Listen to HER2: Metastatic Diagnosis Ended My Breastfeeding Journey Early
Erica Giffiths was diagnosed with hormone receptor-positive, HER2-positive de novo stage IV breast cancer in 2016, at age 38. At the time, she was breastfeeding her 16-month-old daughter. For Listen to HER2, Erica writes about how her diagnosis affected her experience of motherhood.
I chose my daughter’s name — Isobel Anya — about 18 years ago when Joe and I dated the first time, long before she would actually be born. Isobel is the name of a Bjork song, and Anya Seton is my favorite author. Joe’s and my long distance relationship, pre-cell phones and Facebook, failed. We went our separate ways and were each married for the next 10 years — yet serendipitously found ourselves back together again, and neither had children. I moved from Florida to Pennsylvania to be with him. We have known each other such a long time, yet falling into marriage, house, and baby took us longer than you might think. I am a planner and I cautiously orchestrated when and how to make these momentous leaps. I was 37 years old when Isobel was born in January 2015.
My mother breastfed all four of her children. My sister breastfed my niece. I knew I was destined to breastfeed my little Izzy. I was surprised at the challenges: Izzy was small and slow to gain weight, and I had yeast infections, milk supply issues, and of course what would end up being 17 months of biweekly clogged ducts. Eventually we found our groove and bought a house in Delaware. I was laid off right before Thanksgiving 2015 but found a job 4 months later, in April 2016. But before that, I skipped my annual Pap test appointment in March because of insurance issues.
After the move, Izzy started nursing primarily on my right side – maybe 75 percent of the time, so my right breast was a different size than my left most of the time. I was subject to regular clogged ducts. Sometime in the spring or perhaps in February I noticed a dense area, where a cluster of benign cysts had been hanging out for almost 20 years, leading to a regular regimen of mammograms starting in my early 30s. I had a clear mammogram in 2012. My OBGYN recommended we skip 2013 (I was young and had no family history). I was pregnant in 2014, breastfeeding in 2015, still breastfeeding in 2016 … and then there was this thing. I tried unclogging this duct. I ignored it. I watched it. I began to marvel at the pace at which it grew and then made an appointment to see my OBGYN.
On May 17, my OBGYN said that whatever it was, which now took up about 50 percent of my right breast, could be breastfeeding-related, but suggested an ultrasound. By June 1, I had been diagnosed with breast cancer – stage 2, grade 3, maybe stage 3 after we biopsied more.
I then had many other tests, including a nuclear bone scan. By the time I was driving home from the bone scan, I got a call that three places “lit up.” I was literally radioactive when I got home and hid upstairs in the bedroom while Joe distracted Isobel. It was the first time I couldn’t nurse my baby before bed. We found out that I was triple–positive, meaning the cancer grew because of the hormones estrogen or progesterone, and the protein HER2, and would be on trastuzumab (Herceptin) which can be a bugger on the heart. After more tests, Joe and I were taken into the “bad news room” and were told a CT scan showed metastasis to my spine and liver. Doctors seemed particularly concerned about the liver.
The next day I went in for a liver biopsy and to get my port. I was sore but tried to manage with ice. That was my last night ever nursing Izzy to sleep. The next morning I brought her to bed with me and nursed her while we both slowly woke up. It was June 16 and time for my first scheduled chemotherapy appointment. I took pictures, trying to freeze this moment in time, although most pictures were lost months later when my phone died. My mother flew up to help take care of me and distract Izzy. She didn’t understand why she couldn’t have her “boobies,” why if she gained access and nursed, she would be poisoned by the chemotherapy in my breast milk. My little 17-month-old would scream and claw at my sports bra while I fell in and out of sleep on the couch. It was my roughest chemo cycle by far, but the docetaxel (Taxotere), carboplatin (Paraplatin), Herceptin and pertuzumagb (Perjeta) did its job. After one single cycle my gigantic breast tumor shrank down to a small lump, which is the same size it is today, over a year later. We think it is just scar tissue and my oncologist believes Herceptin and Perjeta did most of the heavy lifting.
My metastatic diagnosis was and is devastating. For all my planning and motherly instincts, I am unable to promise Joe and Izzy that I will be here for them. Having my breastfeeding journey end so unnaturally broke my heart. Because I am HER2-positive, I fear every day that I will progress and the time with my toddler daughter will be shortened. There is a flip side though – for everything I feel this disease has robbed me of (and will rob my family of) – I have now, today. I can make a difference in my life and everyone around me.
I am on a mission to raise funds for METAvivor to help fund metastatic research. I also help raise funds for Team CMMD, a local running group/cancer charity that supports local families affected by cancer. I ran the 10-mile 2017 Broad Street Run in Philadelphia this year with my team who raised over $1 million for the American Cancer Society in just 4 years. I am working with the UMass Breastmilk Lab to donate breastmilk that I froze before and after chemo. They are studying the possibility of identifying cancer markers in breastmilk. I plan to donate tissue to the Metastatic Breast Cancer Project. I am finding that in a world where I feel so out of control with aches and pains, anxiety, insomnia, scanxiety, side effects (who loves the Herceptin nose drip and Perjeta itch?) that giving back, doing something tangible, makes me feel alive and … happy. I have seen the very best side of humanity since my diagnosis.
Isobel is the light of my life. I miss those innocent moments. The first time I put her to bed after the first round of chemo, I rocked her with a sippy cup, trying to mimic our old routine. She still finds comfort in my breasts. When she gets hurt or is upset I will hold her and rock her in my lap and her hand goes straight to my boob. I wanted to preserve our unique bond so I had two breast milk necklaces made – one for each of us. Each is made with my breastmilk and a lock of her hair. Our life is not easy, and it will surely get harder and more complex, but what better inspiration could I hope to have?
Erica Griffiths is 40 years old. She lives with her boyfriend, 2-and-a-half old daughter, and dog in Wilmington, Delaware and works as a marketing operations manager for a software company. Read more Listen to HER2 stories here.
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