How Screening at 40 could have changed my story….

My name is Julie. I live in Ontario with my husband and our 2 amazing kids, ages 19 and 16. I am a mother, a wife, a daughter, a sister, an aunt, a cousin, a friend, a high school math and science teacher, and in February 2023 I became one of the 1 in 8 women diagnosed with breast cancer. I was 49, ate a healthy diet, exercised regularly, was rarely sick, and to my knowledge, had no genetic history.
My story begins in January 2023 when I found a hard unusual lump in my breast. I examine my breasts from time to time, nothing formal, just enough to know the regular lumps and bumps. I started to do so over the last few years after having many friends diagnosed with breast cancer, all in their 40s. Some are survivors but others have tragically lost the battle, leaving behind loved ones and a life that was cut brutally and unfairly short. I cannot imagine if I followed the Task Force Guidelines which advises against self-examination because I would not have noticed the new lump and taken the steps to have it investigated.

Once I noticed the lump, I debated about going to my doctor. I felt nervous and unsettled, but since I tend to be a worrier at the best of times, I found myself thinking, “I am probably over-reacting, I’m sure it’s nothing”. I also tried to tell myself that I was too busy to go as we were in the middle of exams at school, “I don’t have the time”. However, both my husband and I agreed that we would let the health professionals determine if it was something to worry about or not. After hearing many stories of women who have had their lumps dismissed as “normal” and sent on their way, I will be forever grateful that my doctor sent me for both a mammogram AND an ultrasound. They were both done within the next week and shortly after I was called back and informed that a biopsy was needed for an area of concern. My heart sank, my anxiety magnified. During this time, I did my best to stay busy and resume normal life, the distraction of everyday life was a welcome break from my growing fear. Two weeks later I received the dreaded phone call from my doctor and as my husband and I sat in the office, I heard the words nobody ever wants to hear, “You have cancer”, the biopsy was positive for cancer, Invasive Lobular Carcinoma, and in that instant my world was turned upside down.

I felt numb, terrified, upset, angry, confused, how could this be happening? I had shed a lot of tears over the past month, usually when I was alone with my thoughts anticipating what could be….and now here we were, about to live through that worst case scenario. The next few weeks felt surreal. Normal life carried on but then sprinkled into normal life were these very heavy and real parts of cancer – sharing the news with our kids and our families was devastating, my heart ached. There were appointments with specialists to discuss the details of my cancer and my options, MRIs and other imaging, and all the new jargon that goes along with breast cancer, Estrogen and Progesterone Positive, HER2 negative, Invasive Lobular, extremely dense breasts, to name a few.

Throughout this process I learned that I have category D dense breast tissue, and that Category D placed me at a higher risk for breast cancer. If this was a risk factor, why didn’t I know about it? Because I had never had a mammogram until I found my lump at 49 years old, and a mammogram, read by a radiologist, is the only way to determine breast density. You see, the Canadian Task Force guidelines do not recommend mammograms before the age of 50 unless you are deemed high risk or have a first degree relative whose cancer diagnosis occurred in their 50s or earlier, and so I did not qualify. As a result, many women in their 40s, like myself, are completely unaware of their breast density and the increased risk it carries for breast cancer. Like me, they are left to find it on their own, at which point it has progressed to a size that is large enough to be noticed, and likely more advanced than it would have been if detected earlier through regular screening. Additional screening methods are needed along with mammograms for women who have dense breast tissue to accurately detect cancer. This is because both cancer and dense breast tissue appear white on a mammogram, making it difficult to identify cancerous growths. If the guidelines were changed to screening at 40, women would have mammograms earlier, learn about their density (a measure of your breast density will be included in your mammogram screening report) and be monitored more frequently with the appropriate screening modalities.

The first step in my treatment plan was surgery. On April 20th, I had a single mastectomy. MRI imaging done prior to surgery had estimated my tumor to be 2 cm, however, after surgery the pathology reported a much larger tumor of 6 cm AND a second smaller tumor. I was in complete shock at this news, and sadly I am not alone, this happens to many women. In addition to having dense breast tissue, I have Invasive Lobular Carcinoma which is often referred to as a “sneaky” cancer. Although this is the 2nd most common type of breast cancer affecting 15% of women, it is a type that is more difficult to detect through imaging because of the way the cancer grows in lines rather than clumps. Women with lobular cancer are often diagnosed at later stages. It is important to know that this type of cancer does not usually present itself as a lump, but instead can be a hardening and thickening in the breast, along with other changes in the breast. What I felt initially seemed like a lump to me but as time went on the hard mass seemed to spread out, becoming larger and thicker. I had my first appointment with my oncologist at the end of May. We learned that the larger sized tumor meant that my treatment plan would now require chemotherapy, something that I was not expecting. I was angry and upset thinking about how much further advanced my cancer would have been if I hadn’t self-examined and been aware of my “normal” lumps, if I hadn’t gone immediately to my doctor, and if I hadn’t been sent for both a mammogram and ultrasound, but also at that fact that if I had begun screening at 40 and been aware of my breast density my cancer might have been caught earlier.

My chemotherapy included 8 rounds of treatment, every 2 weeks, from July to October. My last treatment took place on October 16th, one week before my 50th birthday; not the way I had envisioned turning 50. On my last day of chemo, surrounded by my family, I rang that bell louder and longer than I expected. I had been in battle mode since the day I found that lump and in that moment, ringing the bell unleashed a mix of emotions that had been part of the journey….the fear, anxiety, uncertainty, doubt, sadness, pain, loss, tiredness, anger and overwhelm, but also the strength, determination, relief to be done this chapter, hope, and so much love and gratitude for my family, friends, my body and mind, and for the life that I am living. I had a few weeks to recover from my final chemo treatment before starting the last phase of my treatment. In November, I had 15 rounds of radiation and started a medication called Tamoxifen, used for hormone positive cancers.

I won’t list all the side effects that I’ve experienced from the various treatments, but I will say that each treatment is terrifying in its own way. Each carries its own set of risks, side effects and recovery. Despite being given the long list of side effects there is so much uncertainty. You don’t know which ones you will get until they happen, how severe they will be and how long they will last, with many side effects lingering on well past the end of the treatment.
I have one more surgery in September and will continue to be on hormone therapy for 5 to 10 plus years to reduce my risk of recurrence, but at this point I am happy to report that I am considered to have “no evidence of disease”. I am grateful to my healthcare team for the care and treatment I received over the past year and a half. While I am beyond relieved to be on the other side, this next chapter comes with its own host of challenges.

The Canadian Task Force argues that screening at 40 causes unnecessary stress and anxiety that comes with call backs and waiting for results. Let me just say that there is no comparison to the stress and anxiety that accompanies a cancer diagnosis and all that comes with it including: the heartache that comes with telling your children their mom has cancer, your spouse, your parents, enduring cancer treatment in the form of surgery, chemotherapy, radiation, medication, side effects from treatments, years of medications to prevent recurrence, side effects from medications, living with the fear of recurrence and metastasis, losing your hair and parts of your body, having to take a leave from work, and the list goes on. It is a life altering diagnosis that affects your physical, mental and emotional health. While it was stressful waiting for the results from my biopsy, it would be even more stressful and dangerous to delay a cancer diagnosis.

Lowering the age of screening to 40 is essential to detecting cancer earlier. Evidence shows that an early diagnosis leads to a better prognosis and can reduce the need for aggressive treatment. We also know that treatments for advanced stages of cancer are significantly more costly. I am only one of thousands of Canadian women who had a more advanced stage of cancer because of these outdated and flawed recommendations.

If my screening began at 40, if I was aware of my breast density, if I received regular mammograms and ultrasounds because of my breast density, there is a good chance that my cancer would have been caught earlier. While I can’t go back in time and it is too late to change how my story began, it is not too late to do what is right by Canadian women and make the recommendation to screen at 40. I want the future of breast cancer and the fate of a breast cancer diagnosis to be different for my daughter, all the women in my life, and for all Canadian women.

I hope that by sharing my story I can help to raise awareness about the importance of screening at 40, self-exams, and knowing your breast density. I encourage you to self-exam to know what is normal for your breasts, how they look and feel, and to be aware of the different signs of breast cancer. There are many apps and websites with excellent tutorials and reminders for monthly exams. If anything is new or different, get it checked out! It is also important to know your breast density. If you have category C or D dense breasts speak to your health care provider about your options for additional screening. As of October 8, 2024, in Ontario, you will no longer need a requisition for a mammogram and can self-refer starting at age 40 by calling the Ontario Breast Screening Program. Thank you to Jennie Dale and Dense Breasts Canada for their amazing advocacy work.

DBC Note: Julie, our deepest gratitude for your powerful write up of your experience. Not only have you given others a glimpse into the challenges you faced and overcame, but you are giving them a chance to learn information that can make a difference in their lives. Thank you for your openness and for shining a light on this disease with the hopes of helping others.

Women 40-49 in Ontario can call to book their own mammogram starting October 8th at 1 800 668 9304. No requisition is needed. Women in BC, PEI, NS, NB, YT, NL can also self-refer at 40 and it’s 45 in AB and NWT. SK starts in Jan.