Survivor Story: Madison Jones

At an age when most people are just starting out on the path to adulthood, Madison was dealing with a stunning diagnosis: Chordoma, an extremely rare type of bone cancer. We want to thank Madison for sharing her story, and we hope it inspires you as much as it did us!

In August of 2013, I started college and I also landed my first job at a restaurant. That same month, I had emergency surgery to repair two compression fractures in my neck and to remove the tumor that had caused them. Initially, the doctors believed that the tumor was benign, but further analysis from a few different hospitals proved that this invader was malignant. On September 11, 2013, I was diagnosed with Chordoma, a rare type of bone cancer. I was 18 years old. The next few months were a whirlwind for my family and I. The prevalence of Chordoma is one in a million, with three hundred cases diagnosed annually. Only a few hospitals in the country are specialized to treat this form of cancer, so we decided to head to Massachusetts General Hospital in Boston. This last year consisted of eight rounds of chemotherapy, thirty-nine rounds of proton radiation, and three highly invasive surgeries for me.

This Christmas, I received the all clear! There are no new tumors and no evidence of regrowth. I’m missing a few more bones, as well as a full head of hair, but I am blessed to have my life.

My dad found out about the Cancer Support Community. I was very hesitant to go. Hesitant is probably  an understatement. My dad had to practically drag me there and I’m glad he did. I joined the Young Adult’s group and my dad attends a men’s caregiver group.

The Cancer Support Community gave me a safe place to share my experience with a group who would understand. They provided me with tools to manage the stress and the uncertainty and I also believe they led me to acceptance. I am part of a great group of people. We laugh, we cry, and we are there for one another, which is so valuable since cancer can be a lonely experience.

It took me a few months before I went to group. I did not want to think about cancer more than I already had to. With that said, I suffered in silence for longer than I should have. Sometimes, the only thing you have control over is your perspective. I guarantee my journey would have been a lot more difficult if it were not for the Cancer Support Community. They offer a wide range of emotional resources. I encourage anyone dealing with cancer to utilize this wonderful resource. You won’t know if attending group is your “thing” unless you try.

In my free time I volunteer at a ranch that rescues horses and provides equine therapy to various groups. I love to read and I enjoy spending time with my friends and family. I also like watching documentaries and listening to music.

The Young Adult Support Group is provided free of charge to people with cancer age 18-40. The group meets on the first and third Monday of each month at 7:00pm in Westlake Village. Please call 805.379.4777 prior to attending. This is one of many free support groups provided by the Cancer Support Community Valley/Ventura/Santa Barbara (www.cancersupportvvsb.org).