A new calling -- so my story doesn't become your story
In November of 2017, I was diagnosed with Stage IV breast cancer two months after an “all clear” mammogram and ultrasound. My cancer was found quite by accident after abnormalities were seen on a routine DEXA scan. “We see something strange in your hip bones, and you need to get an x-ray,” they said. At that point, I honestly didn’t think too much of it, telling myself that likely it was just age-related wear and tear. But after the x-ray technician asked, “Does it hurt?” I knew it had to be something serious, but what? I was immediately alarmed and very puzzled, and I began to get scared.
The diagnosing process continued with a series of blood tests, a CT scan, and two tests for multiple myeloma over a period of four very long weeks. During that time, I became more and more impatient, confused, and worried. Slowly but surely, I was also developing a sense of impending doom that my life was about to change forever, and not in a good way. A bone biopsy would ultimately tell the tale: stage IV lobular breast cancer.
One night not long after my diagnosis, I stayed up late after everyone else had gone to bed, and I decided to read through the medical information on my patient portal. The PET/CT scan report read: “FDG PET scan images show multiple sclerotic lesions diffusely throughout the proximal femurs, pelvis, sacrum, thoracic and lumbar spine, ribs bilaterally, clavicles bilaterally, scapula bilaterally, proximal humeri bilaterally, cervical spine, and skull” – with a note about breast density in the upper outer left breast where the original tumor lives. I was horrified, terrified, a little angry, and completely dismayed.
What was the upshot? There was lobular breast cancer in almost every bone of my body, and a 3x5 cm area of cancer in my left breast which had been invisible on the mammogram and ultrasound.
I certainly was shocked. How could this be possible?
The culprit, it turned out, was my breast density. I learned that I was like almost half of all women whose dense breast tissue makes it harder to see cancer on mammograms. It’s also a risk factor for developing breast cancer in the first place.
For women with dense breast tissue, a mammogram is like shining light through concrete… There are great limitations.
-- excerpt from Probably Benign, Chapter 1
As I began my initial treatment (Letrozole and Ibrance) prescribed by the Mayo Clinic, I pored over the research about the failure of our current breast cancer screening standards. I resolved I would work for the rest of my days to help other women to get the breast cancers screening they need. I committed to the idea that my story won’t become anyone else’s story. We can do better, and if we can, then we must. Too many women’s lives are at stake. I had found a new calling.
While at the Mayo Clinic, I had learned about an emerging technology called molecular breast imaging (MBI) that more accurately identifies breast cancers in women with dense breasts than mammography alone. I wanted to help advance this technology so more women could get their cancer found early, while curable. So, I decided to fundraise for the Density Matters Trial by walking 500 miles across Spain on the Camino de Santiago, an ancient Christian pilgrimage that people have been walking for over a millennium. In my “previous” life I had adamantly sworn that I would never do fundraising. Asking other people for money was simply not my thing. But cancer changes everything, and it certainly had changed my mind about fundraising. I now had a cause that I felt very strongly about – so strongly that it overshadowed any trepidation that I had raising money. Ultimately, I trekked 40 days on that life-changing hike and raised $110,000.
“But why not just raise money on Facebook or something, that will be safer and easier for you, right?” friends and acquaintances asked. As if to say I had the dreaded “C word” now, so I really should just take it easy. I appreciated those comments as they served to fuel my determination all the more.
As everyone who has had cancer or is currently living with it knows, cancer is no easy journey, and I knew there were going to be rough times ahead. I wanted to walk those 500 miles to muster courage, to gain both physical and mental strength, and to prove to myself that I could do hard things. With every passing day on that long hike, I became more and more sure that I could confront what’s to come and make a difference for women coming after me. By the end of the pilgrimage, I was resolute.
Feeling even more empowered upon my return, I then formed a nonprofit called My Density Matters whose mission is to empower women to learn their breast density, know their options, and get the additional screening they may need. My team and I envision a world where breast density no longer hinders the early diagnosis of breast cancer. We achieve our mission through local, in-person events; through ambassadors, online, and targeted information campaigns; and through other organizations and corporate engagements. We empower women to go beyond the standard and pursue the screening they need to find any breast cancer not visible through mammography alone.
I am in no way happy to have stage IV breast cancer, and I can’t quite find it in me to say I am “grateful.” However, I am as invigorated as I have ever been about my new calling.
I am incredibly fortunate that my first line of treatment that I started 4 and one-half years ago before my Camino de Santiago journey is still working. I feel good and remain in remission. Onward with life, and onward with my new calling -- so my story doesn’t become your story.
Do you know your breast density? Do you have dense breasts? If so, are you empowered to speak with your doctor about essential additional breast cancer screening? Learn more at mydensitymatters.org.