Don’t you want to know the survival rates?
In the early days after my first diagnosis, I struggled to come to terms with the reality of cancer while the phone rang continually to schedule appointments. Treatment cannot proceed until the oncologist determines whether the cancer has spread to other parts of the body, the migration or process known as metastasis. Scans and biopsies are common elements of the staging protocol, which is how we learn where we fit in the cancer matrix – Stages 1, 2, 3 or 4.
I traveled to Houston for an evaluation at the MD Anderson Cancer Center, the home of the oldest and most comprehensive specialty clinic for Inflammatory Breast Cancer in the United States. My phone, equipped with an app for the patient portal, became a tracking device for appointments. A mammogram, ultrasounds, CT and bone scans, an echocardiogram and several biopsies popped up on the calendar. I needed an evaluation to determine if the cancer was indeed inflammatory because that would alter the treatment plan. I held out hope that it wasn’t.
Two local doctors had already informed me that I had Stage III cancer, even though I asked several times if it could be Stage II instead. “No,” came the polite but firm response. An MRI revealed a 13-centimeter tumor and a lymph node biopsy confirmed that cancer had already traveled outside the breast, landing me squarely in Stage III territory. The question was whether it had spread beyond the lymph nodes immediately adjacent to the breast, which would push my diagnosis out to a Stage 3 C or the dreaded Stage 4.
The oncologist at MD Anderson ordered several additional biopsies on suspicious lymph nodes, including in my neck, the latter of which stretched my coping ability to the limit. A positive biopsy result would mean that the cancer had escaped the local breast area, suggesting a poor prognosis. On top of that, the radiologist told me I needed to remain completely still “so we don’t hit your carotid artery.” Needless to say, this got my full attention. Overtaxed by stress, anxiety eclipsed every effort to maintain control. Focusing on a calming visualization or practicing deep breathing offered no relief. I tried recalling favorite locations in great detail and reminded myself that I had already made it through numerous biopsies without incident. None of it worked. I assigned myself a mental task, which involved thinking of every possible word that started with the letter “A” and then “B” and so on. That did the trick and somewhere around “G,” the biopsy was finished. I was immensely relieved when those results came back negative, my first good news since diagnosis.
The rush to line up staging appointments contrasted sharply with the dulled machinations of my overwhelmed mind. I slept poorly and felt emotionally raw, unable to understand how a healthy person like myself suddenly fell prey to a deadly disease. Worries clambered for attention day and night; how well would I tolerate chemo and would I remain healthy enough to continue working, would looming medical debt ruin my credit rating, and what sort of future lay ahead if any.
I found it hard to face the facts myself, let alone share them with others. Until I finished radiation ten months later, only my family and close friends knew I had Inflammatory Breast Cancer. I was concerned that if I told people, they would google it and conclude I wasn’t long for the world. Over a year passed before I began to confide in friends about the size of the original tumors in my breast, 13 centimeters, 7 centimeters and 2 centimeters. When I was first informed about the extensive masses, I experienced a personal earthquake. My psyche shook and a fault line emerged which forever cleaved my life into “before” and “after.” I realized that I was in deep and there was no easy way out. It took a very long time before I could comfortably discuss diagnosis-related details.
During this bewildering time, supportive friends sometimes asked questions that unwittingly escalated my anxiety. A frequent inquiry was about staging and some on social media thought nothing of asking, “What stage is it?” I was in no condition to respond. A year after diagnosis, I still choked on the words, “Stage 3B.” My life had convulsed at the core, and only time would allow for the shock to settle and things to re-adjust to a new reality.
During the staging period, I met with the surgeon to plan for the mastectomy approximately six months hence. While waiting for her, my sister and I sat in a room with an ambitious, young Fellow (a physician in training to become a specialist). She mentioned her pending graduation, and we congratulated her with sincerity. Then she asked if I wanted to know the five-year survival rates for Inflammatory Breast Cancer. I did not. She seemed eager to impress us with her newly acquired knowledge and, clearly disappointed, she tried again. My sister and I held our ground and she reluctantly kept quiet. Veiled by the arrogance of youth and health, she was dying to tell me how soon I might die. She failed to comprehend that her knowledge of statistics represented my living, breathing life and I was in no mood to hear about when the curtain might fall. With all the fervor of a new convert, she prioritized shock and awe over patient care and compassion. Each five-year data point in her research represented a fellow human being whose life was forever changed by the words, “you have cancer.”
What actually helped me withstand the tumultuous weeks of staging procedures were other breast cancer survivors. These women formed an exquisite chain of grace and encouragement, paying forward the support they experienced in the early-going after their own diagnoses. They offered tips for getting through chemo, mailed head wraps, and sent touching cards. Most importantly, they inspired confidence. They had all walked a similar road and each had made it through to the other side. Whenever I got nervous about a new treatment or procedure, I reminded myself that if they had done it, I could too. Nearly everyone told me that the weeks between diagnosis and the onset of chemo were the hardest; the shock of an upended life bled into the uncertainty of the staging process. Once treatment got underway, things would settle into a routine, which is exactly what happened for me. A fellow IBC survivor, four years into her cancer experience, told me she wouldn’t erase the disease from her life even if she could. Despite a relentless struggle, cancer had delivered many gifts, including increased closeness with her family. I remember being incredulous at her words and couldn’t imagine ever saying the same myself. She was right and I came to understand her wisdom in time.
In memory of Johna Platero 1955-2019