Why Choosing "Active Surveillance" is a Viable Option for Early Stage Breast Cancer
Updated: Jan 27, 2020
When I received the news that there was a "favoured low-grade neoplastic lesion" in my right breast I wasn't clear on what that was. What does "favoured" mean? That there "might be"? That there might NOT be? And what is a low-grade neoplastic lesion anyway? The pathology reports from the two biopsies that had followed several mammograms and ultrasounds, were confusing and full of contradictory and indecipherable information that left me feeling uneasy and with more questions than clarity.
When it was highly recommended that I proceed with a lumpectomy and possible radiation to remove the stage 0 cancer cells (as I later learned was the more accurate term), cells that could be invasive or remain in-situ, something in my gut didn't feel right. Instead, it felt like a drastic measure for something that was later described to me as “a very small and extremely slow growing malignant mass in my right breast". A mass that, as I also learned, could go unnoticed for ten years or even the rest of my life if it remained dormant and unchanged. To me, it just didn't make sense that there wasn't an option other than surgery at this point that. And after learning that a lumpectomy had the risk of leaving my breast disfigured (as this surgeon had explained to me), I was even more adamant that surgery was not a path I wanted to take unless or until it was absolutely necessary.
Hearing about the possibility of breast disfigurement further empowered me to dig deeper into what I was being told. Many women that I shared my situation with said they would not hesitate to “just get it out of there and be done with it”. I completely understand and respect this choice. For me though, my intuition kept urging me to slow down, dig deeper and do some of my own research. Surgery did not feel right at that point as I felt uninformed of all the facts and information that were necessary for me to make a confident decision about how to proceed.
I started reading my pathology reports in depth, trying to make sense of the many pages before me. I began researching everything I could get my hands on about early stage breast cancer. Much of what I discovered confirmed what I felt in my heart to be true; that with the advancement of mammogram and ultrasound screening technologies, breast cancer can be detected very early, early enough to save many lives. But this same technological advancement (and the push for routine screening beginning at age 50) is also causing unnecessary alarm due to over-diagnosis. This over-diagnosis of breast cancer is leading many women to take immediate and drastic action who needn't be doing so.
“Estimates of over-diagnosis vary from 30 per cent in the Cochrane Collaboration 2013 report to 55 per cent in the 2016 update from the Canadian trial and 54 per cent by the United States National Cancer Institute.” (National Post, October 2017)
I decided that I wanted to find another way (and another surgeon) to confront what I was facing, something other than immediately going under the knife. According to a study done by Dr. Steven Narod of the Woman's College Hospital of Toronto, "Early stage DCIS patients have the same risk of dying of breast cancer, just over 3 percent within 20 years, as women in the general population". ("Stage 0 Breast Cancer - When should you wait and see?" Chicago Tribune 2015)
Advocating for myself is not one of my strong suits. Yet after reading numerous articles that described exactly what I was questioning about my test results and treatment plan recommendation, I felt a push to take a stand for what I believed to be true, that proceeding with a lumpectomy was not crucial at this point. I wanted to find a different surgeon, one who would honour my desire to pursue an active surveillance approach to my treatment instead of removing the cancer cells surgically in six weeks time, as I was initially scheduled for.
Luckily this is exactly what I found when I remained insistent on getting another opinion. The second surgeon I went to see was completely on board with my desire to proceed with a “wait and see” approach, scheduling a repeat mammogram for six months from my original diagnoses to monitor the growth or decline of the malignant cells. She had zero concerns that this was a risky choice, indicating that the cells are extremely slow growing (if they were to grow at all) and that waiting and watching would pose no health risk to me.
I left her office feeling confident of my decision and proud of myself. Proud for doing what felt best for me, regardless of what most of the medical community seemed to feel I should do. Going against the grain of our traditional medical system is not easy. Yet I believe it’s time we take the results we are given, the medications we are being bombarded with and the treatment options that are being presented to us as opinions and information, not unwavering absolutes, especially when our own inner guidance is nudging us to think otherwise.
** please read my six month follow up appointment results in my blog post titled “Active Surveillance Follow Up for Early Stage DCIS”.