almost two years ago, just before my 48th birthday, it was already considered an advanced stage cancer in the form of three solid large tumours and was suspected to have been growing for some time.
When I had asked my family doctor on two separate occasions about screening after I turned 40, I was advised that Canadian guidelines recommended against mammograms before the age of 50, due to too many “false positives.” I had great respect for my family doctor and always had faith that her guidance was based on current evidence.

I was never encouraged to do self- breast exams or concern myself with breast health. It didn’t dawn on me that I would need to do any further research into the subject. I had always trusted my doctor on every issue and it seemed from casual discussions with most of my friends, that we had all been given similar responses.

I did not have a family history of breast cancer and was reassured I had nothing to worry about. I was not aware that 80-85% of women with breast cancer do not have a family history. I was also not aware that Canadian breast screening guidelines state that the decision to have a mammogram is based on a woman’s values and preferences. Now, I know that there is a significant education gap because many doctors and women do not know this either; like me, some women are still being denied a mammogram requisition in their 40s.

Throughout my advocacy work and living with breast cancer, I hear from women across Canada who have either been discouraged from having a mammogram before the age of 50 or in some cases have been outright denied when they request a referral. The Canadian Task Force on Preventive Health Care recommendations are typically cited as the rationale, as they are thought to be, “best practice”.
My treatment consisted of aggressive chemotherapy, a mastectomy with no option of immediate reconstruction, a complete sentinel node dissection of almost 40 nodes that resulted in permanent lymphedema of the arm, followed by radiation. I later underwent a mastectomy on the contralateral side and a complex reconstruction using my abdominal tissue. I have required one revision surgery and will likely need another. I suffered serious cardiac related issues from radiation and chemotherapy treatment and required weeks of hospitalization. My joints have been severely impacted by chemotherapy and hormone therapy drugs. Stairs are a challenge for me, as are long distances. To prevent the risk of recurrence, I continue to have treatments that can result in serious side effects, including jaw necrosis. I also suffered from iron deficiency anemia for which I have required multiple transfusions, regular physical therapy for joint pain, a range of motion challenges, and occupational therapy to cope with brain fog and fatigue.

The physical and emotional side effects of treatment have been debilitating. The impact on my family is secondary cancer. I wasn’t able to work for over a year, almost lost my business, and incurred tremendous debt and legal fees to get back on my feet. I can really only work a limited amount of time a week now and have had to hire more staff to keep my business afloat. I am fortunate to be able to work from home and have flexible hours because I would likely have to collect EI, if I had to work outside of the home. My calendar is full of medical appointments and hospital visits. My husband had to reduce his workload to care for me and our children. Two of my children required therapy to cope with the situational anxiety and stress. I can no longer be a caregiver to my mother.

I have met so many incredible women, also blindsided by a similar advanced stage diagnosis. Two of them, with whom I shared a very close relationship have died within the past few years, leaving young families behind.

The Canadian breast screening guidelines ignore current evidence and recommend screening at 50, not 40. The guidelines also ignore that the peak age for breast cancer is in the 40s for Asian, Hispanic and some black women. For white women, it’s in the late 50s/ early 60s. Many provinces ignore the guidelines and begin self-referral at 40. The women of Canada, all deserve the same chance to find cancer early.
The Canadian Cancer Society (CCS) withdrew their endorsement of the breast screening guidelines. The CCS believes there is an obligation to ensure guidelines are keeping pace with newer research and the needs of our diverse population. This should include screening women at 40 because it saves lives and also gives women a better chance of living with cancer without the comorbidities associated with more aggressive treatments. It is completely unjust that a woman living in one Canadian province has a better chance of earlier detection than one living elsewhere in Canada.

I am asking you to save women from experiencing the pain and trauma I have felt since my cancer diagnosis. Women need to have the right to make their own health decisions and be able to self-refer for mammograms starting at age 40. Canada could be a leader in this area by relying on new and current evidence.
Women in their forties are often the backbone of their families, many act as caregivers for their children and parents. They contribute to their communities and are full of dreams for the future. No one should have their life interrupted in the way I have if it can be avoided with earlier detection. Women in their forties will almost always choose aggressive treatments, if it gives them just one more day to be a mother or hold their partner’s hand. If cancer is detected early, there is the possibility that they can avoid chemotherapy or mitigate some of the side effects associated with harsher treatments. Too many women are being diagnosed at younger ages with more advanced cancers, as a result of the Canadian Task Force on Preventative Health Care which seem extremely biased against the benefits of screening. We need experts in breast cancer making these recommendations. We need to be flexible and fluid with new research and data. We need to include patient voices and experiences.

Sincerely,
Shira Farber
Breast Cancer Patient/Screening Advocate
Submission to Standing Committee on Health. Women’s Health Study. January 2024