This is a special report from FOX 16 News Breaking News anchor and investigative reporter Mitch McCoy.

LITTLE ROCK, Ark. – I made a promise seven years ago to provide Arkansans news and information that people use to make critical decisions that could affect their life or their loved ones — which is why I want to share a personal story with you.

It was one year ago, August 17, 2021, my two younger brothers and I were at my father’s side as he made the journey. Pete was 53 years old and battled cancer for the last decade of his life.

A never-ending pain

I was in high school when my dad started to complain of pain in his jaw. Maybe it was a cavity — so he went to the dentist. Even after a recommended root canal, the pain wouldn’t go away. This lasted for more than a year and no one had answers until he felt a lump near his salivary gland.

After a biopsy, doctors at one hospital recommended a basic procedure. A few family members urged him to get a second opinion. Little did he know but that second opinion would change the course of his life forever. Doctors at the University of Michigan Medical School (U of M) diagnosed my dad with Stage 4 Adenoid Cystic Carcinoma (ACC).

You’re probably thinking, “What’s that?” So were we.

ACC is a rare cancer, affecting a few thousand people every year. For comparison, about 330,000 American women are diagnosed with breast cancer annually. It can affect your throat, mouth, or other parts of your body, including your tear or sweat glands.

“[It] typically arises in the salivary glands,” the U of M wrote in 2017. “It’s usually diagnosed at an advanced stage, is very resistant to therapy, and there’s no cure.”

The surgery

My dad’s original recommendation for a basic surgery turned into a major, hours-long operation suggested by the second doctor. He knew the risks of surgery, which involved removing and rebuilding his tongue. It would give him more time but not long enough.

ACC is slow-growing with a five-year survival rate. The U of M told him the surgery would only buy him time and that the cancer would come back in 10 to 20 years. He went ahead with the life-changing surgery in the spring of 2010.

The National Institutes of Health reported the majority of patients who detect early-stage ACC have a ‘favorable prognosis.’ However, there’s a significant chance the cancer will metastasize.

My dad was never able to talk the same. He went to a speech therapist, but his new tongue and jaw usually got the best of him. I think he felt embarrassed about it from time to time. Chewing food and drinking water turned into life’s most difficult tasks.

He never gave up though. His desire to fight gave me a perspective on how brutal cancer is and why it’s so important to raise awareness.

Researching the rare disease

When it comes to ACC, there could be hope in the years to come for patients diagnosed with ACC. Researchers across the world, including at the U of M are working to develop a drug that can kill the cancer cell.

According to the Adenoid Cystic Carcinoma Research Foundation (ACCRF), which launched in 2005, researchers are learning more every day about how the ACC tumor is fueled and how it can be stopped.

“It is possible and fairly common for patients to die with ACC, but not from ACC,”  the group states. “[Our] mission is to permit all patients to rid their bodies of ACC or at least make it into a manageable, chronic disease. The amazing efforts of the patient and research communities are providing reasonable hope that we will get there.”

In 2019, Food and Drug Administration Acting Commissioner Dr. Norman Sharpless said there’s more research now than ever before.

“We still don’t have a cure for ACC, but we know a lot more about its biology, and now there are a number of clinical trials in progress, some showing promising signs. Now I am starting to feel hope for ACC,” said Sharpless.

What to look for

  • A lump on the roof of the mouth, under the tongue or in the bottom of the mouth
  • An abnormal area on the lining of the mouth
  • Numbness of the upper jaw, palate, face, or tongue
  • Difficulty swallowing
  • Hoarseness
  • Dull pain

For more information on adenoid cystic carcinoma, symptoms to watch for or physicians that have treated patients with the cancer, please visit the Adenoid Cystic Carcinoma Research Foundation online at ACCRF.org.