Even before my breast cancer diagnosis in early 2002, the year was shaping up to be life-altering for me and my family. We had moved from Seattle to Houston for a new career opportunity for my husband and were just settling into our new home when I felt a pea-sized nodule in my left breast during a breast self-exam. I have always had small fibrocystic breasts and was familiar with their lumpy terrain, so I knew immediately this was a change I couldn’t ignore.
My anxiety over potentially having cancer was heightened by the fact that I had to quickly find a physician and schedule a mammogram and most likely a tissue biopsy. Even in my worst-case scenario, I didn’t imagine how bungled the process would turn out to be. After the mammogram, the radiologist performed a tissue biopsy that left me bruised and in pain—and that set the stage for more difficulties to come.
Overcoming the Trauma of Cancer
Two weeks later, I received the news I had been dreading: I had stage I hormone receptor–positive breast cancer. Although the cancer was detected at an early stage, my oncologist proposed aggressive treatment that included a lumpectomy, followed by six rounds of fluorouracil, doxorubicin, and cyclophosphamide chemotherapy, 6 weeks of daily targeted radiotherapy, and 5 years of the hormonal therapy tamoxifen.
The chemotherapy regimen was so debilitating, I had to be hospitalized for low blood cell counts and was left me so weak and fatigued that it took me a year to recover from its physical assault. The emotional assault from cancer and its treatment and the fear of a cancer recurrence took longer to get over. However, by the fall of 2004, I felt well enough, physically and emotionally, to return to my teaching career.
Coping With a Misdiagnosis
Over the next decade, I focused on maintaining my health, raising our two sons, and getting on with my life. We moved to Tucson, and I went to graduate school and began working on a master’s degree in education, putting cancer in the rearview mirror. But cancer wasn’t through with me yet.
In 2014, a routine mammogram found a recurrence in my left breast and a new primary tumor, invasive ductal carcinoma, in my right breast. Although the diagnosis was unexpected and scary, I mocked cancer. “Go ahead,” I told it, “hit me again.”
I resolved to get through this latest disappointment and steeled myself for what lay ahead, certain that the diagnosis meant surgery to remove both breasts and, I feared, more chemotherapy. What I didn’t expect was a diagnosis—as it turned out, a misdiagnosis—of stage IV cancer, which was the darkest day of my life.
To determine the extent of the cancer, my oncologist ordered a series of imaging scans, which showed lesions on my spine. Previous scans taken years earlier during my first diagnosis had also shown spine lesions, which a bone biopsy determined to be benign, and I assumed those records had been forwarded to my current cancer center, but they had not been included in my medical history. Based on the results from the new imaging scans, the tumor board decided what they were seeing was breast cancer that had spread to my bones—stage IV breast cancer.
I was devastated. I started trembling and crying and went home to plan my funeral.
Gaining a Reprieve From Death
The decision was made to do an additional imaging scan, a positron-emission tomography test; it did not pick up any suspicious bone lesions and gave me the first glimmer of hope that I did not have metastatic breast cancer. “We are going to let this go,” said my oncologist. “There is no need to do another bone biopsy.”
As relieved as I was to learn I did not have stage IV cancer, I was also incensed that more diligence had not been taken to provide me with an accurate diagnosis. Not once during my discussions with my oncologist did she ask me if I had any bone pain or backaches or whether I had had prior spine scans. She—and the tumor board members—just assumed that what they were seeing on their imaging scans was metastatic disease without confirming it with additional tests or a review of my medical history. The experience taught me the importance of being a self-advocate in my cancer care and inspired me to become an advocate for other breast cancer survivors as well.
Getting a Second Opinion
As expected, I had a contralateral mastectomy and was relieved to learn that neither cancer had invaded nearby lymph nodes. Despite the fact that the cancers were confined to my breasts, my oncologist recommended adjuvant chemotherapy. However, given the previous mistake regarding my staging, and remembering how ill I was from chemotherapy after my first diagnosis, I opted for a second opinion. The consulting oncologist assured me that the additional benefit I would derive from chemotherapy was so small—just 3%—it wasn’t enough to outweigh the risks from the treatment. Her opinion reassured me that my instinct not to have chemotherapy was correct and gave me peace of mind to concentrate on my next hurdle: getting through the breast cancer surgery and overcoming the psychological trauma of losing both breasts.
I’ve taken what I’ve learned from my cancer experience and launched a nonprofit foundation to educate other breast cancer survivors about their options for breast reconstruction after a mastectomy.— Terri Coutee
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From the moment I was told I needed a contralateral mastectomy, I made the decision to have DIEP (deep inferior epigastric perforators) flap breast reconstruction. Some survivors decide not to have reconstruction surgery, and I respect that decision. Going through the process of finding a surgeon and undergoing the surgery and then recovery is arduous, but for me it was worth it.
Living a More Purposeful Life
Today, I remain cancer-free, but the disease has permanently altered my life and shifted my priorities. I am living a much more purposeful life now and am more aware of how our individual actions affect others. I’ve taken what I’ve learned from my cancer experience and launched a nonprofit foundation to educate other breast cancer survivors about their options for breast reconstruction after a mastectomy.
I’m using the skills I’ve acquired as a lifelong educator to help others recover from the trauma of cancer. It’s the most rewarding work of my life.
Ms. Coutee, who lives in Seattle, is the founder of DiepCfoundation (diepcfoundation.org), a nonprofit organization that provides education and resources to help breast cancer survivors make informed decisions about their options for breast reconstruction following a mastectomy.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.