In the Metastatic Breast Cancer (MBC) community we introduce ourselves to each other with an “elevator speech”. It’s pretty similar to any breast cancer person’s bio: name, age diagnosed, sub-type, surgeries/treatments, and years since diagnosis. But in the MBC world our portfolios get fuzzy, long, and complicated. Most people in the MBC world are Stage 0, 1, 2, or 3 breast cancer patients who then have an MBC recurrence (usually bone/organ) – sometimes months, a few years, or even decades later. They have already been through the emotional and physical hells of diagnosis, surgeries, and treatments just to be told it was all for naught. They are not cured. They now have a terminal illness. Then you have this group of people who find out they have Stage 4 MBC from the beginning, or de novo – a true “Go Directly to Jail – Do Not Pass Go, Do Not Collect $200” experience.
That’s me, I’m Erica Griffiths. I was 38 years old and breastfeeding my then-16-month-old daughter, Izzy. I was diagnosed with ER+, PR+, and HER2+ (triple positive) breast cancer tumors that covered about 8 cm in my right breast, a 1.5 cm lesion on my liver, ate a hole through my L3 vertebrae, and eventually was found on the neck of my right femur. I had a quick and complete response to 4 rounds of TCHP (Taxotere, Carboplatin, Herceptin, and Perjeta). No surgery. No radiation. My treatments were not curative, but palliative, and we would keep the cancer at bay as long as possible until newer and better treatments were available, or until I had no options left. But at that moment I was considered NED (no evidence of disease) because no cancer was big enough to show up on scans. NED meant that for well over 2 years the drugs were working and my cancer was taking a giant nap. I still lived scan to scan, uncertain when my cancer would awaken, what damage it would do, and how it might shorten my life.
During this period of “calm”, I did everything I could to learn about my disease and people like me. I went to conferences to hear about the newest treatments and began using my voice to educate others about MBC. I wanted to be a patient advocate not only for myself but tried to help my friends find resources, second opinions, and troubleshoot side effects. I learned quickly the complexities of this disease and would keep mental records of friend’s profiles for future reference. I’ve always had a great memory, a passion for connecting with people, and a knack for matching needs with possible solutions. Leave it to cancer to help me find life direction (insert 50 sarcastic emojis).
A few months after my second cancerversary, I found a lump in my right breast. Could this be my first progression? My oncologist and I agreed that we wanted this sucker out. I had a lumpectomy and we sent a sample off for genomic testing. My oncologist and I played a mental ping pong game of various next steps. All this became a moot point when the pathology came back. The tumor was triple negative. This switch means the hormones and HER2 receptors that had driven my MBC disease was not feeding this new cancer in my breast. Was this a new primary cancer or a mutated recurrence? We would likely never know. My oncologist suggested adding chemo. We had to assume I still had triple positive MBC in my body. We would have to treat everything at once, hoping we nipped this local recurrence, keeping the difficult to treat sub-type from metastasizing. I sought out a second opinion of a well-known triple negative breast oncologist and researcher and we decided on an older chemo – CMF (cyclophosphamide, methotrexate, and 5 fluorouracil) for 6 rounds, while continuing my regular MBC infusions and injection. Let’s just say it was a LONG day in the chemo chair.
I lost about 30% of my hair in the end, had NED scans after chemo, and celebrated with a 10-mile walk/run. My genomics testing on the tumor pointed to a daily pill called Afinitor that targeted 2
mutations. We would add this drug to my maintenance regimen after my trip to Tampa. On the second day of vacation I had a seizure. A SEIZURE. A brain MRI showed 2 small lesions on my brain. Breast cancer lesions. My medical team back home grew to include a neuroradiologist and a neurosurgeon. I underwent stereotactic radiosurgery (SRS – or as I like to call it “Zap-a-dee-doo-dah”) to the 2 small spots. That very same week I found another breast lump, right next to where the triple negative tumor had been. It seemed impossible – I just finished chemo. I had a NED scan. Although I never knew the sub-type of my brain lesions – I just knew in my heart that this new breast tumor was going to be triple negative again. We decided on another lumpectomy and more genomic testing. I was right – it was triple negative. But this one was different. This one was metaplastic. I know, I didn’t know exactly what the hell it was either except metaplastic was found in <1% of ALL breast cancer cases. Of course. My cancer was officially HANGRY. It’s been creative in finding new pathways to survive. The genomic testing pointed to Afinitor again. We decided on whole right breast radiation but we followed a new protocol being tested in Europe. High dose, once a week treatment for 5 weeks, with a booster 6th session for the aggressive metaplastic. Two months after my brain zaps I finally got good news – both spots drastically shrank. I just finished breast radiation. I have CT scans next week to find out if everything below the neck is also behaving. Not everybody’s cancer is as snobby as mine but it goes to show how complex this disease can be, the need for precision medicine, how much further we have to go, and the importance of MBC research.
Written by Erica Griffiths, Tigerlily MBC ANGEL Advocate