When the breast cancer subtype is HER2-‘Who Knows’

After Rebecca Rioux was diagnosed with breast cancer, doctors told her it was “HER2-equivocal,” meaning it was unclear whether or how much HER2-targeted therapies would help her. 

Hi everyone! Rebecca Rioux here, 11-year, two-time breast cancer survivor! I was first diagnosed with stage I breast cancer at 23 years old. I was so overwhelmed with the possibility of getting a breast cancer diagnosis that the whole testing process is a little bit of a blur. Both hormone receptors and HER2 were tested off the biopsy so there was a little discomfort and just some bruising following that procedure. My test came back hormone receptor-positive but HER2-equivocal. My oncologist decided to give me trastuzumab (Herceptin) along with my chemo without any additional test because of my age. [Editor’s note: Younger women diagnosed with breast cancer are more likely to have HER2-positive breast cancer than older women, and more at risk for recurrence.]

It was scary because I felt like they were throwing everything at me. It was good that we have so many treatment options, but scary because I was getting them all and no idea how I was going to tolerate them. Herceptin was given to me for a year, so after the chemo was done there were still infusions every 3 weeks for the rest of the year. I felt pretty discouraged after chemo because I was so excited I was done, but then I wasn't really done with that infusion room yet. I had virtually no side effects from Herceptin. I felt flu–like symptoms after the first one and after that I didn't feel anything. I did have to have a few more tests on my heart prior to getting Herceptin and after it was complete [because heart problems are a rare but serious side effect]. After finishing, another test was just another step in the process and wasn't anything too tiresome.

The fear of recurrence never leaves a cancer survivor and unfortunately I had a stage I recurrence at 25 years old. This time my cancer was HER2-negative. Who knew? Was it the same cancer and I was HER2-negative all along or was this a new cancer? No one can really say...

It's hard to identify yourself as a breast cancer survivor, or even as a cancer survivor at all. Some even label themselves within the specifics of a breast cancer survivor: triple-negative, young survivor, metastatic survivor, HER2 or hormone receptor-positive survivor, etc. I guess I would be a really young, hormone receptor-positive, HER2-“who knows” survivor. But I think most importantly we are all survivors. Our path of treatment may be very different but we have all dealt with getting a cancer diagnosis and no matter how old or young we are, cancer has changed us. Cancer has for sure changed me. I am stronger, definitely less scared of needles, just as claustrophobic in MRIs, but most importantly: I am a fighter. I am lucky that my treatments have ended: Some of us will be on treatment for the rest of our lives. Now that I am so many years out of my last treatment the fear of recurrence is still there but doesn't rule every day of my life. I get blood work and imaging every 6 months and let me tell you, those are stressful weeks, especially because I now have a little one to think about. Life at 34 is different than I ever expected it to be but now I am so grateful for every day I get.

Rebecca Rioux is 34 years old. She lives in Northern California with her husband Kevin, a son, Graham, two dogs and a cat. Rebecca works as a nurse for Stanford Health Care, in Palo Alto.