There’s an old saying used in medical school (and also heard on Grey’s Anatomy): “When you hear hoof beats, think horses not zebras”.
And in many cases, it’s true: think straight and look for the obvious diagnosis.
But for Jeanne Yee — suffering from rare, hard-to-diagnose tumours for more than a decade — someone had to look for the zebra.
“If you have a symptom that keeps coming back and never seems to go away, think zebra,” Jeanne said.
It was about 15 years ago that Jeanne, then 37, started to have mysterious symptoms. She lost 30 lbs. She was in constant and agonizing abdominal pain that left her unable to walk or work. She had heart palpitations. A year later, she started vomiting every few days for several hours at a time.
Jeanne had travelled to China in the summer of 2000 – and her doctor figured she had “picked up a bug”. She was on antibiotics for 15 months. Around that time, a gastroenterologist diagnosed irritable bowel syndrome.
“Then the pain disappeared about 18 months after it started,” Jeanne said. “I was able to start eating normally again. I went back to work.”
She still had episodes of pain and vomiting but they were more spread out. It continued for several years.
Over those years, other seemingly unrelated things started happen to Jeanne’s body — patches of eczema, profuse sweating, flushing (when Jeanne’s body would go all red).
From IBS to menopause to food allergies to environmental triggers, no diagnoses fit and no treatment helped. Jeanne kept searching for answers. Finally, in 2014 an internal medicine specialist referred her to Sunnybrook’s Neuroendocrine Clinic. There, a team found the diagnoses she’d been waiting years for: neuroendocrine tumours.
Neuroendocrine tumours (NETs) are abnormal growths in the neuroendocrine cells. They usually grow slowly and can affect any organ. Most often NETs affect the lungs, pancreas or intestine. Symptoms are often related to the hormones the tumour produces and then releases. And, since symptoms are common to many illnesses, NETs are hard to diagnose.
Soon after meeting with Sunnybrook’s NET team, Jeanne had major, life-saving abdominal surgery to remove three primary tumours in her small intestine, and others in her lymph nodes, liver, diaphragm and peritoneum.
“I’m so grateful to be alive right now,” Jeanne said. “I’m grateful to Dr. Julie Hallet, Dr. Calvin Law and their team for seeing me and getting a diagnosis and treatment plan as fast as they could. As soon as I was referred to the clinic everything happened so fast – bang, bang, bang!”
Jeanne, now 52, retired from her physically demanding job as a massage therapist. She receives injections each month to slow the growth of other tumours. She says the NETs team keeps a close eye on her to help reduce her worries for the future.
“I know the cancer will most likely progress and there will be constant changes in my life, but I can trust it to the doctors to look after me now,” Jeanne says. “I also have psychotherapy sessions almost every month that has been helping me deal with firstly, the cancer diagnoses itself, then how do I tell my friends and family and how do I live my life beyond the diagnosis. I’ve had to wrap my head around a lot of things in short order and there’s no way I could have done this on my own.”
Jeanne is still hit with fatigue and other symptoms, but says she is hopeful she will find another calling in life.
“I savour the time with family, friends and neighbours. I still cycle on sunny days, go for long walks and run a little. I pray a little longer, meditate a little longer, breathe deeper, smile more, and laugh a lot.
Jeanne also hopes to raise awareness about this disease.
“To the other ‘zebras’ out there: If you are a ‘zebra’ come and stand with the crowd, don’t go it alone. The more we stand together, the more our voices will be heard.”