Written by Alexis Dobranowski, Communications Advisor at Sunnybrook
There's an old saying used in medical school (and also heard on Grey's Anatomy): "When you hear hoofbeats, 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 says.
It was about 15 years ago that Jeanne, then 37, started to have mysterious symptoms. She lost 30 pounds. 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.
No diagnoses fit and no treatment helped.
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 says. "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.
Jeanne Yee was treated for rare neuroendocrine tumours at Sunnybrook's Neuroendocrine Tumour Clinic.
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 says. "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."
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Situs Inversus is a congential condition in which internal organs of stomach and chest lie in mirror image of their normal body position -- something many sufferers aren't aware of until they seek medical help for an unrelated problem. People with Situs Inversus typically wear some form of identification to help doctors in the case of a medical emergency.
Trigger thumb, or trigger finger as it's sometimes known, causes a person's finger or thumb to get caught in a locked position. According to the Mayo Clinic, it can then stay stuck or straighten with a painful "snap." The cause? It depends. Trigger Thumb is the result of a narrowing of the sheath around the tendon in the problem figure, but that can be caused by a lot of things, including any activity that requires people to grip things frequently. Trigger Thumb is also more frequent in women.
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This condition, which typically occurs after an extremely stressful emotional event, causes a person to experience sudden blindness or paralysis that can't be otherwise explained. People with mental illlnesses are at particularly high risk and psychological treatment can help lessen the symptoms.·
Ochronosis results in black or blue external tissues, often the ear cartilage or eye, though it can occur throughout the body. It affects people who suffer from certain metabolic disorders, but it can also be caused by exposure, though scientists aren't exactly sure to what. Not just a cosmetic issue, the affected areas can become brittle and degenerate over time.
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As the name suggests, Hairy Tongue is a condition in which the tongue develops a black, hairy texture. According to the Mayo Clinic, the disease is "harmless" and is caused by an overgrowth of bacteria in the mouth, which can be treated with antibiotics. The NIH reports that hairy Tongue can also present as brown, yellow, or green discoloration. ·
This obscure, inherited disorder presents at birth and causes infants to grimace when, in fact, they are attempting to smile. The disorder also includes an extreme urinary abnormality: an obstruction that interrupts the connection between nerve signals in the spinal cord and bladder, leading to incontinence. Though treatment does exist in the form of antibiotics and bladder re-education, some patients can develop renal failure in their teens and 20's, which can be life-threatening.
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