For months before my paraganglioma1 was diagnosed, I was experiencing shortness of breath, a dry cough, fatigue, fever and heart palpitations.

Visits to a variety of hospitals resulted in a misdiagnosis of histoplasmosis, an infection caused by breathing in spores of a fungus.

Eventually, the tumor was discovered, and I was referred to Cleveland Clinic for treatment. Dr. Raymond2 nicknamed me “The Unicorn” due to the rare nature of my tumor. It was a tennis ball-sized mass wedged between my heart and lungs, and wrapped around my aorta. Because of how it was positioned, my medical team wasn’t sure if it was malignant or benign. Dr. Raymond consulted with Dr. Videtic3 to determine how best to attack the tumor.

I was afraid, but I had too much to live for. I figured whatever this fight was going to be, let’s do it. It ended up being five weeks of radiation therapy first, a total of 25 treatments in all. To ensure the radiation would be effective in reducing the size of the tumor without damaging the tissue of nearby organs, Dr. Videtic created a 3D model to target the therapy as accurately as possible. 

After the radiation treatment, Dr. Raymond and Dr. Tong performed a complex open-heart surgery to divide my ascending aorta and remove the tumor resting between the aorta, main pulmonary artery and heart.

I never gave up. Neither did Cleveland Clinic.

 

Former television news anchor Brigitte Coles is now an author, a community engagement specialist and a motivational speaker.

Three women, walking on a paved path talking about smiling.

Throughout her patient journey, Brigitte Coles (center) had her mother, Mary Hornung (left), and her aunt, Virginia Thornton (right), by her side. | Photo: Marty Carrick

Notes

  1. An abnormal growth of nerve cells.
  2. Daniel Raymond, MD, is a thoracic surgeon.
  3. Gregory Videtic, MD, is a radiation oncologist.
  4. Michael Tong, MD, is a cardiac surgeon.

A rare tumor brought Brigitte Coles to Cleveland Clinic.