As a patient who has been negatively impacted by difficulty accessing mammograms in Canada due to task force guidelines, I would like to thank this committee for inviting me to speak today. Many women have found themselves in similar circumstances who will feel seen and heard. Through treatment, I heard many stories of fellow patients, friends and families with the experience of delayed diagnosis. Many Canadians have lost a young woman in their life.
When I was 39, my doctor told me that she had been reading, and that since screening at 40 was a shared decision, she wanted me to start thinking about it. She suggested that a benchmark at 40 would help us watch for changes and be proactive. I agreed—that sounded very wise. Unfortunately, within the year she suddenly retired and closed her practice. It took me some time, but eventually I found a young doctor accepting new patients.
One of my first requests was for a screening mammogram. She refused, explaining that it was not recommended. I insisted, but again she refused. I would ask again the following year—but again no. I knew I couldn't get a second opinion, as I was asked to sign a contract that I would not use walk-in clinics. I knew if my doctor removed me from her roster, I would be unable to find another due to the doctor shortage.
Then I found a lump. At first I dismissed it. I felt that since she had been so firm on not authorizing a mammogram, the appointment would be challenging. Eventually I did go, and two weeks after my 43rd birthday I was diagnosed with a locally advanced cancer with lymph node involvement. My family doctor called me between appointments. She was crying on the phone, but I didn't have the time or energy to comfort her. I think the guidelines cause harm to the doctors who follow them too.
Sure, the biopsy scans and all of the processes of diagnosis were stressful, but so was trying to advocate for my care to my doctor in the first place. I wonder about what if my first doctor hadn't retired or if I'd taken the chance and gone to a walk-in clinic to ask for a requisition. There is a power imbalance between doctors and patients, which makes shared decision-making impractical. Unless patients can access screening without their doctor's permission, it is essential that women in their forties across Canada be allowed to self-refer. If I had been able to self-refer, my cancer may have been caught earlier.
The consequences of delayed diagnosis for me may not end my life prematurely. However, the treatment effects are awful and my quality of life has been impacted. The chemotherapy may have damaged my heart and other organs. I needed surgery to remove the tumour and affected lymph nodes, 29 consecutive days of radiation and a full year of targeted therapy infusions. I am currently in my fifth year of hormone treatment, which causes achy joints, mood changes, brain fog and other unpleasant side effects. I'm lucky. I may live to old age. I may even live the rest of my life without a breast cancer reoccurrence.
When I was undergoing chemotherapy, I read the Pulitzer Prize winning book The Emperor of All Maladies, and there are four pages on the Canadian breast screening randomized controlled trial from the 1980s. I was so saddened to learn that it is widely known that the study was sloppy or maybe even fraudulent. The people involved explained the problems with randomizing patients, and still there is no indication that scientists, the University of Toronto or the journal CMAJ, where the study was published, are planning to retract the RCT.
I hope my story helps the committee in their important work. It is so reassuring that the people in your position care about the health and lives of women like me.
Thank you.