Katie Diagnosed at 28

"It didn't really sink in at first, and I wasn't sure what metastatic meant - that was something I had to find out on my own."

Neurofibromatosis. Harder to say, harder to live with. But what is it? NF (for short) is a rare genetic condition that affects one in every 3000 births. It is more common than cystic fibrosis, hereditary muscular dystrophy, Huntington's disease, and Tay Sachs combined. And yet it’s still a complete mystery to the medical field. NF causes (mostly) benign tumors to grow along the nerves. By the time I was 10, I’d already had six surgeries, one of which was to remove a tumor from my spinal cord, leaving me with two fancy rods in my back. Although most tumors are benign, people with NF have a higher risk for developing cancer in their lifetime.

When I was 27, I noticed a lump on my breast that was different than my NF lumps. After calling probably 15 breast doctors, and getting turned away by each one because I was “too young”, I was finally able to get into Planned Parenthood where the doctor just dismissed it as my condition. But I know my body and I knew this was something else. Five months later I ended up in the ER, not being able to breathe. After emergency surgery to remove over two liters of fluid from around my heart, and two weeks in ICU, I was diagnosed with Stage 4 metastatic breast cancer. It didn’t really sink in at first, and I wasn’t sure what metastatic meant - that was something I had to find out on my own. I’m still here, seven months after being diagnosed, kicking cancer's ass. I’ve learned a lot these past seven months; not to take things too serious, get rid of all the things in life that make you unhappy, and just live your life. Something I always tell myself “I have cancer. Cancer does not have me.”

Are you a survivor, spouse, friend, or caretaker with a story to tell? We'd love to hear from you.

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