It is overwhelming to go, overnight, from being a breast oncology nurse and caregiver to a patient with metastatic breast cancer. I devoted my career to caring for those with cancer. My passion for this work likely came from my experiences helping with the care of my dear grandmother.
My Grandmother, a Healer, and Breast Cancer
My grandmother was a beautiful person who was always ready and willing to help everyone. My family is originally from the Azores in Portugal. In the Azores, my grandmother was the nurse, doctor, midwife, healer, and friend. I often describe her as all these things, even though she had no official training, college degree, or even any education.
In fact, like so many in the country at that time, she never had any schooling and was illiterate. She also helped everyone who was ill or suffering, and delivered all the babies, including me and most of my siblings and cousins.
But she also had breast cancer, and by the time it was diagnosed, it had spread to her skin, liver, and bones. You would never know how much she was suffering, because she always had a smile that brightened the room. Many times, my parents, aunts, and uncles commented on how much I am like my grandmother— I am always the one called on and ready to help, just like she was.
Little did I know that I would be more like her than I wanted to be. At age 40, after graduating from nursing school, I had my first mammogram, and my cancer journey started. I was diagnosed with high-grade ductal carcinoma in situ, or DCIS for short. So, in July 2006, I had a left-breast mastectomy with a TRAM flap reconstruction surgery.
A sentinel node biopsy after the surgery confirmed that no cancer cells remained in my lymph nodes. The recommendation for surveillance was simply to do a mammogram on the right breast, because we do not do a mammogram on a reconstructed breast.
In November 2018, 12.5 years after my DCIS diagnosis, I noticed some swelling in my armpit on the breast with the reconstruction. I am a breast oncology nurse, so of course I would know if there was something wrong. The swelling was on my reconstruction side, so it could not be breast cancer, I thought.
But I was worried enough to ask one of the breast oncologists I work with to do an exam. Given my DCIS history, and because the swelling was on the reconstructed side, the oncologist was not worried, but she suggested that I see my primary care physician to order an ultrasound.
I saw my primary care physician the next day, and she too, did not think there was anything to worry about—after all, my history was “just DCIS,” and there is no breast tissue left, but because I am a nurse and I was concerned, she agreed to order an ultrasound.
The radiologist reassured me that it looked like a complicated cyst right behind the old sentinel node scar, but said that there was also a lymph node next to it that looked a “little abnormal, but nothing to worry about.” So we scheduled an aspiration and a biopsy for the following week.
But, I'm the Nurse
On December 20 (3 days later) at 6:30 PM, on my way home from a long day as an oncology nurse, I received the phone call that changed my life. My doctor was calling to tell me that the biopsy of what they had thought was a cyst, and the biopsy of the lymph node, were both positive for invasive breast cancer. This did not make sense. How could this be? There was no breast tissue on my left side.
The breast navigator in me went to work. I took a breath, and then asked all the questions that I would ask when navigating for one of my patients. I thought I had it all under control, but a few minutes after I hung up, it hit me.
How do I go home and tell my soulmate that we may not have a chance to grow old together? And how do I tell my children? What about my grandchildren?
I was petrified. “How did this happen to me?” I am the nurse, not the patient with cancer.
In one moment, I went from being a knowledgeable breast cancer nurse to a patient with breast cancer, with the same fear, anxiety, and questions that I witness in my practice every day when helping a patient with a new diagnosis of cancer.
The rest of the ride home, I rehearsed how I would tell my husband. I don’t remember much of that evening, except blurting the words, “My doctor called and it’s cancer.” I just remember him holding me while we both sobbed.
The next few days were busy with holiday preparations, doctors’ appointments, and tests. The surgeon and medical oncologist were sure that we would do surgery, maybe chemotherapy, depending on the final pathology findings, and radiation, and that everything would finally be good. But because it was in the lymph node, we would need to make sure it had not spread anywhere else before we could make treatment decisions.
What I learned is that even with a mastectomy, there is always some breast tissue left behind. Who would have thought that this could happen when the breast was gone after a stage 0 breast cancer surgery?
Being the Patient
Between Christmas and the new year, I continued to have more tests; one test led to another, then another. Every test seemed to give us more bad news. Eventually I had a bone biopsy, which confirmed that the cancer was in my bones.
On January 2, I met with the breast oncology team at the hospital where I work. I felt supported but vulnerable. I did not know how to be the patient, but I knew that for my family, I had to make sure to play the patient role and let my doctors explain.
My oncologist came into the exam room where I waited with my family and reported that all the final information confirmed that I did have a 1.4-cm tumor that was invasive breast cancer. The oncologists said that it had had likely started in the less than 5% of the breast tissue that was left behind, but that I was right when I thought that I saw more abnormal nodes on the ultrasound. In fact, the breast MRI showed that there was node involvement at level 1, 2, and 3 nodes in my axilla (or armpit), and that I had diffuse metastatic (spreading) breast cancer in many of my bones.
Despite all my knowledge, this was shocking news, and an extremely hard pill to swallow. The bad news is that there is no cure for stage IV metastatic breast cancer, but it is controllable, and many women live for many years with metastatic breast cancer.
My professional brain knows this, but my patient brain was devastated.
Shortly after the diagnosis, I started treatment with a drug regimen that included Ibrance, letrozole, Zometa, and Lupron—a regimen that many of my patients are receiving, and they are doing very well with it.
I have now been receiving this treatment for 20 months, and the cancer is showing great response. I know that this treatment will not work forever, and I realize that the cancer is smarter than me, and all the wonderful clinicians who are caring for me. I pray every day that it will work for a long time.
I know that this cancer will likely shorten my life, but for now I am optimistic about the future and hopeful that my treatment will give me many years. I live every day thankful for today and enjoy my beautiful life and a career where I feel honored and privileged to touch so many lives.
So, how has this diagnosis changed my career and my life? It has made me a better nurse, because I truly know what it is to have this diagnosis, and to live with metastatic breast cancer. It is funny, and maybe other people would think a little crazy, but my diagnosis is not just a curse; it is also a blessing.
I no longer take life for granted. I appreciate every moment, and am living my absolute best life. I feel even closer to my dear grandmother, whose bravery with breast cancer reminds me that I can do this, and that I am proud to be like her.