Long before we had ever heard of Li-Fraumeni syndrome, cancer was cutting a swath of destruction across the generations of my family. When my father died of a brain tumor at 37 years of age in 1966 everyone agreed it was tragic, but no one had any real answers as to how such a thing could have happened. Opinions ranged from divine will to plain old bad luck. There were no answers when my sister suffered through three different cancers, ultimately passing in 1993 at 32, or when my daughter, Kerry was diagnosed with an osteosarcoma in her right leg at age 12 in 1995, enduring over a dozen surgeries to save her limb and her life.
It wasn’t until another of my daughters, Maureen, was diagnosed with an adrenocortical carcinoma and was gone within five months (at age 18) in 2003 that someone suspected LFS and urged our family to be tested. Back then there was little in the way of information sources to which we could avail ourselves and what we did learn came from individual doctors’ knowledge and experience or else from scholarly papers we found online, many of which were written for an academic audience, making for some difficult reading. We were on a strange, frightening journey and had no road map to help us navigate through whatever trials might lay ahead of us, but at least we were starting to get answers.
Kerry was tested shortly after Maureen passed, and it came back positive for LFS. Knowing this, Kerry underwent a prophylactic double mastectomy, and when she got married, she was able to have her eggs harvested and tested. Despite her mastectomy, Kerry was eventually diagnosed with metastatic breast cancer and died in January of 2014, but because of the precautions she was able to take with regards to her pregnancies, both of her daughters are negative. Awareness is key and knowledge is power.
It wasn’t until the Summer of 2014, when I was already 57 years old, that I began presenting with my own cancers, but forewarned is forearmed, as the saying goes, and they were discovered early and successfully treated. Today I am being followed closely with regular imaging, blood tests and physical exams, and, though I still live with the daily anxiety that feeling any lump or pain might be a ‘here we go again’ moment, the fact that I know what I’m dealing with and what needs to be done about it gives me the confidence that I will be around for some time to come. And when I do go, I have the satisfaction of knowing that it’s going with me.
