“Thank God for a Nightmare” – My Breast Cancer Story

Background: On November 7, 2023, I realized it was the one-year anniversary of my breast cancer surgery in Edmonton. My lumpectomy, or “segmental resection”, was performed after five long months of chemo treatments. I didn’t know going into surgery if the sixth and final chemo treatment had reduced the tumour’s size, or if the cancer was still in my lymph nodes. We wouldn’t know that until the pathology results came back post-surgery. I was scared going in, but I had done a lot of mental work visualizing the chemo dissolving the cancer cells, seeing the surgery going extremely well, and letting go of the anger and confusion I felt at a stage 3 diagnosis. How could it be in my underarm lymph nodes already when I had a mammogram every year as instructed by the Radiologist in Edmonton after a negative biopsy in 2018? One reason is that Triple Negative breast cancer is a particularly aggressive type of breast cancer. Despite a “clear” mammogram in Ottawa in February 2021, it’s possible a small tumour was present, obscured by dense breast tissue in the lower outside right breast because tumours and dense tissue both appear white on a mammogram. My 2021 Ottawa mammogram was stamped “heterogeneously dense breast tissue”, or breast density “C”. Since mammograms alone can miss about 30 to 40% of cancers in dense breasts, cancer found in dense breasts is often detected at a later stage, possibly making the prognosis worse. Was this what occurred in my case?

Two months later, in April 2021, while visiting Edmonton, I showed my long-time GP the Ottawa mammogram results and asked what the disclaimer stamped on it meant that read “Tumours less than 1cm may not be detected by a mammogram in heterogeneously dense breast tissue”. She said, “I can give you a requisition for a bilateral ultrasound”. Perhaps it was her lack of urgency, or my lack of awareness of the risk of dense breast tissue, or simply trusting that the Ottawa mammogram only two months previous was clear, but I didn’t go. To this day, I wish I had been equipped with the appropriate knowledge to make an educated decision. Would it have meant a Stage 0 or Stage 1 diagnosis? I will never know. If you have dense breast tissue, you can discuss supplementary screening with your doctor (having a bilateral ultrasound or breast MRI), – but what if you don’t know you have dense breast tissue, that having it is a risk factor, or if you don’t have a regular GP, or you self-referred?

My story is a textbook example of how NOT having supplemental screening for breast density C could result in a late-stage diagnosis within a year of a “clear” mammogram. One would assume supplemental breast screening, – a bilateral ultrasound or breast MRI, would be “standard” for breast density C and D across Canada. It is not. Unless there is something suspicious on your mammogram, it is unlikely you’ll receive supplemental screening, despite the fact mammograms can miss up to 40% of small tumours in dense breast tissue. Yes, you can discuss it with your doctor. The problem is, due to the national family physician shortage, a lot of women don’t have a regular family doctor. Also, most women are not even aware of the inherent risk of dense breast tissue masking small tumours. Like me, they may assume they’ll automatically receive whatever optimal screening may be necessary.

Symptoms: I offer my story as a cautionary tale in the hope it may save one woman from the ordeal of a late-stage breast cancer diagnosis. Regarding symptoms, in January 2022, while living in Ottawa, I noticed a heavy “burning” sensation in the lower outside part of my breast in what felt like my right pectoral muscle. I thought I had overdone the double poling while cross country skiing, yet this felt different. I could barely stand even fabric touching my breast. I dismissed it as breast changes due to menopausal hormone fluctuations. This went on for some weeks until one night in mid-March 2022, I experienced a frightening sleep paralysis episode with a vision of people in white coats coming toward me with needles as I covered my right breast with my hands. I awoke in a cold sweat to my husband saying “Wake up Dana, you’re having a nightmare!”. We did a breast exam the next morning and found a hard mass in my lower right breast.

I didn’t have a GP in Ottawa, just the MediCentre Doctor that I’d asked for the mammogram referral. Finding a GP in Ottawa, especially during COVID, was like winning the Lotto Max. So, I made an appointment with my longtime GP in Edmonton for mid-April when I would be visiting my senior parents for a month or so. Two weeks after arriving back in Edmonton, I received the confirmed diagnosis and knew I wouldn’t be returning to Ottawa anytime soon. Best to undergo treatment close to family and old friends, especially since my father’s health was in decline. The wheels were set in motion for the gauntlet of endless tests and appointments. After a lymph node biopsy, the diagnosis went from stage 2 to 3. I felt let down by “the system” when I learned that breast density is a significant breast cancer risk factor. For breast density C and D, why aren’t women automatically referred for supplemental screening in conjunction with their mammogram, just to be thorough?

Luck and Gratitude: Fast forward to November 2022. The surgeon and oncologist in Edmonton were ecstatic when the pathology results showed a near “complete response” to the six rounds of chemo. There were no cancer cells remaining in the five sentinel lymph nodes removed. That meant an “ALD” (axillary lymph node dissection), which involves cutting the axillary nerve, wouldn’t be necessary. I was relieved. I enjoy swimming and had worked very hard to master the front crawl swim stroke in order to complete an Ironman 10 years prior. When it comes to cancer, one is grateful for small mercies. Additionally, the pathology results found only a few tiny “islands” of non-dense cancer cells in the 4 centimeters of breast tissue removed. “As close to a complete response to chemotherapy as you can get, without calling it complete response”, described my Oncologist. I was very grateful, but still had 20 radiation treatments to get through. Having resided at my parent’s home in Edmonton during my year of treatment, I was grateful to be near my Dad in Edmonton during the last year of his life. He passed away five months after I completed my treatment, one month after his 80th Birthday.

My advice: Pay attention to intuitive feelings or dreams, and any changes in your breast area. Early detection can mean the difference between chemo or no chemo, lumpectomy vs full mastectomy, stage 0 or 1 early detection versus a stage 4 late diagnosis. Do your breast self-exams regularly, know your breast density, and request supplemental screening if you have density C or D. Educate yourself and talk about breast density with the women in your life, your GP or Nurse Practitioner, the mammogram technician, radiologist and any other women’s health practitioners. Invite them to visit densebreastscanada.ca

Every year, over 5000 Canadian women die of breast cancer. Sadly, many Canadian women receive a later stage 3 or 4 breast cancer diagnosis. There are a myriad of reasons, but one within our control is increased education and awareness regarding the critical role breast density plays in detecting small, early-stage breast cancer tumours in dense breast tissue level C and D. Mammograms can miss about 30-40% of cancers in dense breasts. That percentage can be reduced if women with dense breast tissue have a bilateral ultrasound, or a breast MRI, in addition to a mammogram. Your postal code or awareness of the risk factor of density shouldn’t matter. About 43% of women age 40+ have dense breast tissue. That’s a lot of women. Chances are good you are one or know one.

Dana, Edmonton, AB