Kathy’s Story: Living with Adenoid Cystic Carcinoma

A Misdiagnosis That Changed Everything

For months, I had constant coughs and colds. My doctor diagnosed me with asthma, and I accepted it without question. I used inhalers, but they never helped.

A few years later, I developed a sharp pain in my side that spread up to my shoulder blade. Breathing became agony. My doctor said it was pleurisy and prescribed antibiotics. I carried on working, thinking rest would make things better — but it didn’t.

A Pain That Couldn’t Be Ignored

Within a week, the pain became unbearable. I could hardly breathe. My GP told me to go to A&E. The 16-mile car journey was agony. Every bump felt like torture.

At the hospital, staff feared I was having a heart attack. My temperature was 104 degrees. After tests and a chest X-ray, they diagnosed pneumonia. I started treatment and slowly began to recover.

The Call That Changed My Life

Not long after, I saw a consultant for a follow-up X-ray. He reassured me that everything would be fine.

Days later, while out for lunch with friends, I got his call: “It’s not good news.” My heart sank. I left the hotel and walked in the rain, feeling numb with worry.

At my next appointment, the consultant said there was something unusual on the X-ray. He thought it was probably scar tissue but wanted a scan to be sure.

A Rare Diagnosis: Adenoid Cystic Carcinoma

The scan led to a bronchoscopy, then a biopsy. The results confirmed I had adenoid cystic carcinoma, a rare form of lung cancer that had likely been growing for around four years. Thankfully, it was slow-growing.

Hearing those words was devastating. I thought, “I’m going to die — and my girls will be alone.” I had never smoked and believed I lived a healthy life. It felt so unfair.

Telling my daughters was one of the hardest things I’ve ever done.

Facing Surgery and Recovery

Two weeks later, I was admitted to hospital for surgery. Thanks to my job’s health insurance, I was treated in a private hospital surrounded by beautiful countryside and caring staff.

On August Bank Holiday Monday 2007, I had surgery to remove my lung. I was terrified I wouldn’t wake up. Five hours later, I opened my eyes in intensive care — alive and filled with relief.

Recovery was slow and painful. Even simple tasks like showering or getting dressed were a struggle. My eldest daughter gave up her job to care for me. My youngest stayed at university, with my encouragement to keep going.

Finding Strength Through Treatment

At my follow-up appointment, my surgeon told me that not all cancer cells had been removed. I needed five weeks of intensive radiotherapy — 25 sessions in total.

The treatment was tough. Eating and drinking became difficult, and I felt weak. But I finished radiotherapy on 9th December and finally returned home to recover. Surrounded by my daughters, family, and friends, I began to heal.

Life After Adenoid Cystic Carcinoma

Three years later, I feel strong again. I walk regularly — even completing a 12-mile walk recently. I love to dance and am now looking for a salsa class for the winter.

I’m so grateful to be alive. Living with one lung isn’t always easy, but as the saying goes:
“That which does not kill you only makes you stronger.”