WATCH ABOVE: Toronto Mayor Rob Ford has been diagnosed with a very rare form of cancer called malignant liposarcoma. Carey Marsden speaks to liposarcoma patients about the cancer and its treatment.
TORONTO – She lost her hair, had bouts of nausea, sleepless nights and jittery days. Teresa Bell went through chemotherapy and survived liposarcoma three times within the past decade, and now that the cancer’s resurfaced, she’s fighting it again.
The Ontario mom of three has the same rare cancer Toronto Mayor Rob Ford was diagnosed with. Receiving the news was scary, but learning that it was such a rare cancer made Bell doubly concerned.
“You don’t know what it is. You feel very alone in your diagnosis because it’s rare,” Bell told Global News.
At a press conference Wednesday night, Mount Sinai doctors announced that Ford has liposarcoma and will be starting his first round of chemotherapy within days. He will undergo three days of treatment, followed by 17 days of rest before the cycle begins again.
Doctors will determine their next steps pending Ford’s response to the treatment. There could be more cycles of chemotherapy, radiation could be involved and surgery is also an option.
WATCH: Dr. Samir Gupta talks with Leslie Roberts about liposarcoma
How other families dealt with rare cancer diagnoses
Liposarcoma is a rare type of cancer that begins in the fat cells. It’s in the soft tissues and could start in any part of the body – the tendons, nerves, blood vessels and muscles.
Sarcomas, in general, are rare and comprise only about one per cent of all cancers. That’s why Bruce Shriver began a global initiative called the Liddy Shriver Sarcoma Initiative after his daughter lost her life, at 37, to Ewing’s sarcoma. Ewing’s is also a rare cancer that’s part of the sarcoma family.
Shriver remembers when Liddy got her results from the doctor in 2002.
“We looked at one another not even knowing the term and immediately jumped on the Internet,” Shriver told Global News.
They stumbled upon a medical article – and even those were sparse at the time – that suggested that adult patients with Ewing’s have about 18 months to live.
“I could tell in her eyes something was happening. You experience fear of this unknown disease nobody can really help you with. Your family doctor doesn’t know anything about it, the oncologist team doesn’t really know anything,” Shriver explained.
Ford was initially admitted to Humber River Regional Hospital while dealing with “unbearable” abdominal pain. He was then transferred to Mount Sinai Hospital – and for good reason – the hospital has a multi-disciplinary team that specializes in the rare disease.
“They’re very rare cancers and few oncologists would ever see a case of this disease. You need to be treated by physicians, surgeons, oncologists and radiologists who have experience with the disease so they know the normal path and behaviour,” Shriver said.
WATCH ABOVE: The Head of Medical Oncology at Princess Margaret Hospital, Dr. Malcolm Moore, discusses the specifics of Mayor Ford’s cancer diagnosis.
But both Shriver and Bell know that Ford is in for a life-changing journey.
Patients shed light on their battle against cancer
In Liddy’s case, she had pain in the bottom of her foot for several years before she was properly diagnosed. MRIs were conducted on her pelvis, ankles and other parts of her body – the cancer was actually behind her knees. By the time the tumour was extracted, it had spread. She had two golf ball-sized tumours in each frontal lobe in the brain.
After giving birth to her third child, Bell asked her doctor why she wasn’t losing her pregnancy weight. Turns out, she had a 25 centimetre mass in her abdomen – it was like still carrying a baby, she described. (Ford’s tumour, also in the abdomen, is about 12 centimetres by 12 centimetres.)
For Liddy, fighting the disease meant chemotherapy. She lost her hair, dealt with nausea and exhaustion, and travelled long distances to sign up for clinical trials and treatments. Shriver remembers having to pull over onto the side of the road so his daughter could vomit.
As a mathematician and computer scientist, she didn’t want to give up working and stayed on as long as she could.
Bell – who spoke to Global while en route to Montreal for her treatment – recalls losing her hair, extreme fatigue and nausea. Medication meant to counteract the side effects caused bloating, jitteriness, and insomnia.
But it isn’t the side effects that bother Bell the most.
“What I dislike is that it gets first choice of everything. Chemotherapy and cancer come first and they always have first pick,” she said. Her sons have spent the last decade – their teenage years – comprehending their mother’s ailment.
Dr. Zane Cohen, who’s leading the mayor’s care team, couldn’t say if Ford’s treatment plan would keep him from his posting as mayor and city councillor candidate.
“I can’t recommend yes or no. He may be able to work through it…he will be able to be functional but he’s going to have rough days,” Cohen said.
On Shriver’s sarcoma network, patients discuss the day-to-day side effects, along with fertility issues, heart-related concerns and other long-term consequences.
Then there are the rare side effects: a weakening of the immune system, risk of infection, low blood count, needing a blood transfusion or if the chemo affects organ function.
These symptoms aren’t across the board, though. Every patient and his or her response to chemotherapy will vary, the experts say.
Resources and support services are available
What’s absolute is that Ford and his family face some trying times ahead, but the resources are there to support them along the way. It’s up to the Ford family to decipher what guidance they need – some patients reach out to their community, while others prefer privacy.
“There’s no question it is lifechanging. It’s rigorous for the entire family and it all depends on his personality, and relationship with his wife and kids. They’re going to be overwhelmed initially but they’ll make adjustments,” Shriver said.
Some families go through a string of emotions: anger, guilt, fear, anxiety and isolation, according to Heather Sinardo, a Canadian Cancer Society spokeswoman.
The national organization has peer support that matches a patient with a survivor who may have gone through a similar experience.
It also has a website that links patients and their families to others so they can swap stories and advice. There’s even a hotline – 1-888-939-3333 – for patients and their family members if they need to reach out, she said.
“Over 190,000 people will be diagnosed with cancer this year and we want all Canadians touched by cancer to know that the society is here with support programs and information that’ll help patients and their loved ones,” she told Global News.
Shriver’s website includes easy-to-read, peer-reviewed research on these rare cancers. After having to search so thoroughly for information about his daughter’s disease, he didn’t want others in the world to go through the same ordeal.
The global initiative taps physicians specializing in the rare cancers to write about the specific sarcoma – it’s then reviewed by a board and then made available online for families, caregivers and other physicians. Doctors around the world have even taken to translating the material into different languages – French, German, Chinese, Japanese, Polish, Portuguese, for example.
It’s even helped in providing 53 $250,000 grants – doled out in collaboration with other organizations – to experts in the field. A Canadian, Dr. Torsten Nielsen of the University of British Columbia and his Dutch and U.S. colleagues, was awarded two grants already.
The website includes a Facebook page that’s connected with over 4,000 patients, regular newsletters and online forums.
Read more about the Liddy Shriver Sarcoma Initiative here.