Oral cancer survivor just asks: Take a moment to save a life

Amber Young reflects on her experience with clear cell odontogenic carcinoma, and she remains grateful for a dental office saving her life against oral cancer.

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Amber Young

By Amber Young, Oral Cancer Survivor

In early 2015, I was a happy, healthy, 35-year-old wife and mother. My family needed to find new medical and dental practices after we relocated. Lo and behold, a $99 new patient coupon for a new dental practice in town showed up in my mail, and I booked my entire family for appointments.

That was the day my dentist saved my life. That’s not something you hear very often. My dental team offered a panoramic x-ray and an oral cancer screening, which both revealed a “dark spot.” The staff took the time to capture additional x-rays, and to assist in booking me an appointment with an oral surgeon for better imaging. The “dark spot” ended up being a tumor the size of a golf ball growing inside my right mandible, slowly breaking my jaw while pushing the nerve out of the way.

This absolutely blew my mind. I was a healthy 35-year-old, nonsmoker with no pain, no symptoms, or any sign that anything was wrong, let alone a giant tumor breaking my jaw. I had a surface biopsy and was told that the tumor was benign, but I needed to remove the whole tumor for further testing.

When I walked into the treatment room at my consultation appointment after the surgery to remove the tumor, I was greeted by six doctors and several interns who lined the hall. As I looked at my family sitting on the window sill in front of me, I knew the conversation was going to be different from what I expected.

The doctor began by giving me all the details of my diagnosis, clear cell odontogenic carcinoma. There have been less than 80 cases in the entire world. Chemo and radiation are not effective on this cancer; there are no survivors who have lived past five years. It’s very aggressive, and they do not know how to treat it.

The doctors needed to research and plan the proper treatment path and would get back to me “soon.” I walked out of that meeting and instantly hit Google. Surely, there was more information. I knew I could go to the internet and find all the information I needed to WebMD me a new diagnosis, yet there was no research. All of the cases were in third world countries during the early 1980s. There was no support group, no known treatment plan, no history of success when treating this cancer. It always returned, metastasized, and took the patient’s life. I never googled it again.

Finally, after the longest month of my life, I got the call I had been expecting from the hospital. “We need to remove your entire right mandible,” they said. The surgical plan was extensive. I was going in for a 20-hour surgery to have my right mandible removed from my ear to my front chin. They would remove bone and tissue from a donor site to replace what they removed from my face. So I needed to choose between fibula or scapula.

My son had just turned one and was learning to walk. We live in a two-story home, so I selected my left scapula. If I was going to lose my ability to speak, eat, talk, etc. I wanted to be able to at least walk.

Once I received my treatment plan (well over $600,000), I panicked. I didn’t know what to do. How we were going to fund all of this? I created a GoFundMe page in hopes of raising funds. The most amazing thing happened to me. Within 24 hours of my story being shared on social media, I had an inbox messaged asking if someone could share my personal contact info with a friend who could help me. I was desperate and agreed.

That night, I was on the phone with Linda Miles, co-founder of the Oral Cancer Cause, Inc. (OCC). In this one conversation, not only did she help me find hope, she also connected me to the only other person alive with this type of cancer. The OCC helped him the year before. So now, I had a support team and another survivor of this type of cancer. Then out of the blue, two weeks later a wonderful card showed up with a check inside and a note saying to “Please put your son in daycare while you are going through recovery.” I was floored. Not only did they give me hope, they sent me a check to assist me in a time of despair.

The following month passed in a blur. I planned, prepared, organized, and did everything I could to ensure my family would be cared for during my lengthy hospital stay. I distinctly remember having doubts and second guessing the doctor’s plans. I considered my options and, after a very heartfelt conversation with a close friend, I realized I would be planning my funeral if I did not have this surgery. So at 35, I met with a notary in a parking lot and signed my last will and testament. I put my trust in my doctor’s plan and ability and never looked back. I had a 20-hour surgery, extensive reconstructive surgery, 51 staples in my shoulder, and a three-year $90,000 dental repair plan to look forward to.

Cancer changes your life forever. But very few people will tell you that cancer changed their life for the better. I am living my “new normal” and now work for the Oral Cancer Cause, Inc. a 501c3 non-profit organization that offers financial assistance to oral cancer survivors across the country. OCC works diligently to increase patient awareness and early detection of this horrid disease. Our main campaign is the Bubble Gum Challenge, which shows support for oral cancer survivors by “blowing bubbles for those who can’t” because most oral cancer survivors will lose pieces of their tongue, palette, or teeth and can no longer do something as simple as chew a piece of gum, let alone blow a bubble.

I would not be here today to write this article or be a crusader against oral cancer had it not been for the thorough and wonderful dental team and dentist who took the time to offer an oral cancer screening, educate the patient on what is in their best interest (and why), and followed up with me.

Be diligent, be passionate, be informative, and be pro-active. Because you may just save a life today.

The author also shares her story on her website, A Young Survivor.

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