My Terminal Breast Cancer Was Misdiagnosed for a Year

Tori Geib as told to Zee Krstic
·5-min read
Photo credit: Tori Geib
Photo credit: Tori Geib

From Good Housekeeping

The author receiving chemotherapy in September, and later snapping a pic in her wig.

Tori Geib is a writer and food blogger living in Bellefontaine, Ohio, with her family and her dog, Georgie. Diagnosed with de novo metastatic breast cancer (cancer that's already stage 4 at the time of diagnosis) in 2016, she's receiving treatment at the Stefanie Spielman Comprehensive Breast Center in Columbus. She advocates for breast cancer research and funding on behalf of multiple organizations, including Living Beyond Breast Cancer and the Susan G. Komen Foundation.

Having chosen to change careers in my late 20s to become a chef, I had accepted that aches and pains are part of the job — regardless, I loved what I was doing. Serving families a delicious meal is a great passion in my life, and feeling tired and sore at the end of a shift was par for the course.

That's why at first, five years ago, I really didn't think about my chronic back pain. Then one day I managed to somehow fracture my collar bone while doing routine tasks on the job. Doctors took CT scans of my back and body, but initially said nothing major was going on; maybe fibromyalgia at worst. I didn't even think to ask for a report.

A year later, I was laying in bed, and felt something pressed up against my side. I thought I had fallen asleep on my cell phone and reached over to grab it — except it wasn't there. All I felt was a hard lump on my breast.

Photo credit: courtesy of subject
Photo credit: courtesy of subject

Since breast cancer ran in my family, I pushed for a mammogram at a local clinic — just turning 30, I was much younger than the recommended screening age. Later, at a big hospital in Columbus, an oncologist diagnosed me with metastatic breast cancer de novo. The doctor explained that I had stage-4 breast cancer that had silently spread to my spine, bones, and other organs long before I was diagnosed. This was the real reason why my back was hurting and my bones were so weak. The CT scan a year prior, after my fracture, had indeed shown evidence of cancerous lesions on my spine, but doctors had overlooked signs that pointed to cancer.

How testing may have saved my sister

My mom has been a nurse for 30 years, and she became my advocate. Within the first few weeks of my treatment, we learned that my breast cancer had also metastasized in my lungs, liver, spine, and various bones. I also underwent germline genetic testing (which looks for gene mutations in DNA), revealing that I had the BRCA2 cancer mutation on my father's side. Although initially I was on hormone therapies due to my specific cancer, learning about my mutation allowed my doctors to choose a PARP inhibitor as a treatment.

Because of my diagnosis and the fact that my paternal grandmother had also had breast cancer, my sister, Sarah, got tested for the gene as well. She, too, carried the gene. Her mammogram first indicated she was cancer-free, but she still wanted to do a preventative mastectomy, to cut her risk of developing breast cancer. Doctors discovered cancerous tissue on the operating table; it turns out she already had ductal carcinoma in situ (DCIS), considered "stage zero" cancer, which can be difficult to see via imaging.

I thought our combined ordeals would be enough to convince most women (and men!) in my family to get screened, but some say that they don't want to know if they have a higher risk of cancer. Personally, I wish I had known I was a carrier. Earlier screenings and subsequent genetic tests may have dramatically impacted my prognosis, and perhaps my cancer wouldn't have had time to silently spread throughout my body.

I'll never be done with treatment

I don't count down chemo or radiation sessions as so many cancer patients do. I count up. Because my cancer is metastatic, I know I will never be done with treatment until I go into hospice.

Photo credit: courtesy of subject
Photo credit: courtesy of subject

I spent almost two years on an oral hormone drug, stable in my condition, before my doctors noticed my cancer had progressed. Genomic testing, which looked at how my cancer's DNA had changed in my body, showed that I had developed a new mutation that leaves me resistant to hormone therapies that had previously worked well.

Now, repeated genomic testing ensures that my treatment is current as my breast cancer mutates. It allows my providers to target my treatment, which has kept me alive longer than they expected—4 and a half years and counting. (The 5-year survival rates for those with metastatic breast cancer hover just above 25%, and the median prognosis is 36 months). Recently, I've had some radiation to help ease the pain in my bones. I've also learned that the cancer has metastasized in my brain, so I'm currently undergoing brain radiation to kill tumors, as well as chemo to prevent further spread.

Photo credit: courtesy of subject
Photo credit: courtesy of subject

Looking ahead

The term palliative care is often associated with dying. But pain and symptom management has helped me live a life over the last four years that I never thought possible. I've been able to travel and spend time with my family, and have had the strength to become an advocate for all those living with breast cancer. Harnessing every aspect of holistic treatment, such as mental health care (I've recently begun working with a therapist), has brought so much peace to my own life as I continue my treatment. Mitigating patients' suffering as we live, not just at the end of life, is so important.

Integrating a team of palliative providers into my own treatment, to see my plight as a whole and not just on cancer's terms, has been crucial. My hope is that more patients look beyond the stigma of palliative care, so that they can focus on their lives and not just on their diagnoses.

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