My Initiation Into a New World
It was in 2017, while I was still breastfeeding my boys, when I first felt the lump in my left breast. My kiddos were nearly 4 and 2 at that time. We’d had some experience, you see, with clogs, or clogged milk ducts. Over the years I nursed and pumped, the last two tandem breastfeeding both boys, I’d experienced both clogs and inflammation in that breast. When none of my tried-and-true methods of breaking up the lump worked, I asked for help.
My lactation consultant and primary care doctor were also pretty sure the lump was a clog, but because of my family history of breast cancer (my mother is a 15-year breast cancer survivor) I was sent for my first mammogram. I was 38. It was a bit of a struggle to get clear pictures because of all the milk in my breasts and, despite my best efforts, the techs were pretty annoyed at having to clean up the milk I sprayed all over the machine and the wall behind it. While the techs didn’t tell me what was going on, it was clear they were concerned and off I went to the breast surgeon for a biopsy.
A few weeks later we learned the biopsy came back positive for invasive ductal carcinoma. We also learned that my hormone receptors are positive for both estrogen and progesterone and negative for HER2. My breast surgeon delivered the news since my primary care doctor ensured that I got my biopsy done by a surgeon, and not a radiologist.
My primary care doctor and my breast surgeon were both incredibly kind and compassionate as I took in the information and attempted to make decisions quickly with a limited understanding of this new world I’d entered. I felt supported and guided as I went from having a doctor I saw once per year, if that, to having an entire team of doctors.
My radiation oncologist spent nearly 2 hours with me and my husband, answering all our questions and going over the bloodwork results. The medical oncologist was also very kind and caring, though I left his office thinking I wanted a different doctor because I experienced him as paternalistic.
After my lumpectomy, my surgeon sent off my tumor blocks for Oncotype DX testing. We discovered that I would need chemo because of the score. After my port was inserted by the same surgeon who performed my lumpectomy, I started Adriamycin (aka “the red devil”) and Cytoxin. The day after my first infusion, my medical oncologist called. I was super out of it and didn’t ask any questions when he told me that my bloodwork was off and he wanted to do more tests.
He didn’t say anything about tumor markers then. I wasn’t supposed to have a tumor marker test. The office made a mistake and checked the box for it. When they came back very high, I was sent for a bone scan and CT scan.
On June 22, 2017, his nurse called and said I didn’t need an appointment, to just come. It was terrifying and sobering and yet, we truly did not appreciate how much. That paternalistic medical oncologist was the one who delivered the worst news I’ve ever heard, with gentleness and empathy. He was as precise as possible and yet, looking back, he was also mercifully vague.
Turns out, I’d been stage IV from the beginning. In addition to widespread bone metastases, I had a 5 centimeter tumor in my right femur. It took a week to complete more tests (3 1/2 hours in a closed MRI machine was the worst part), and then I had titanium rods inserted into both femurs. Once I’d finished chemo, I had a complete hysterectomy. Genetic testing revealed I had the ATM mutation, a hereditary gene mutation similar to BRCA.
That was the end of “initial active treatment” for me. Our initiation into the world of cancer and treatment and doctors and tests and jargon was complete. We were left with a life that simply did not resemble what had come before; we had been through the fire and emerged irrevocably changed.
My first-line treatment after chemo was palbociclib (Ibrance). While it comes in a bag labeled “chemo,” it is actually targeted therapy, blocking or inhibiting CDK4/6 proteins.
My experience on palbociclib over the last 2 years has been mostly positive. I’ve been able to stay on the highest dose the entire time. I’ve been stable the entire time, and I now get a PET scan every 6 months rather than every 3. I’m grateful for that, really I am; at the same time, I think the researchers’ idea of “tolerable side effects” may differ a bit from those of us experiencing them.
The number one side effect I’ve experienced is low white blood cells (aka neutropenia). Others nearly as prevalent are fatigue, bruising, migraines, finger and toenail brittleness, diarrhea, and hair thinning. Frankly, between palbociclib and letrozole (Femara) and the fact that I have no more (or very, very little) estrogen, I feel much older than my chronological age.
I’m grateful for the science behind the medication I’m on now and the options I have once I have a progression. Very grateful.
I’m grateful for all the smart people who are working hard to solve the puzzle that is cancer. Very grateful.
I’m grateful for whatever ensures I get more time with my kiddos. Very grateful.
I try to practice gratitude, to stay in this headspace. There are so many different things to worry about, to ruminate about, to focus on. When I focus on gratitude and work on EMBRACING what cancer has brought to us, everything is better. I’m not burying my head in the sand. I just compartmentalize the really bad stuff for while the boys are in school or camp.
Abigail Johnston, 40, was diagnosed with hormone receptor-positive, HER2-negative metastatic breast cancer in 2017. She lives in Miami, Florida. She was trained as a Living Beyond Breast Cancer Hear My Voice volunteer in April 2019.
Whatever your experience, if you were diagnosed with HR-positive, HER2-negative metastatic breast cancer, you have options. You can learn more about tests and treatment options, like palbociclib, with this education tool created by a partnership of Living Beyond Breast Cancer, WebMD/Medscape Education, and our peer organization SHARE.