TORONTO -- When Miguel Roger began chemotherapy for chronic lymphocytic leukemia last summer, he didn't realize the challenges he would face with food.
"Once treatment started, I noticed a change in my appetite, and a lack of energy," said the 65-year-old retired engineer.
His wife Jenny, 61, became his primary caregiver, and found it challenging navigating all the nutrition advice from books, their doctor, and the hospital nutrition centre.
"I once cooked him calf liver to help with his anemia," she said, "I read it in a book, but when I spoke to Miguel's doctor, we were told it wouldn't help, since the anemia was not related to nutrition, but to the cancer itself and the chemotherapy."
Nutrition is an under-recognized challenge for many cancer patients. And fad diets can cause unnecessary weight loss, disrupt treatment, and sometimes make outcomes worse.
Many patients struggle with navigating the "cancer-specific" dietary information found in popular books, blogs, and websites. A British study released last month found caregivers and patients were concerned about the lack of accurate and clear information -- something Canadian health providers are keen to provide.
It's easy for misconceptions to spread through websites, nutrition bloggers, books, and word-of-mouth.
"In clinic, I once overheard a woman saying how she was getting mega-doses of vitamin C, rose hip tea, bee pollen and antioxidants," said Jenny Roger. "But I heard the dietitian advise that those things may not be regulated and could be contraindicated during chemotherapy."
This is a familiar story to many cancer specialists and dietitians, including Thomas Jagoe, director of the McGill Cancer Nutrition Rehabilitation Program in Montreal.
One of his challenges is dealing with diet trends that conflict with what a patient's oncologist advises. One trend is "short-term fasting" before chemotherapy.
"This is a hot topic of research but at this time the evidence doesn't support that a patient who is already losing weight starve themselves for a few days," Jagoe said.
In Halifax, it was an open line of communication that helped Stacey Sheppard, a dietitian with the Nova Scotia Health Authority, identify the real reason behind a patient's issue.
"One patient with nasal cancer got advice from a holistic nutritionist to omit gluten. When we got to the bottom of the issue we realized that they actually had issues with swallowing crackers -- so it was a swallowing issue, not a gluten issue," she said.
But patients keep looking for answers outside the system. And it's all about control, says Jonathan di Tomasso, a nutritionist who works with the cancer rehabilitation program at McGill.
"People often lose control over many aspects of their life when they are diagnosed with cancer. Food is something they can control, but the roar of misinformation out there is deafening," he said.
Toronto-based naturopath Daniel Lander, who has an undergraduate degree in nutritional science, works closely with physicians to offer evidence-based nutrition advice.
"Patients are generally relieved when I tell them they don't have to follow those strict diets, and I focus on making sure they are getting enough calories and important macronutrients," Lander said.
He advises a Mediterranean-style plant-based approach that has lean-protein sources, lower animal products and lots of fruits and vegetables and whole grains.
"It's nothing too exciting or flashy but from the science, that's the best we can tell people to do," he said.
In terms of good online sources of information, Daniela Fierini, a registered dietitian at the Princess Margaret Hospital, recommends the American Institute for Cancer Research, BC Cancer Agency and Nourish Online, but still cautions against the "one size fits all" model.
Due to a good response to chemotherapy and radiation, Roger's cancer has been in remission for the last month.
"Now my appetite's normal. I lost around 10 pounds at the start of the treatment but I think I have gained it all back ... my energy level is fine and I'm no longer swollen," he said.
The Rogers were cautious about following popular cancer diet trends and maintained open communication with their doctor.
"You can get caught up with reading things on the Internet and I think everyone should be working with their doctor. People need to have a bond of trust with their doctor. Some people don't, and so they look elsewhere, which can sometimes be overwhelming and can cause more harm than it helps," said Jenny Roger.
Amitha Kalaichandran is a pediatrics resident and Shuang Esther Shan is a culture and food writer. Both are fellows in global journalism with the Munk School of Global Affairs at the University of Toronto.
