Michelle Encourages Patients to Actively Participate in Their Cancer Treatment
As I looked at the pathology report bearing my name and the words “poorly differentiated ductal carcinoma of the left breast,” feelings of overwhelming dread set in, along with nausea. “Well Michelle, as always, you do it up big,” said my healthcare professional. “Your cancer is the worst, most aggressive kind.” He explained that poorly differentiated meant that I had a grade 3 tumor, the most aggressive grade possible. “And,” he said, “it’s triple negative,” meaning that my estrogen, progesterone, and HER2 tests were all negative. The combination of a highly aggressive and triple negative tumor, he explained, “limits your treatment options.”
I don’t really recall what he said after that, but I continued to hear him talking as thoughts raced through my brain: How could this be happening? I’m only 38 years old and I just lost my 33-year-old sister to breast cancer. My girls are only 14 and 10. My poor husband – what if he becomes a young widower like my brother-in-law? I’m a nurse who is supposed to take care of others, not be the one getting taken care of. Next came thoughts of my appearance: Would I lose my breasts? My hair? My life?
Then I stopped myself—I needed to rally, and quickly. I began a whirlwind of appointments, hearing about lumpectomy and mastectomy, chemo, radiation. “The final decision is yours,” they all said, “but lumpectomy with radiation will offer you the same cure rate as mastectomy.” In the chaos of fighting for my life, I listened to the recommendations of my providers—I had a lumpectomy, chemotherapy and radiation.
One thing I knew for sure was that I wanted every bit of information I could get about my tumor so that I could protect my girls from getting breast cancer. As a nurse specializing in obstetrics and gynecology, I had heard of a genetic test called BRACAnalysis. Even though no one on my treatment team had mentioned it to me, I told my primary care healthcare professional to order the test. I did not know at the time that I had some of the biggest red flags for having hereditary cancer: I was diagnosed under the age of 45 (as was my sister), and my tumor was triple negative. My test results came back with “variant of uncertain significance,” which was later classified as a “deleterious mutation on BRCA 1.”
Throughout my cancer treatments, this BRCA thing was always in the back of my mind. What did it mean for me in the future? What about the rest of my family? I decided to do some research on my own and was shocked to discover that I had a very high chance of getting a second primary breast cancer because of the mutation. Three years after my original diagnosis and treatments, I chose to have prophylactic bilateral mastectomies. Because I had previously had radiation, my only option for reconstruction was a bilateral TRAM Flap.
I am happy to report that 15 years have passed since my original diagnosis. I make it my mission to educate others about some of the often overlooked red flags for hereditary cancer and testing so that appropriate treatment decisions are made at the beginning of the process for each individual cancer patient. Many people, including some medical professionals, assume that testing for the BRCA gene mutation should only be done if the diagnosis is at a young age. Unfortunately, that is only one of the many reasons that qualify someone for hereditary cancer testing. Having a triple negative cancer like mine is often overlooked, but it is among the National Comprehensive Cancer Network’s guidelines for testing an individual or a family for hereditary disease.
I hope to inspire others through sharing my own story and experiences so that they can be better advocates for their own individual treatment needs and to inform themselves about the terminology and the tools used by healthcare professionals. As a patient, you are the most important person on your healthcare team and you should remember that the decisions you make from the beginning will affect you for the rest of your life. Ask questions, educate yourself and make sure that you have a clear understanding of your treatment plan.