Joanne's Article

Katherine Mortimer reporting for
The Morning Star

Raising awareness about rare cancer

Participants walk to raise funds for the Carcinoid/NeuroEndocrine Tumour Society of Canada. By Katherine MOrtimer Morning Star Staff While “seize the day” is often bandied about in popular culture, Joanne Ferguson has made the expression words to live by. Her diagnosis with a rare form of cancer means her future is uncertain, so she’s determined to make the present count.

Diagnosed with carcinoid cancer in 2002, the former registered nurse is taking pleasure in her family, her hobbies and her friends. “I live in the moment and I find happiness and contentment in the moment,” said Ferguson, over a cup of coffee.

Ferguson knew all of the statistics surrounding cancer. She knew that eating right, exercising and not smoking went a long way towards preventing the disease. So when she was diagnosed with carcinoidcancer at the age of 52, it came as a shock, not least because it was one with which she was unfamiliar.

“I had been experiencing terrible pain in my shoulders, in my chest and ribs and they couldn’t figure out what was wrong,” she said. It took the better part of a year to figure out why she was in constant pain. In December 2002, Ferguson had a CAT scan which revealed a tumour on her lung. “I was devastated because you immediately think lung cancer, and I had always been such an anti-smoking advocate, and an advocate for health and fitness.” Surgery to remove half of her lung was next, and Ferguson was told that she was cured.

Three years later, she again began to experience muscle pain, lost weight, had diarrhea. Tests were inconclusive. Last year, she decided to get more aggressive with her treatment and flew to Sweden for a PET scan, as the country is known for its specialists in lung carcinoids. “I’m lucky in that I was always supported by my GP, but because it’s a rare disease, many physicians don’t know anything about it. It’s really on us patients, you always have to be your own advocate. “There are limited options for this type of cancer, which is slow-growing. As my doctor said, ‘having a rare disease is like a curse’ because you fall through the cracks.” She said while chemo is not generally used for this type of cancer, something called a hormone antagonist (a chemical substance that inhibits the function of hormones on specific sites) can be administered intravenously.

Carcinoid/neuroendocrine tumours are slow-growing cancers that originate in the intestine, lungs, pancreas and occasionally other areas of the body, such as the thyroid, ovaries and testes. These tumours arise in hormone-producing cells and because of this they can produce excessive amounts of hormones, which can produce symptoms of the carcinoid syndrome and related syndromes. Symptoms may include flushing, asthma-like wheezing, diarrhea, arthritis and muscle-wasting. Ferguson said because these cancers and syndromes are rare, they are difficult to diagnose, and people may go for years without a diagnosis.

“Canada is lagging behind Europe with research and treatment options, and many Canadians pay out of their own pocket to seek better diagnosis and treatment in countries such as Sweden, Holland, the U.K., Switzerland and Germany.”

While her cancer is under control at the moment, Ferguson said her life is not what it was. Her kayak now has a motor on it, her shoulders need replacing and her career was cut short.

“Instead of being an athlete, I play bridge, read books and socialize with friends,” she said. “I enjoy my garden and I love being with my grandchildren. I’m always apologizing to my husband because there are so many things I can no longer do. So it’s that loss and sadness when you see other couples doing things together. You have lost what you used to do, so you have to re-set your priorities.”

As well, Ferguson started the Carcinoid Cancer Support Group last year, in the hopes of sharing awareness about the disease. Through the group, she met Al Rich. Like Ferguson, the West Kelowna resident spent years trying to get a diagnosis, and initially presented with symptoms of Cushing’s disease, where the adrenal glands are overproducing. “We all start off on different journeys and a lot of people never discover what they have,” said Rich, who moved to West Kelowna from Winnipeg after retiring from a career in sales. “Initially, everyone thought I was depressed, but I just got sicker and sicker, and I would lay in bed as though I had the flu.” Eventually, the decision was made to remove his adrenals. Doctors still couldn’t discover what was wrong, but they found two spots on each side of his lungs. “In 2005, I had my adrenals out, had a PET scan, discovered a growth on the right-hand side of the lower lung lobe, and also discovered some in the lymph nodes.”

In September 2007, doctors found a mass on the right-hand middle lobe of his lung and was given two years to live. Waiting for the results of his regular check-ups are emotionally draining “I live every day with the fact, ‘am I going to be here?’ I’m still trying to adjust to this, and I’m trying to be a little looser in my life — I live in denial that I’m sick.”

Rich wants to make sure no one else has to go through the uncertainty that accompanies this disease. “If you’re experiencing some weird stuff and having trouble with your doctor, get in touch with us,” he said. “Every referral I had I was told I was depressed. I saw over 30 doctors, I had points where I was almost suicidal. “The only way is to make people aware. I’m here today because my wife, Bev, is a nurse and is very proactive. When you’re not OK, you need someone to push for you. You always have to have hope, I have a will to live, although I don’t have anything spiritual. This has been such a long journey for me.”

Ferguson said one of the difficulties with this disease is that the tumours are small and as they metastasize, they grow quickly. She takes a naturopathic approach to her health, made changes to her diet, does massage therapy. “I have my nights where I wake up and I worry about what my future holds. But I am a spiritual person, and I do have faith,” she said. “I go there and ask for strength. I like getting together with friends, looking at the lighter side of life, watching comedies because laughter is the best medicine, as long as you can continue to laugh and love, as long as you have that.”

Ferguson said not looking sick can actually be a problem in that friends will assume you’re well enough to take part in activities. “We haven’t had chemo, we haven’t lost our hair. We really need to promote awareness to doctors and patients.”

One way of doing that is through a recent fundraiser, Joanne’s Walk, that took place in Kal Park. Ferguson was thrilled that 41 people came out to walk, 91 people made donations and a total of $3,600 was raised. Money will be going directly to a research fund with the Carcinoid NeuroEndocrine Tumour Society of Canada. The society’s mascot is a zebra because medical students are taught, when hearing hoof beats, to think horses. NeuroEndocrine tumours are rare and are considered zebras: in other words, something may not be as it seems.

For more information, call Ferguson at 250-545-3967, jjttferguson@shaw.ca or Rich at 250-768-0095, abrich@shaw.ca. or see www.cnetscanada.org.

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