During my final semester of college in New Orleans, 1200+ miles from home, a life-changing call came. My mother was in the hospital, waiting for results of a biopsy of a tumor she’d found in her breast. My father told me that she’d already decided, if the tumor was malignant, she would proceed with a radical mastectomy. In the middle of rehearsals for an on-campus musical, I told the director I would have to leave for a few days. He threatened that, if I missed rehearsals, I’d have to be replaced. That didn’t faze me in the least. This was my mother.
I was on the next flight home to Washington, DC. By the time I arrived at her bedside, my mother was awake and alert. She was in such a Zen zone, not at all bothered by the procedure she’d undergone. She explained it to me this way: It was an easy decision to make, get rid of a breast to save her life. She made it sound logical, so simple, very straightforward.
With that, she began survivorship in a very open, bold, and decisive way. The love and care my father demonstrated as she healed remains emblazoned in my memory, almost 40 years later. My mother’s kick-ass attitude, focused like a laser beam on recovery and building her strength, was inspirational. Although I didn’t know it at the time, she was teaching me lessons about love, life, and health priorities that would last a lifetime. She and my father were in the audience to see my on-stage performance, just a few weeks after her surgery!
As proud as I was of her determination and grit, a deep-seated fear gripped me. I would, someday, be diagnosed with breast cancer. I knew this truth. It’s a fear that crested and waned over time.
It's that fear which drove me to my first mammogram at age 28, much earlier than the recommended age 40. That fear that drove me to begin annual mammograms, and keep up an almost perfect record, until 2017. Almost 35 years after my mother’s cancer diagnosis, I was called back to the radiologist’s office after my mammogram; there was something unusual on the film.
After a second mammogram, I spoke to the head radiologist in person, who told me about their specific concern. I am a fact finder. I wanted to know exactly what they saw. Without hesitation, she explained that the shape on the film had sharp edges. That’s when I learned malignancies tend to have sharp corners whereas benign tumors have smooth, rounded edges. I’d never heard that before and have never heard that since. Maybe patients should talk to their radiologists more; we all might learn something.
“What’s the next step?” I wondered out loud. The doctor and I chatted, she wanted to get me in for a biopsy asap. She didn’t want my case to get caught up in the inevitable delay that would hit in October, Breast Cancer Awareness month.*
For those seeking care from breast specialists, the timing was most unfortunate. What she said next absolutely floored me. If I would come in the next day, with a good book to read, she’d find a way to squeeze me in, possibly during her lunch hour, for the biopsy. Here was a doctor who made me a priority. This was patient-centered care in action.
The view on the second film revealed sharp edges. What hit me was the clear image of what looked like a central American pyramid. Of course, we had to wait for biopsy results, yet I knew, based on the radiologist’s experience, this was cancer.
As primary caregiver for my mother who, by this time, was in the mid/late stage of Alzheimer’s disease, I was always juggling, juggling. The next week, as I sat in my parked car waiting for a nurse to evaluate my mother for hospice care, I received a call from the radiologist, the test results were back. It was definitive. It was cancer. Hearing that wasn’t as much of a shock as I thought it would have been. I’ll admit hearing the news was a bit of a relief. The diagnosis I’d feared since age 22 had finally arrived at age 56. I was surprised, though not shocked. I was freaked out, big time.
I needed information to make good decisions for my health, my future, and for my son’s future. At this point, I needed to find out two things. Did I carry a mutation of either of the BRCA genes? What was the likelihood of cancer in the other breast (film was indecisive)?
In 2014, one of my life-long friends (we’d known each other since 5th grade) died of metastatic inflammatory breast cancer; a dear co-worker died of metastatic triple-negative breast cancer; and my mother was diagnosed with her second breast cancer. I’d spent an inordinate amount of time that year thinking and reading about breast cancer.
Genetic testing to the rescue! To answer that first question, I sought genetic testing to identify any mutations that would reveal a high likelihood of cancer. To answer the second question, I had to set up another needle biopsy (though not with my original radiologist – mistake, more on that later). The genetic counselor walked me through results, which revealed no genetic mutations. Whew! What a relief.
About that next biopsy. This time, it was a more complex procedure, an ultrasound needle guided biopsy. It was THE MOST painful procedure of all those I endured during this timeframe. Because I’d anticipated the pain (friends warned me of the real deal), I was angry with the doctor, because I’d asked her, prior to the procedure, if we could stop if I was in too much pain. She assured me she’d stop if I asked her to. The pain was unbearable. I begged her to stop. She did not. This is the only time a clinician didn’t follow through as they’d promised.
But wait … there’s more. At the same time I began visiting breast oncologists for recommendations on how to proceed (I got 4 opinions!), I was dealing with an anticipated hysterectomy. I had problematic uterine fibroids for over twenty years, which hadn’t been cured by the latest and greatest laser procedure. I’d asked the radiologist’s office to share the breast biopsy results with my gynecologist. The next time my husband and I headed into my gyn’s office to discuss the planned hysterectomy, I off handedly mentioned the cancer. He didn’t know. This is when I learned that I should check and double check all communications assumptions.
The cancer diagnosis changed the scope of my gyn surgery. After an intense conversation with my gyn surgeon, we decided to remove the ovaries, too. That was an easy decision, though an unanticipated one. I was feeling good about my surgery, robotic and laparoscropic. It was now November. I was still shopping for my breast oncologist, but at least I’d made a firm decision on the hysterectomy and oophorectomy. As it turns out, a biopsy of tissue taken during the surgery revealed removal of the uterus was the only cure for the undiagnosed, hereditary condition. Go figure.
Shortly before Thanksgiving, I found my breast surgeon (my Barbie Dream Date). Though I’d bounced back and forth between lumpectomy and mastectomy, reconstruction or not, I finally landed at bilateral mastectomies with DIEP flap reconstruction.** She was the only surgeon who asked to see my mother’s biopsy results (I’d taken them with me to each consultation). Note to self: the surgeon who cares enough to review your mom’s records is the one.
My breast surgeon (the fourth I’d interviewed) recommended a fantastic plastic surgeon (the third one I’d met). He was a young doctor who’d been in practice just a few years. In fact, many of my breast oncologist’s other patients declined to work with him because of his youth. His age made him more appealing to me. With a vascular sub-specialty, I hoped he’d be open to trying something I’d only read about: transplant of a donor nerve. One of the chief complaints I’d heard from mastectomy patients is the loss of sensation in the breasts. I wanted to avoid that fate.
The journey from bilateral mastectomies and placement of tissue expanders (January 2018) to DIEP flap reconstruction, which is a two-surgeon, 8-hour procedure (April 2018), to revision surgery (September 2018) was tough, but necessary. At one point, I thought I’d go flat, though when I realized I’d wear prosthetics every day, I changed my mind and decided to go with the DIEP flap procedure. The best part of this decision-making is that it was fully shared with my plastic surgeon. I’d appear in his office with lists of questions (over 20 questions at a time), which he patiently answered, one by one, in every appointment. During one meeting, he sketched out the surgery nerve resection and donor procedure, step-by-step. The time I took to find the perfect match paid off. I couldn’t have been happier. Did I mention? He gave me his personal cell number and told me to call him anytime. Kismet.
Once on the other side of the mastectomies, another doctor was added to the mix, a medical oncologist. Tissue taken during the surgery had been delivered to a specialized lab in California for the Oncotype DX test. This is important because it helps the medical oncologist determine recommendations for radiation therapy. My preference was to avoid radiation, so I was extremely thankful that my oncotype results fell in the range for which the recommendation is no radiation.
Next up … five years of hormone treatment. After a rough start with my medical oncologist (the ONLY time I’ve cried during this process!), I asked my breast surgeon to help me find another medical oncologist. My new medical oncologist, who has an amazing personality, is seeing me through to the end of my treatment, when I will no longer be required to take Tamoxifen – February 2023.
I am picky, and though generally trustworthy, I ask a lot of questions. Trust but verify might best describe how I approached each step of this journey. Being one’s own advocate is critical for making it through a cancer diagnosis, subsequent treatments, and survivorship with confidence. I follow my gut instincts, though readily admit those instincts were built on the foundation of lessons taught by my mother, my friends, and learned from extended family members’ own cancer experiences.
I realize I’m lucky because I have great health insurance. I have wonderful friends who supported my decisions and would talk to me when I was having doubts or wanted to run scenarios. One of my life long friends flew in from Colorado to be with me immediately following my mastectomies. My husband and son were with me every step of the way. Along with them, my cadre of cousins, aunts, and uncles were the support network I needed to get me through all of this.
As I move closer to the end of treatment, I realize my years of fear of a breast cancer diagnosis created unwarranted stress and gave me decades of unnecessary anxiety. My best advice is to ask questions every step of the way, don’t rush into any decisions, and trust yourself. Ask for help when you need it. Know your priorities. Pro tip: When diagnosed, be sure to ask your oncologist if there’s a clinical trial you’d qualify for.
Be your own best advocate. You deserve it.
*Launched in 1985, National Breast Cancer Awareness Month is observed by the medical community, which continues to honor the seriousness of the need for breast cancer education and awareness. Many breast cancer survivors resent commercialization of their disease by retailers, sports teams and the like, often referring to it as Pinktober and pink-washing, and not in a friendly way.
**DIEP (deep inferior epigastric perforators) flap surgery is a cutting-edge breast reconstruction procedure that uses a flap of complete tissue - blood vessels (perforators), skin and fat - from a woman’s lower abdomen as donor tissue.