The Edmond Sun
Like many people, the “power of denial” after finding a lump where it shouldn’t be can take over a person’s life if only momentarily.
For Cheryl Hille, a social worker at a local hospital, denial of her circumstances, choices and outcomes was the safe position when she discovered a lump on her neck not once, but twice.
A single mother of three daughters who are now grown with two grandchildren, Hille’s life pretty much consisted of working, enjoying her hobbies and spending time with her family and friends.
In 1995 when she was diagnosed with a carotid body tumor on the right side of her neck, she was told it was a benign tumor on the carotid artery; one of the arteries which provides the main blood supply to the brain.
“It is non-malignant in the sense that it’s not cancer,” Hille said, “but ‘malignant’ in the sense that if it is left untreated, it will continue to grow and damage surrounding structures, including nerves and other blood vessels. And we’re talking about the main pipeline to the brain… not something to mess with.
“I discovered it by accident while watching my daughter’s soccer game and rested on my head on my hand and felt a lump. When it comes to issues about my health, my fears get the best of me and I tend to live in the ‘world of denial.’ Instead of seeing a physician, I just hoped it would go away. But it didn’t and finally my nurse friends convinced (or truth be said) forced me to seek medical attention.”
After hearing all of the risks involved in surgically removing the tumor, Hille realized she had no other option. The surgery was uneventful and she went on with her life.
“About a year and a half ago in July 2011, I again rested my head on my hand and felt a lump in my neck,” Hille said. “A carotid body tumor is rare in the first place and even rarer for it to come back. So I guess I don’t learn my lessons, because instead of going to the doctor, I just hoped it was an enlarged lymph node and would go away. The thought of it being another carotid body tumor and having to face all of those scary surgical risks again or the fear of it being cancer were overwhelming.”
Hille said the lump was still there week after week, and denial wasn’t really working for her. After suffering for about a month of anguish she finally got up the nerve to see a doctor.
Hille describes the period of time from finding a growth a second time as like being on a roller coaster from hoping to hear it was just a lymph node to fearing the worst again.
“At first I was told it was a recurrent carotid body tumor and I would need radiation treatment. Surgery was not recommended because the wall of the carotid artery was too thin from the first surgery and the risks of death or stroke were even greater. But then I was told that it may be a malignant lymph node and I needed to have a biopsy. But then I was told a biopsy was too risky. That experience was awful. I had finally been relieved knowing that I didn’t have cancer, only to be thrown back into all those anxieties about the possibility of it being cancer after all. After weeks of emotional turmoil, it was finally confirmed to be a recurrence of the carotid body tumor.
One set of doctors strongly recommended Intensity Modulated Radiation Therapy, but other specialist strongly encouraged her to try proton therapy.
“I opted for the proton therapy. It just made more sense to me to go with the treatment that had fewer side effects and damaged less of the normal tissue and structures in my neck,” she said.
Hille became a patient at ProCure Proton Therapy Center in Oklahoma City for five weeks of treatment. The treatments lasted 45 minutes to an hour.
“I went every day after work. No treatments on weekends. There were virtually no side effects and I was able to carry on with my daily life as usual,” Hille said. “My friends and family were all worried that I was getting way too much radiation to the brain because I was always saying how much I looked forward to my proton treatments and was glad that I was being treated there. When the treatment was completed I was glad to have it over with on the one hand, but sad to leave my treatment team.”
Hille said she has been fortunate to have been healthy all of her life, but the period of limbo while doctors were trying to confirm a diagnosis was paralyzing.
“As much as I tried not to, I kept fearing the worst-case scenarios and thinking I should start writing my own obituary. I am sure my imagination was my worst enemy. I couldn’t stop thinking about all of the things in life that I would miss out on if I was given a terminal diagnosis. I had to accept that I was not in control and that was a very scary thought. If you lose your health, you lose a lot.”
Her daughter was getting married in a year, and she was afraid she wouldn’t be here for her wedding.
Hille has CTs every six months for the next five years to make sure the tumor is not growing.
“I have had two and so far, so good. The tumor size remains the same as it was before treatment. However, carotid body tumors are slow growing, so it remains to be seen. But so far, it looks like the treatment did its job.”
Cheryl said her first advice to someone facing a diagnosis would be to consider proton therapy at ProCure Proton Therapy Center in Oklahoma City .
“Surround yourself with positive people and avoid others sharing their horror stories about similar diagnosis and treatments,” Hille said. “We should all every day, whether we have been given any kind of diagnosis or not, appreciate every day for the gift that it is because we never know if there will be a tomorrow. One sentence or word in a pathology report can change your life forever.”