Five-time cancer survivor shares her wisdom
March 14, 2016
Li-Fraumeni syndrome survivor: 'Don’t let cancer define you'
BY Lainie Jones
I had adrenal cancer as an infant in 1985, so the word ‘survivor’ has been part of my vocabulary my whole life. Even though I was too young to remember what I went through, my dream was to help other kids like me by becoming a pediatric oncology nurse.
At age 22, I started to focus on a career in nursing. I also turned into a full-time hypochondriac, which ultimately saved my life.
Facing cancer as an adult
Two weeks before starting nursing school, I was diagnosed with stage II breast cancer. I was just 24 years old. After so many years in remission, I never thought I’d face cancer again.
At that point, I changed my focus from becoming the nurse I had always dreamed of becoming to the patient I did not want to be. I had a lot of scans, tests, lost my hair and ultimately had a double mastectomy. Losing my hair was hard for me at first, but I quickly realized that it’s only hair and that hair grows back.
Through it all, I stayed positive and just kept going.
My Li-Fraumeni syndrome diagnosis
Since my breast cancer diagnosis at 24, I’ve had thyroid cancer, melanoma, and most recently, sarcoma. (Yes, I’ve had five primary cancers.) I recently finished chemotherapy for the fourth time and am bald for the third time.
After my melanoma diagnosis – my fourth cancer diagnosis -- I was sent to MD Anderson, where I was diagnosed with a rare genetic mutation called Li-Fraumeni syndrome. This syndrome affects only 500 individuals in the U.S. It means that cancer will be a permanent fixture in my life.
Learning I had Li-Fraumeni actually put me at ease. I finally understood why I kept getting cancer. With this genetic information, my doctors know to monitor me very closely, which I am thankful for.
Finding empowerment in Li-Fraumeni syndrome and cancer
Even though I know I’ll face cancer throughout my life, I won’t let cancer and Li-Fraumeni syndrome define who I am. Instead, they empower me. Cancer may have kept me from going to nursing school, but I’ve still turned my diagnosis into a purpose to help others.
Today, I work for the American Cancer Society in New York City as the assistant manager of Hope Lodge. Every day I wake up excited to go to work. People always ask how I’m able to work with other cancer patients without letting my job affect me as a survivor. But as I tell them, my work strengthens me and reminds me how lucky I am. I love listening to survivors share their stories with me. Most have no idea I am a survivor, but I share my story when the time is right. I want to be approachable and don’t want anyone to feel they can’t talk to me. I want other patients to feel inspired and know that there is hope.
As I tell them, I found my hope at MD Anderson, which is even more magical than Disney World in my book (and I’m obsessed with Disney World). I share that I travel to MD Anderson every three months and that I had to live there for three months during my radiation treatment. I know how it feels to be away from home and your family during cancer treatment.
But as I tell the survivors I meet, what I love most about MD Anderson is that my treatment is based on my needs as an individual, not the last patient they saw. And with a genetic condition that makes me one in a million, my personalized treatment gives me hope and life.
TopicsMelanoma Cancer Recurrence Radiation Therapy Skin Cancer Breast Cancer Sarcoma Childhood Cancer Issues Thyroid Cancer Hereditary Cancer Syndromes Survivorship Treatment Adrenal Gland Tumor Soft Tissue Surgery Chemotherapy
I stayed positive and just kept going.