How my Oncotype shaped my breast cancer treatment

I am the daughter of a woman who has had breast cancer three separate times. She and I both received genetic testing and had no detectable mutations and despite that, we’re both breast cancer survivors. I’ve joked that my family history is a blessing and a curse and it’s just that.

I’ve always felt that breast cancer was a foregone conclusion for me because of my family history, I just didn’t realize that it was going to happen when I was 35 with two kids – ages 1 and 5 – during a global pandemic. Had my mother not been a survivor, I would not have enrolled in a high-risk screening program, and likely would not have had my first mammogram until I was 40, giving my tumor more time to grow and spread.

Because of that high-risk program, I received imaging every 6 months with alternating MRIs and mammograms after I found my first suspicious lump at age 24. When my tumor was discovered, it was small, contained, and had not spread to my lymph nodes (thank goodness!).

But at the same time I was being diagnosed, COVID-19 was taking over the world. I had fears that turned into anxiety about what that would mean for my treatment, and if I would be able to even get the recommended double mastectomy as hospitals cancelled surgical procedures left and right.

Sure enough, one day my phone rang, and it confirmed my fears. My surgery, scheduled for April 16, was too close to the projected peak of COVID-19 in Ohio and my surgeon was postponing my surgery. He suggested I start hormone therapy with tamoxifen instead and wait to have surgery until “COVID calms down.” My heart dropped and I immediately broke down.

Luckily, I saw my oncologist that same day and she felt strongly that my surgery couldn’t wait. I did not have any known lymph node involvement based on my scans and starting hormone therapy before the mastectomy could falsely lower my Oncotype DX score. The Oncotype DX is a genomic test performed on my tumor that predicts the likelihood of my tumor returning as metastatic disease. The higher the score (out of 100), the more likely the chance of metastasis. For me, a score of 18 or greater meant chemotherapy regardless of lymph node pathology.

As my oncologist was mapping out various treatment plans that would result after my pathology returned, I noticed some scenarios contained chemotherapy and others did not. I asked if there was a way to ensure I received chemotherapy. I felt that if we threw all the possible treatment options at my cancer, I would only have to go through it once. She sympathized with my desire to knock this cancer out once and for all but explained that studies showed chemotherapy would not change the risk of cancer returning even 1 percent if my Oncotype DX was below 18.

The tissue for the Oncotype DX testing would be removed during my double mastectomy, hence the reason surgery could not wait. Thankfully, that was the scientific argument my oncologist used to convince my surgeon to proceed without delay.

I had a double mastectomy with bilateral sentinel node biopsies on April 6. The lymph nodes came back negative – meaning the cancer was contained to my breast. All future treatment decisions would be determined by the results of my Oncotype DX test. After local pathology testing on my tumor was complete, it was sent to a lab in California for the Oncotype DX test, which I was told would take about 4 to 5 weeks.

That month of waiting seemed to fly by and crawl by at the same time. I felt blessed that there was no cancer in my lymph nodes, but I knew that I couldn’t really celebrate being “cancer-free” without knowing the Oncotype DX score. Waiting for the results was incredibly painful. It made preparing for the future incredibly difficult because I didn’t know if I was going to simply recover from surgery and return to work or if I needed to plan for 4 months of chemotherapy. Chemotherapy would also force me to make different childcare arrangements. I would have difficulty caring for them alone, at least when bouts of nausea, vomiting and fatigue overwhelmed me.

At the same time, COVID was taking countless victims, and my husband was an emergency department physician. I worried about the effect chemotherapy would have on my immune system and my husband bringing something home from work that would land me in the hospital.

The scenarios that ran through my head resulted in a depression and repetitive anxiety attacks. I would have good days where I was up and about, cheerful and happy; and then I would have days when I didn’t want to get out of bed, eat, or spend time with my children. I was terrified and I didn’t know how to talk about it. Those weeks of waiting felt like an eternity.

Finally, the day arrived.  Filled with apprehension and hope, I met with my oncologist to get my results. My Oncotype score was 14. That meant no chemotherapy; no radiation. My oncologist recommended 10 years of tamoxifen and congratulated me on being cancer free. The date was May 5, 2020. Cinco de Mayo will always be my cancer-free anniversary, and an amazing reason to celebrate.

Courtney Shihabuddin is a blogger, breast cancer survivor, and nurse practitioner in Columbus, Ohio. She is the founder of NP Courtney, an online support platform for young women battling breast cancer. She was diagnosed at age 35 with stage I hormone receptor-positive invasive lobular carcinoma and lobular carcinoma in situ. Courtney is using her experience of facing a life-threatening disease in her 30s to support and inspire young women to thrive in the face of adversity.