DAY 1: The Enemy Within

When it comes to getting cancer in Hamilton, there are the usual genetic and lifestyle clues. There is also an indisputable link between cancer and wealth

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Photos by JOHN RENNISON and GARY YOKOYAMA, The Hamilton Spectator.

 

TO FIND CANCER RATES IN YOUR NEIGHBOURHOOD, CLICK HERE.

 

By STEVE BUIST

Janice McFadyen arrived at the Dr. Bob Kemp Hospice on Aug. 12, one week before her 45th birthday.

Her daughter, Rachel, would turn 20 on Aug. 24, and a week after that, her 17-year-old son Dylan was starting his first year at Brock University.

While her children were taking their first tentative steps into the adult world, Janice was preparing to die peacefully at the pleasant hospice on Stone Church Road East.

At the beginning of August, she had been told she had five weeks to live.

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Cancer patient Janice McFadyen needs inhalers to help her breathe because of the tumours that have now invaded her lungs.

The breast cancer that had been diagnosed 10 years earlier — and beaten once — had returned and now riddled her bones, her lungs and her liver.

There were no more treatments to try and nothing left to do but wait.

“I’m inoperable right now and that’s not cool,” Janice said slowly from her hospice bed, eyelids heavy as she struggled to stay awake from the painkillers keeping her comfortable.

The room is filled with the constant whirring and clacking of the oxygen machine tucked away discreetly in the washroom next to her bed.

“I started planning my funeral about three years ago,” she said. “I just knew.”

Forty-five years old, planning your own funeral and waiting for death to arrive.

It shouldn’t be like that, you think. There’s something wrong with this picture.

Genetics played an enormous role in why Janice got cancer in the first place.

The bigger and tougher question: why is she dying of cancer?

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A groundbreaking new Spectator investigation suggests social and economic factors play a significant role when it comes to cancer death rates across Hamilton.

An examination of 10 years’ worth of cancer data shows that Hamilton has a terrible cancer problem.

It’s not a problem related to the quality of care provided, or the availability of resources, and certainly not a question of the dedication of the many specialists at Hamilton’s Juravinski Cancer Centre or around the city who treat the disease.

It’s a familiar conflict first brought to light in 2010 by The Spectator’s landmark Code Red series, which analyzed the health of the city down to the level of neighbourhoods and showed that wealth and health are strongly connected.

Hamilton’s cancer problem breaks down along class lines. It’s a conflict of social and economic inequalities and the staggering contrasts in health that exist between those who are poor and those who are not.

The Spectator’s stunning new investigation shows people living in the poorer parts of Hamilton are dying of cancer at significantly higher rates than people living in the richer parts of the city.

The overall death rate from all types of cancers combined in Hamilton’s inner-city core was almost 90 per cent higher than the cancer death rate in Ancaster, Hamilton’s wealthiest suburb.

The data, provided exclusively to The Spectator by Cancer Care Ontario, covers the years 2000 to 2009.

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In Hamilton’s inner-city core between Queen Street and Parkdale Avenue from Main Street to the waterfront, the overall cancer mortality rate was nearly 73 deaths for every 1,000 people aged 45 and older over that 10-year period.

In Ancaster, the rate was almost 39 deaths per 1,000 people aged 45 and older.

Whether it’s all cancers combined, whether it’s just men or just women, or whether it’s the four most common types of cancer — lung, breast, prostate and colorectal — on their own, the picture is always the same: the death rates are higher each time in the poorer former City of Hamilton than they are in the five richer suburbs of Stoney Creek, Ancaster, Dundas, Flamborough and Glanbrook averaged together.

Over the next week, this unprecedented investigation of cancer at the neighbourhood level will look at the stark inequalities that exist in Hamilton between those who get cancer, those who die from it and why those inequalities exist.

Some of the reasons touch on health issues, such as cancer screening rates and access to basic medical care. Some of the reasons touch on social and economic issues.

Sometimes, as the original Code Red project showed, those health, social and economic issues are so tightly interwoven that it’s impossible to tug them apart.

You’ll read stories of a dying woman, a man who has spent 10 years on cancer’s death row and others who have fought cancer and won. You’ll also read about people who treat the disease in Hamilton and recognize the health disparities that exist in the city.

In some cases, the differences in cancer death rates between the richer suburbs and the poorer lower city are massive.

More than 12,200 people died of cancer in the amalgamated City of Hamilton between 2000 and 2009, and nearly three-quarters of those deaths were people who lived in the former City of Hamilton, a significantly disproportionate number based on its share of the population.

The glaring social and economic disparities between the poorest and wealthiest parts of Hamilton contributed to thousands of deaths from cancer in the city. What’s worse is that many of those deaths were preventable.

If the former City of Hamilton had the same cancer mortality rate as Ancaster, for example, there would have been 3,438 fewer deaths between 2000 and 2009 in the former city.

That’s almost one a day.

It’s a number equal to all of the people living in the chunk of Hamilton between Sherman Avenue and Gage Avenue from Main Street to the escarpment.

It’s enough dead people to fill 15 per cent of all the burial plots at the Hamilton Cemetery on York Boulevard.

The differences in mortality at a neighbourhood level are even more jaw-dropping.

The overall cancer death rate in the worst neighbourhood — an inner-city piece of Hamilton between James and Wellington streets from King to Cannon streets — was more than four times higher than it was in the neighbourhood with the lowest death rate — the part of Ancaster between Garner Road, Fiddler’s Green Road and Wilson Street.

The median family income for that Ancaster neighbourhood was just under $100,000, according to the 2006 census.

In the inner-city neighbourhood, it was $31,500 — well below the poverty line for a typical family of four.

When it comes to lung cancer, the differences between the inner city and the suburbs are astounding, driven primarily because poorer people smoke at much higher rates than richer people. The death rate from lung cancer in east Hamilton between Parkdale Avenue and the Stoney Creek border is nearly four times higher than it is in Ancaster.DAY4-LungMortality

In the neighbourhood along the Hamilton waterfront between Sherman Avenue and Wellington Street, the lung cancer rate was nearly 15 times higher than it was in one Ancaster neighbourhood just east of Sulphur Springs Road.

Look at any number of social and economic markers and it’s clear those two neighbourhoods bear no resemblance to each other even though they’re part of the same municipality.

In that Hamilton waterfront neighbourhood, 36 per cent of the people live in poverty, nearly four in 10 adults don’t have a high school diploma, the median family income is a touch under $40,000 and a quarter of all income comes from government payments.

In the Ancaster neighbourhood, less than 4 per cent of the people live in poverty, just 2 per cent of adults don’t have a high school diploma and the median family income is over $112,000.

The Spectator’s findings were a sobering reality check for those people in the city who specialize in cancer as well as those who try to address issues of inequality across the city.

“There is a significant social justice component to this data,” said Terry Cooke, president and CEO of the Hamilton Community Foundation, which has become a leading advocate for finding ways to reduce the economic disparities that exist across neighbourhoods in Hamilton.

“It suggests that the presumption we have about equality of access we have in our health care system is demonstrably not true when it applies to people of low incomes and people who live in concentrated poverty,” said Cooke.

“It compels us as Canadians to think about how do we respond to the social determinants of health, the things that happen outside of a hospital.”

Carol Rand, director of systemic treatment and regional cancer programs at the Juravinski Cancer Centre, called the disparities across the city “unacceptable.”

“We want everyone to have equal access to our services,” said Rand. The goal of the Juravinski centre, she added, is to provide a co-ordinated system of cancer care that improves accessibility for patients.

“That’s why we want to learn who are the people we’re serving. How well are we serving them? Who’s left out? How do we find out how to go into those neighbourhoods and help people access the services and connect them to health care?”

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Dr. Bill Evans, recently retired as head of the Juravinski Cancer Centre, says people in the cancer field need to guard against a creeping passiveness.

Dr. Bill Evans, who retired recently as head of the Juravinski centre, said cancer care in Ontario has to fight against a creeping passiveness. “There’s passiveness of two types here. Often, the people who are in a lower socioeconomic group have a ‘fate determines what happens to you in life’ outlook so that’s their passiveness.

“We as health care providers have got rather passive, too.

“We have more than enough work,” he said. “People are beating a path to our door, so we sit in our offices and sit in our institutions and wait for people to show up.

“The reality is if we want to be helpful to these folks, we have to carry our messages and our interventions into those communities.”

Dr. Ralph Meyer, the new president of the Juravinski Cancer Centre, said the connection between social factors and cancer is an important issue and a difficult problem to solve.

“The difference in health outcomes by socioeconomic status is recognized, it’s happening in our community and it is important to address at a societal level,” said Meyer.

“It involves health care delivery but it involves many other components of society as well.”

Bill McArthur grew up in the heart of the city on Sherman Avenue, went to Prince of Wales school by Ivor Wynne Stadium as a boy and now lives on Arthur Street North near King Street. In May 2012, the 71-year-old was diagnosed with stage IV non-small cell lung cancer.

“I’m paying the price for 45 years of smoking,” said McArthur.

“I’ve got no one to blame but myself. I could have quit 30 years ago.”

About 3,600 people in amalgamated Hamilton were diagnosed with lung cancer between 2000 and 2009 and,amazingly, nearly half of those people, like McArthur, lived in the lower part of the former City of Hamilton.

The outlook for McArthur is quite dismal, frankly. His tumour is inoperable although he was still being prescribed chemotherapy treatment.

Lung cancer success stories are hard to come by.

Nearly half of all lung cancers in Canada are diagnosed at stage IV because there is no effective way of screening for lung tumours. By the time symptoms show up, it’s often too late for effective treatment.

A recent international study showed that just one in six patients with stage IV non-small cell lung cancer survived longer than one year and just one in 100 survived to five years.

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Bill, McArthur, 71, has inoperable stage IV lung cancer.

At least McArthur has made it past the first hurdle.

“I try not to think about it, I try to have a good attitude toward it, laugh about it,” McArthur said. “What else are you going to do?

“You can’t walk around thinking you’re going to drop dead at any minute, you know.

“Does it make me think about dying? No,” he said. “I don’t even think about dying. I’m too stubborn.”

It was that stubborn streak that nearly killed McArthur.

He developed pneumonia a year and a half ago but refused at first to go to the hospital.

“Then I started spitting blood up and I thought ‘Oh oh, I know somebody else who spit up blood and they had cancer,’” McArthur explained. “I tried to ignore it but it got worse and worse.”

One morning, he was out for coffee with his landlady and after they finished, “I said ‘I think it’s about time you take me to the hospital,’” he recalled.

The doctor ran tests and that’s when McArthur learned he had cancer.

“It scared the hell out of me,” he said. “It almost brought tears to my eyes, but I kept control of myself.

“You can cry all you want but it ain’t going to take it away.”

McArthur started smoking when he was a teenager “to be cool,” and worked his way up to a pack a day.

He remembers the first time his father caught him smoking. His dad was more concerned that McArthur was using his own money to buy his smokes than the harmful health effects.

“I wish I had all the money back,” McArthur said.

He did quit smoking almost five years ago. “I thought I was in the clear and then lo and behold, I’ve got cancer,” McArthur said.

“You don’t realize how bad cancer is,” he added. “It’s an epidemic.

“I walked in the Juravinski for my chemo and saw all the people — that’s another thing that almost brought tears to my eyes. I couldn’t believe how many people got cancer.”

He says cancer has changed his life in a short time. Before he got sick, he’d walk uptown regularly, sometimes twice a day to go for coffee or visit record shops, his passion.

He likes stuff from the ’70s mostly. Jimi Hendrix, he says, is his favourite guitar player.

“I don’t know, I just don’t want to die and have to leave my music behind,” McArthur said. “So I’m not ready to go.

“I don’t care what the cancer’s got on its mind, I know what I’ve got on my mind.”

Hamilton’s cancer problem extends beyond the shocking disparities in mortality rates across the city. There’s also the problem of who is getting cancer in the first place.

The Spectator’s analysis of cancer data also shows there are significant differences within Hamilton when it comes to the incidence of cancer.

Between 2000 and 2009, the overall incidence of cancer was 14 per cent higher in the lower part of the former City of Hamilton versus the five suburbs averaged together. The overall mortality rate, by comparison, was 44 per cent higher in lower Hamilton than the suburbs.

For colorectal cancer, the incidence rate was 18 per cent higher in the lower city than the suburbs while the death rate was 26 per cent higher.

And when it comes to lung cancer, the incidence rate in the lower city was 80 per cent higher than the suburbs while the death rate was 84 per cent higher.DAY1-AllIncidence

There’s a clear pattern in the numbers.

In every case — men, women, breast cancer, lung cancer, prostate cancer, colorectal cancer — the rates of people dying from cancer are worse than the rates of people getting cancer when the former City of Hamilton is compared to the suburbs. This is particularly so when it’s the lower city versus the suburbs.

The discrepancies in cancer rates between the lower part of the former City of Hamilton, which suffers from persistently high pockets of poverty, and the city’s five richer suburbs are strikingly evident when Hamilton is compared to Canada as a whole.

The rate of cancer deaths in Hamilton’s inner-city core was 40 per cent higher than the Canadian death rate. Compare that to Hamilton’s suburbs, where the cancer death rate was about 8 per cent less than the Canadian rate.

The story for men is even more lopsided. In Hamilton’s inner-city core, the cancer death rate was 44 per cent higher for men than the Canadian rate but it was nearly 10 per cent lower in the suburbs than the Canadian rate.

With colorectal cancer, the death rate is nearly 21 per cent higher in the lower city than the rest of Canada while the breast cancer death rate in the lower city is about 15 per cent higher than the comparable Canadian rate.

But once again, it’s the huge variation in lung cancer rates that’s most frightening, pointing to the heavy burden on health caused by high rates of smoking in the city’s poorer neighbourhoods. The issue of smoking in Hamilton will be explored in detail next Saturday in the concluding segment.

The lung cancer death rate was 68 per cent higher in the inner city than the rest of Canada, yet 22 per cent lower in the suburbs than the Canadian rate.

“When you look at data like this, the first question that comes to mind is equity,” said Dr. Peter Ellis, a lung cancer specialist at the Juravinski centre. “Is there equity in access to health care? There’s no reason to believe there’s not equal access to care.

“Is there equal desire for care? Are there other explanations that could contribute to the geographic differences?

“How do you concentrate, for instance, smoking cessation programs and get them to the people who most need them?” Ellis asked. “I think you always have to understand your population of interest.”

It’s Aug. 19, Janice McFadyen’s 45th birthday.

So many friends and family have shown up to celebrate that the party has tumbled out into the lounge at the hospice.

There are flowers, balloons and a birthday cake. Janice is showing off a couple of bracelets she was given.

“I made it to another one,” she said with a grin.

It was almost exactly a year earlier she’d been told that her breast cancer had not only returned but had started spreading through her body.

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Janice McFadyen was thrilled she survived to celebrate her daughter Rachel’s 20th birthday. They held Rachel’s party at the hospice.

Daughter Rachel was with her when she got the news.

“I knew there was nothing they could do at that point,” Rachel said.

“As soon as I heard how many cancers there were and how severe it was, I knew it wasn’t like the breast cancer before.

“It’s pretty final, but I don’t think about the time left,” she added. “I think about the time we can be doing things and keeping her mind in a positive state, so that’s pretty much all I do.”

The first time her mother was diagnosed with cancer, Rachel was in Grade 5 and too young to really comprehend what it meant.

“It was kind of like, ‘Oh mom’s sick, she’ll get better,’” Rachel said. “It didn’t really hit me back then.

“I didn’t really have a clue, actually. Cancer was just a word.”

Janice was just 35 when she was first told she had breast cancer. She cried.

She would discover later that she was a carrier of one of the breast cancer genetic mutations that astronomically increases a woman’s risk of developing cancer. In those cases, when it does strike, it tends to be earlier in life and more aggressive.

Women with the so-called BRCA1 mutation have up to a 65 per cent chance of developing breast cancer by age 70.
Rachel was right, however — her mom did get better for a while.

The cancer went into remission for several years. “But I always had a feeling it would come back,” Janice said.

Genetics aside, when it comes to the risk factors raised by The Spectator’s cancer investigation, Janice ticks off a lot of the boxes.

She lived in Hamilton’s inner core, she’s a smoker and she scraped by on a low income, which in recent years consisted of disability payments. In addition to her long fight with cancer, Janice also has epilepsy.

She grew up in Binbrook, then Burlington, then Brampton before settling down in an apartment on Jackson Street West near Hess Village.

As the cancer spread throughout her body this summer, staying at the apartment was no longer possible.

Besides, Rachel said, it was becoming dangerous. Janice is a smoker and her heavy-duty painkillers made her sleepy.

The family feared the combination of Janice’s grogginess, a lit cigarette and her oxygen tank would lead to an explosion.

With the help of her doctor, Janice landed one of the 10 beds at the Dr. Bob Kemp hospice.

“I’m so grateful for this place,” she said.

One of the dozen or so birthday well-wishers to show up is Al Shaw, Janice’s 42-year-old brother who lives in Gravenhurst. The smile he’s wearing on this afternoon is betrayed by the sadness in his eyes.

“It’s been difficult watching her deteriorate,” Shaw said. “It’s a very helpless feeling. It’s something where all the money in the world can’t help.

“I certainly never expected to be saying goodbye to my sister in our 40s.”

When Shaw was told his sister had five weeks left, he started the clock on his iPhone “and it’s still running now,” he said.

“I looked at it this morning, and I think it was at about 450 hours,” he said. “I like that it’s counting in hours and not weeks or days.

“But it is down to literally the final days,” he added. “Every time the phone rings, I really think it could be the one.”

Does he think there could still be a miracle left for his sister? Does he even allow himself to think that way?

“I think the miracle has probably happened for her,” he said quietly.

“I think the fact that she beat the initial bout of breast cancer with chemotherapy and surgery, that was the miracle — that she gained another eight years or so.”

Back in her room, Janice exchanges her portable oxygen tank for the permanent air tubes that stretch out from the machine in the washroom beside her bed.

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Janice McFadyen’s trademark pink Crocs.

She slips off her pink Crocs and settles back into her pillows.

For someone who recognizes the end is near, she seems remarkably composed. Over the course of several interviews, neither Janice nor her daughter shed a tear.

“I’m pretty open about all this, same as my daughter,” she said. “You don’t have to worry about upsetting her either.

“She comes to all my appointments with me. She’s heard it all including how much time I have left.”

Don’t you get sad sometimes?

“I’m sad all the time about it,” Janice said.

She turns her head and looks at her daughter sitting beside the bed. Her daughter smiles back at her.

“Look at the child I’m going to be missing and her beautiful friends and my son,” she said. “I’m afraid of leaving them.

“I want to be here to see my grandchildren, their graduation. I just want to be here for so much.

“I worry about her health, my son’s health, and I want to be here for them if they ever need me,” Janice said.

There was a time she was spiritual about her fate but now she’s not so sure.

“I look at very sick people and I wonder how can this be?” she asked.

“I’m spiritual in the sense that I believe in a higher power but I also believe that higher power wouldn’t make us suffer, because I’m suffering. It’s a conflict.”

Yes, yes, you’re thinking. Haven’t we heard all this before?

Since The Spectator’s original Code Red project was published in 2010, there’s been a growing awareness of the connections between the health of people and the wealth of people.

From public health departments to poverty-fighting groups to the Canadian Medical Association, it seems everyone’s now talking about the social determinants of health — the notion that your health is dependent on so many things that don’t immediately seem connected to health.

Code Red showed that some Hamilton neighbourhoods were living with Third World health outcomes — a 21-year difference in life expectancy between the best and worst neighbourhoods, a 22-year difference in the average age of a person showing up in the ER with signs of a heart attack or stroke, rates of psychiatric-related ER visits that were over 30 times higher in the worst neighbourhood than the best one.

Code Red also showed that those neighbourhoods with the worst health outcomes had the lowest incomes, the highest rates of poverty and less education.

Aren’t these cancer statistics just telling the same story all over again?

Yes — and no.

Overall, more men and more women are getting cancer in the poorer parts of Hamilton than the richer parts of Hamilton.

Not a staggering amount more, however, and that’s not completely surprising.

Aside from behaviour-related cancers, such as the vast majority of lung cancer cases caused by smoking, cancer is still a disease that strikes people somewhat indiscriminately.

Here’s what’s most worrisome about The Spectator’s cancer investigation.

While more men and women are getting cancer in the poorer parts of the Hamilton, far more people are dying of cancer in the poorer parts of the city compared to the richer parts.

The much larger variation in death rates between rich and poor suggests that surviving cancer is not nearly as random as getting cancer.

“It’s extremely alarming to see that there are significantly higher mortality rates in certain neighbourhoods and those neighbourhoods are low-income, vulnerable people,” said Dr. Barbara Strang, a radiation oncologist and head of the breast cancer site group at Juravinski Cancer Centre.

“We’re all so proud of our Canadian health care system and equal access and portability so if people can’t access appropriate health care because they’re poorer then that’s absolutely unacceptable,” Strang said.

The Spectator’s findings offer strong evidence that dozens, if not hundreds, of people in poorer parts of the city are dying unnecessarily from cancer each year.

The question is why is this happening?

There are a number of reasons, all of which will be explored in detail in next Saturday’s concluding piece of Cancer: A Code Red Project.

Smoking is a huge factor, perhaps the single most important reason for the differences between Hamilton’s rich and poor neighbourhoods.

The rate of smoking in the lower-inner city is vastly higher than it is in Hamilton’s suburbs, as some exclusive Spectator data will show next Saturday.

Smoking is associated with about 80 per cent of lung cancer cases but smoking is also connected to an increased risk of colorectal cancer.

More than one-third of the difference in overall death rates between the former City of Hamilton and the five suburbs can be attributed to lung cancer alone.

But that still leaves a lot of room for other explanations.

Access to primary health care is another reason. Education and basic health knowledge are others. So, too, are factors such as language and immigrant status, willingness to seek medical care and the ability to understand or follow treatment programs after a diagnosis of cancer.

But next to smoking, one of the biggest factors separating the inner city from the suburbs is the significant difference that exists in cancer screening rates across the city.

Neil Johnston is an epidemiologist and faculty member in McMaster University’s department of medicine. He was a collaborator on The Spectator’s original Code Red series in 2010 and the 2011 followup series, BORN.

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Neil Johnston, collaborator on the Code Red projects since 2010.

Johnston helped analyze the cancer data for this project as well. He’s not surprised with the findings because, he said, they’re “absolutely consistent with everything we’ve seen before.”

“This disparity, it disgusts me,” said Johnston. “What this should do and will do is engage the community in debate, and the debate is about social justice and what we will tolerate in our community.

“This is unfair, unreasonable, inequitable — all of those kinds of words come to mind.

“If people are dying at a higher rate from cancers in poorer areas of the community,” Johnston said, “what it strongly suggests is that programs that have been developed for the early detection of treatable cancers are somehow not being used to their best advantage in those areas.”

But that’s just one part of the problem, Johnston noted.

“In the middle of that, the process of dying becomes far more expensive,” he said.

Later detection means more advanced tumours, which require more advanced and complex surgery, more hospital time and more people involved in the patient’s care.

“All of that is taking resources away from elsewhere in the system,” Johnston said. “It’s an issue of social justice but it’s also an issue of efficiency and how we spend our tax dollars on health care.

“And we could be spending them a great deal better if there was a way to even out these statistics.”

Dr. Bill Evans, the recently retired head of the Juravinski centre, believes the new frontier for cancer is addressing the social and economic disparities that exist across communities.

“The health sector can only do so much because a lot of it is like horses out of the barn,” said Evans. “Clearly if we can detect cancers early, we can at least save people from more advanced disease and probably have much better outcomes in terms of cures or longer-term survival.

“But the root causes are more around education and socioeconomic status,” said Evans. “I often say that to have health, you need wealth.

“I once told a colleague that people like (businessman) David Braley, who are making jobs for people, were more important than she was as a medical oncologist.”

Marci Shea-Perry is executive director of Camp Trillium.

For pretty much all her adult life, cancer has been a constant companion; Camp Trillium, with its head office on Hamilton’s east Mountain, provides vacation experiences for kids with cancer and their families. It operates campgrounds at Waterford and Picton.

Over the past two decades, the 44 year-old has seen plenty of stories with happy endings and plenty that have ended with tears and heartache.

On a cold January night in 2011, however, the tables were turned on her.

Shea-Perry was snuggled up in bed reading a story to her daughter when she noticed a lump in her right breast.

She went to her family doctor, who reassured her it was likely “no big deal” and sent her for a mammogram just to be sure.

“After my mammogram, the technician said ‘You need to have a biopsy today,’ and I said, well, I can’t, my son has to go to the orthodontist, so sorry,” Shea-Perry recalled. “And she said, ‘You need to have a biopsy done today. Can you come back?’

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Marci Shea-Perry, head of Camp Trillium, had the tables turned on her when she was diagnosed with breast cancer two years ago.

“At that point I thought, OK this isn’t just ‘no big deal.’”

A week later, her family doctor called her at work and told her she needed to come to the office.

“I said, ‘Listen, I don’t have time for that, just tell me over the phone what’s going on,’” said Shea-Perry. “So she told me over the phone that it was breast cancer.

“You don’t really think those words are for you,” she added. “I’m the one who’s here to help people with cancer, I’m not the one who gets cancer.”

She texted the news — “Yeah, I know, texting, crazy eh?” she laughed — to her husband, Chris Perry, and then they prepared to deliver the news to daughter Mackenzie, then 11, and son Aidan, then 9.

“If you ask the kids, they’d tell you they thought we were going to say we were having a baby,” Shea-Perry said. “So we told them and their initial reaction was ‘Are you going to die?’ and that’s a natural thought, especially for kids.”

Within a few weeks, she had a lumpectomy and was informed that the tumour was triple positive — meaning it produced a certain protein and attracted the hormones estrogen and progesterone — and was somewhat aggressive.

“And I said, OK, kind of sounds like me — triple positive and a little bit aggressive,” Shea-Perry laughed.

“I thought maybe it’s like dogs and how they become like their owners.

“Maybe cancer is the same way.”

When her hair started falling out from the chemotherapy treatments, she told her hairdresser to just shave her head bald and be done with it.

“For me, losing my hair wasn’t as big a deal as it is for some women,” said Shea-Perry. “I’m a pretty natural person anyway. I didn’t wear a wig at all.

“But I think it was hard for my mom to see me with a bald head,” she added. “I made a conscious effort to always have a scarf on when I was visiting my parents.”

Shea-Perry is a eucharistic minister and reader at her Stoney Creek church, so she asked the priest — bald himself — if it would be uncomfortable for anyone if she continued performing her duties when she was bald.

“And he said, ‘Well, if I can do it, you can do it,’” she said.

A chance meeting with her surgeon led Shea-Perry to opt for a double mastectomy.

“She said ‘Your cancer is very aggressive. I see way too many women who do what you’ve done and I’m going to see them again in three to five years because it’s going to come back in the breast tissue for sure,’” Shea-Perry recalled. “She said it’s really sad to have to go through this again.”

She decided to have reconstructive surgery using her own body tissue.

“I didn’t want to be defined by my breasts,” said Shea-Perry. “That’s not who I am.

“But for my family’s point of view, aesthetically, just to look normal is probably helpful for them.

“I’d already put them through a time when I was a bald person of their family. Do I really want that concave look?

“So they did a tummy tuck and took the tissue from my stomach and made breasts with them, so you know … win, win, win,” she joked.

It’s been a little over two years since she finished her treatments.

Shea-Perry realizes she’s reached the same stage she’s seen with the families that pass through Camp Trillium.

“It’s the uncertainty of ‘Holy crap, is it going to come back?’” said Shea-Perry. “Am I strong enough to go through this again?

“I don’t want to say it’s in the forefront of my mind but it’s something I think about often,” she added.

“I’ve always been self-aware but I monitor myself like crazy now.”

Having cancer has given Shea-Perry a greater appreciation and understanding for the kids and families that pass through Camp Trillium every year.

“It’s kind of like that common bond,” she said. “This was the master plan.

“It was meant to be for me to understand at a different level.”

While survival rates are improving for many types of cancer, any cancer specialist who deals with patients must be prepared to deliver bad news and accept that not all outcomes will be happy ones.

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Dr. Barbara Strang, a breast cancer specialist, admits there are cases that are hard to shake off.

Yet there are some cases that are too painful to shake off.

“There are some situations where there’s so much misery in a person’s life — and often it isn’t just around the cancer, it’s around their social issues or family issues and those are things I can’t change. Honestly, those are the cases that bother me the most,” said Juravinski’s Strang.

“Dealing with a woman who has breast cancer and is also suffering spousal abuse and I can’t do anything to fix that — that makes me sad. That’s the kind of stuff that leaves me sleepless at night.

“I’ve had women who can’t get through their treatment because of their mental illness. Or a woman who has a bunch of kids and her husband’s just left her and she has a cancer and we know she’s going to die from it and she’s worried about what’s going to happen to her kids. That’s the worst.

“I can cope with the cancer part.”

“I can acknowledge that sometimes we can’t cure it and sometimes people’s lives end because of it but it’s those other things that drive me crazy.

“I’m a mom as well, so when I think of a breast cancer patient’s children and having to cope without their mom, that’s heartbreaking. You can easily put yourself in those shoes.”

Ken Ormerod is a 69-year-old retired truck driver who lives near Parkdale and Barton in east end Hamilton.

He’s been nervously eyeing the calendar for some time now. Five years of cancer-free survival is typically used as the unofficial goalpost for considering a patient “cured” — if there is such a thing — and October marks five years exactly since Ormerod was first diagnosed with lung cancer.

He’s part of a depressingly exclusive club — fewer than one in five lung cancer patients in Ontario makes it to the five-year mark, one of the worst survival rates for any type of cancer.

It was October 2008 when he got the news from his doctor. Ormerod had been losing weight and his appetite had disappeared.

An X-ray and a CT scan showed a small black spot the size of a dime on the lower part of his right lung.

Ken Ormerod018

Lung cancer patient Ken Ormerod is counting the days until he reaches the five-year mark for survival.

“Next thing you know, I’m on the slab having an operation about a week later,” said Ormerod. “Never had chemo or nothing like that, they just took part of the bottom right lobe out and you’re OK. It happened so fast, I never had a chance to realize what was going on.

“It was blessing in a way,” he added. “I didn’t really have time to sit and stew for months about what’s going on.”

In fact, it all happened so fast, Ormerod said he didn’t even have a chance to quit his pack-a-day smoking habit.

“I smoked right up until the day of the operation,” he said.

“The night before, I was out in the back shed having a cigarette and I was down at St. Joe’s at 5:30 or 6 o’clock the next morning. The last cigarette I ever had was in that shed the night before.”

The first cigarette he ever had was back in the English town of Preston, a former textiles hub north of Manchester that’s fallen on hard times since the end of the Second World War.

“They used to give you cigarettes in England basically to get you addicted to it,” said Ormerod. “There were no warnings or anything like that when I first started smoking.

“You went to a dance or a work party and at each plate there would be a little package with three cigarettes in it, so everybody basically smoked back then. That’s how they got you started.”

You can take the boy out of Lancashire but it’s tough to shake that north England accent out of the man, even when nearly half a century has passed.

Ormerod came to Canada in 1965 when he was 21. His first wife, also a smoker, died of lung cancer in 2005.

Ormerod hasn’t had a cigarette since he walked out of the hospital five years ago.

But he’s not yet prepared to consider himself one of the lucky ones.

“I never think about it that way,” he said. “The five years is almost up and if I get through this next CAT scan and there’s nothing else, then maybe I’ll look back and say ‘Hey, you were one of the lucky ones.’

“But it’s always in your mind that it could come back,” he added.

“You’ve always got that apprehension.”

More than 26,000 people in Hamilton were diagnosed with cancer between 2000 and 2009 and Janice McFadyen was one of them.

Steve Rudaniecki was another.

“Do I remember the day they told me I have cancer? Oh yeah, no problem,” he said, before breaking into a hearty laugh. “It was my birthday.

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Steve Rudaniecki has spent 10 years with a diagnosis of stage IV chronic lymphocytic leukemia hanging over his head.

“I went into the doctor’s office and he said ‘The bad news is you have leukemia.’ Well, happy birthday to me, I said. It’s a day I’ll never forget.”

That was 10 years ago, April 29, 2003, the day Rudaniecki turned 51. Chronic lymphocytic leukemia. Stage IV.

“That’s as far as you go,” he said. “They told me right from the get-go I was in an advanced stage.

“I knew leukemia was a death sentence.”

The prognosis for him back then? He had one to five years left, depending on how fast it progressed.

So far, he’s made it to 10.

“My wife is tormented with this daily,” said Rudaniecki, who lives in Hamilton’s industrial North End.

“I don’t know who’s affected more — her or me. You wonder sometimes is tomorrow the day?”

Like Janice, he too was told that he’d reached the end.

Last November, Rudaniecki’s doctor told him his leukemia had become resistant to the different chemotherapy treatments that had been tried over the years.

He was given three months to a year left to live. His wife, Susi, started checking out funeral homes.

“How many years have I got? I don’t know,” he sighed. “So I’ve got to make use of every day that comes by.

“If I wake up, I’ve got another day, thanks Lord. I’m not a religious guy by any means but somebody’s doing something for me.”

It’s a sunny summer morning and Rudaniecki is sitting at the kitchen table in the house he shares with Susi on Caroline Street North in Hamilton.

It’s the same house he lived in as a child.

For 16 years, he worked at the old Rheem factory on Barton Street, just a few doors away. He started there in 1971 for $3.67 an hour “and all the overtime you could eat,” he said.

“I’d sit here and listen for the warning whistle and say ‘Oops, time to go to work,’” said Rudaniecki.

“I’d run out the door and down the street and punch in before 7 o’clock. I could come home for lunch.”

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Steve Rudaniecki is counting on a new experimental treatment to prolong his life.

Rudaniecki ticks off a number of the same risk boxes as Janice. He lived much of his life in the inner core, he was a smoker and he, too, has been surviving on disability payments because of his long fight with cancer.

“It’s a blow to our ego, our self-esteem,” he said. “We used to walk around with a good amount of money in our pockets. Now, it’s ‘Geez, we’ve got two weeks to get to the end of the month, have we got enough to get through?’”

Ten years ago, he was travelling in the U.S. when he experienced chest pains. He made it home, then checked into the hospital right away.

Turns out he’d had a minor heart attack. As they were doing blood work, they also discovered stage IV leukemia.

Rudaniecki said his first doctor told him it was a hopeless case and there was nothing they could do. He got angry and switched doctors.

He started chemotherapy but he said it was so strong, he nearly died. He kept with it for just two days and then gave up. He gave up on everything, actually.

“I dumped the equivalent of probably $80,000 worth of pills and everything down the toilet,” said Rudaniecki. “I went into a depression. I hit the bottle for two weeks, refused all my doctor appointments.

“The doctor was calling here every day, his nurse was calling, my wife was crying every day,” he said. “Finally I agreed to go see the doctor just to thank him for what he had done for me up to that point.”

While he was there, the doctor convinced him to have some blood tests done. “I said OK, since I was there anyways. I went back up to his office, we chit-chatted for a bit about general crap and then the blood work came back.”

The doctor took a look, then casually tossed the report across the desk. Rudaniecki’s blood cell counts had made a stunning improvement.

“I had given up,” he said. “When the numbers turned around I thought, well, maybe we can fight this thing.

“It changes your way of life, it changes your thoughts,” Rudaniecki explained. “Before, I used to be able to fight somebody at the drop of a hat.

“Today? If I go down the road and a wheel falls off, oh well, who cares? I haven’t got time to argue with somebody.”

The improvements in his health petered out after a while, however. Same thing with a couple of other different types of chemotherapy.

Each time, his body would become resistant to the chemicals.

Last November, it looked like Rudaniecki had run out of options when once again the chemotherapy stopped working.

“The end is coming,” he said. “There’s nothing more they can do for me and there’s nothing left for me.”

The best-case scenario was another year.

Rudaniecki’s glands and lymph nodes began swelling grotesquely throughout his neck and throat, poking out around his collarbones and down through his abdomen and into his groin.

“When I’d look in the mirror, it was almost like looking at the elephant man because my neck was swollen so bad,” he said. “It was discouraging looking at it every day, knowing it was getting worse.”

Then, with hope fading, there was a possible breakthrough in late spring.

Rudaniecki’s doctor told him about a promising clinical drug trial for chronic lymphocytic leukemia that was recruiting patients in Hamilton.

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Steve Rudaniecki doesn’t know if he’s receiving the experimental treatment or a placebo.

It’s a two-part trial that is scheduled to last three years.

Patients receive two types of chemotherapy called bendamustine and rituximab, which are supposed to kill the cancer. They also take a pill called ibrutinib three times a day, which is meant to keep the cancer from coming back.

The chemotherapy drugs are real but patients don’t know if they’re receiving the ibrutinib or a placebo.

Rudaniecki said he faced a tough choice. When he read the information about the chemotherapy drugs, he said, one of the main side-effects listed is death. “So that was playing in my brain. Do I want to live for another year or so — a shitty life, but live — or do I go on this study and take a chance on dying the first day?

“That was a hard choice for us.”

Not for Susi it wasn’t.

“I begged Steve to go on this,” she said. “I can’t imagine life without him.”

Rudaniecki signed up for the trial. He started his first treatments in July.

“We decided this was our only chance,” he said. “If this doesn’t work, it’ll be just a matter of time.

“This is my last chance to grab that apple off the tree.”

 

How We Did It

Numbers are messy when it comes to science, particularly medical research

The numbers collected from experiments and clinical trials don’t line up nicely in neat rows, despite the impression you’re left with when you read about the latest cancer breakthrough.

Luckily, there are sophisticated mathematical tools that help organize this messiness.

Statistics are a way to try to bring some order to the numbers — to allow apples to be compared to apples, to show trends, to bring clarity to determining what’s a probable explanation and what’s not.

That’s especially important when it comes to cancer because the numbers can be very messy for a variety of reasons.

For one, age is an important factor. Cancer, despite what you might think, skews heavily to elderly people.

Cancer is also related to genetics, diet, the environment, general health as well as certain behaviours, such as smoking or excessive drinking.

Combine all of that and it can be difficult to tease out how and why cancer developed.

A couple of things we like to measure are how many people are getting cancer and how many people are dying from it so we can figure out ways to reduce the numbers in both categories.

But that means the rates being used have to give apples-to-apples comparisons from place to place and from year to year so we know what’s making a difference.

The simplest way would be to just take the number of people getting cancer — or dying from cancer — divided by the total population.

But that could be misleading, depending on the makeup of the population, because age is such an important factor with cancer.

How important is it? If you look at all cancers combined, almost 90 per cent of new cases and 95 per cent of cancer deaths occur in people 50 years of age and older.

So a community that has lots of young adults and children will have far fewer cancers than a neighbourhood with a lot of 70- and 80-year-olds.

To level the playing field, cancer specialists use a statistical tool called age standardization to allow for uniform comparisons.

First step is to pick a standard. For Canadian cancer statistics, the standard is the age makeup of the national population from 1991 — the proportion of people who were between the ages of 30 to 34, for example, and 45 to 49, and 70 to 74 and so on.

Then the population being examined — Ontario, say, or Hamilton — is adjusted so that its proportions for each age bracket match those of the standard.

The numbers of observed events, such as new cancer cases or deaths, are then adjusted to reflect the number of events that would be expected if the population being measured had the same age proportions as the 1991 standard. A key piece of information, though, is knowing the ages for each of the new cancer cases and deaths.

Using this age-standardization method, you can compare one place to another, or even look at how one place is performing from one year to another.

Cancer: A Code Red Project is based on data provided to The Spectator from Cancer Care Ontario, a provincial government agency.

The data includes the numbers of new cancer cases and cancer deaths between 2000 and 2009 for the amalgamated City of Hamilton, as well as Burlington, Grimsby, Brantford, St. Catharines, Niagara Falls, Welland, Port Colborne and Fort Erie.

The data is broken down for men and women, as well as four specific cancers: lung, breast, prostate and colorectal.

The Spectator also received cancer screening data for the same municipalities for breast, cervical and colorectal cancer for 2009, which was the most recent available year.

All of the data is broken down to the level of small geographic areas called census tracts, which are used by Statistics Canada to measure a wide variety of social, economic and health variables within urban regions of Canada.

There were 135 census tracts in the amalgamated City of Hamilton based on the previous census of 2006, and they match up well with the city’s traditional neighbourhoods and former suburbs. Because of data suppression and small population sizes, five Hamilton census tracts could not be used for mapping purposes.

The Spectator was unable to carry out age standardization of rates because privacy restrictions around health data prevented the release of the specific ages for each of the new cases and deaths.

We were able to use an alternate method to create age-related rates for all of the census tracts in Hamilton, Burlington, Brantford and the major centres in Niagara.

We created rates by taking the total number of cancer cases or cancer deaths for the 10 years between 2000 and 2009 and then dividing them into the number of people 45 years of age and older in an area. We then converted that figure into a rate per 1,000 people 45 and older over the 10 years from 2000 to 2009. The rates are not annual rates. They are rates that represent the cumulative number of new cases and deaths over 10 years.

This method strips out all people in a census tract or community who are younger than 45 and thus have a very low statistical chance of getting cancer or dying from it.

We used this same method to also create the same rates for Canada, to use for comparison purposes.

It’s not perfect, we acknowledge, and there are limitations to our methodology.

The populations of census tracts would have fluctuated between 2000 and 2009, and it’s possible that some people might have changed census tracts or even municipalities between the date of the 2006 census and the time they were diagnosed with cancer or died from it. The total number of cancer cases and deaths used to create the rates includes a small fraction that would have occurred in people younger than 45 years of age.

Cancer incidence, mortality and screening rates were then compared with selected social and economic variables — such as income, poverty levels and education — that are tracked by Statistics Canada. For this project, we used social and economic data from the 2006 census, which fell almost at the halfway point of the 2000 to 2009 time period of the cancer data we received.

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Patrick DeLuca has been creating maps and providing statistical advice for Code Red projects since 2010.

The cancer and socioeconomic data sets were then forwarded to Patrick DeLuca, a mapping and statistics expert in McMasterUniversity’s Centre for Spatial Analysis. He agreed to collaborate on a pro bono basis.

DeLuca used the data to create a number of maps.

Some of the maps are rate-based.

Some of the maps are quintile maps, which distribute the 130 census tracts into five quintiles. Each quintile represents 20 per cent of the 130 census tracts, from highest to lowest for the variable being measured.

The maps, rankings and rates were then analyzed to examine the connections that exist between cancer and socioeconomic variables in Hamilton’s neighbourhoods.

 

What is cancer?

The tragic paradox of cancer is that the disease kills people because cancer cells are programmed to be immortal.

Defining cancer is straightforward: Cancer is the uncontrolled growth and spread of abnormal cells anywhere in the body.

Incredibly, cancer starts when one rogue mutated cell out of the 50 trillion cells that make up the human body slips away from the normal controls that regulate how cells divide and how they’re killed off when necessary.

Each cell carries inside its nucleus a complete copy of a person’s genes — the individual blueprint that makes up each person. There are about 100,000 genes in that human blueprint, divided onto 46 X-shaped strands of DNA called chromosomes. The genes are the same in each one of your cells — what differentiates cells for specific tasks is which genes are switched on and which are switched off.

Those strands of DNA — deoxyribonucleic acid — are made up of two long sequences of compounds, called nucleotides, spiralled around each other. Think of DNA as a long string of four different-coloured beads in varying combinations. These beads would represent the four nucleotides — adenine, guanine, cytosine and thymine — and each pairs up with only one of the other four. That means the two long intertwined ribbons are mirror images of each other.

The length of this sequence is staggering. The DNA of each cell’s chromosomes contains about three billion pairs of nucleotides. Genes are simply short segments of these beads in the long sequence of the strand.

In an adult, cells can be grouped into three broad categories.

The cells of some tissues and organs stop dividing at maturity, such as nerve cells and those of the heart. When one of those cells dies, it is lost forever and not replaced. But the good news is that because those cells don’t divide, they can’t become cancerous.

Some cells, such as those in the liver or lung or cells that make up the outer shell of most tissues, divide throughout life, but only occasionally. When one cell dies, that’s the signal for a new one to be generated and the cell population of that tissue stays constant.

And there are some cells that are constantly dividing to produce the massive amount of cells needed to replace those lost from daily wear and tear — blood-forming cells, for example, or the cells that line the intestinal tract. These tissues require the constant division of relatively undifferentiated precursors called stem cells.

When a normal healthy cell divides, the 46 chromosomes are duplicated, then separated before the cell splits in two so that each cell will have the full complement of genetic material. That means all three billion pairs of nucleotides have to be encoded, decoded then reproduced — with no mistakes in the order of the pairs.

Since genes are short, specific sequences of nucleotide pairs, any change in their order can mean that a gene is altered, disabled or, in some cases, switched on.

When the DNA of a cell is altered like this, it is called a mutation. If a cell’s DNA suffers the right combination of mutations, it can become cancerous.

Things such as the sun’s ultraviolet rays or asbestos fibres or certain chemicals, such as those found in cigarette smoke, for example, are known to cause mutations in the DNA of a cell, even though the actual mechanisms might not be yet well understood.

Luckily for us, cancer is not a one-step process but one that can take many years of trauma to a cell. Cancer is a complex, multi-step process that may require from four to six progressive alterations of a cell’s DNA.

Unluckily, these alterations make a cancer cell different from a normal, healthy cell but not so different that the body recognizes the cancer cell as being a foreign object. If that were the case, it would be relatively simple to figure out a way for the body’s own immune system to attack a cancer cell, like it would with a virus.

Understanding exactly the right combination of mutations is part of the challenge facing oncologists, or cancer specialists.

It’s been discovered that our genes include a group called oncogenes. Dozens of oncogenes have been identified and, normally, these genes are part of the everyday growth and functioning of a cell. But a trigger, such as ultraviolet rays or chemicals in cigarette smoke, can switch on an oncogene so that it is no longer helpful to a cell but harmful.

One oncogene by itself may not be enough to turn a cell cancerous.

In fact, it may take more than one hit to turn on an oncogene, or it may take several switched-on oncogenes acting in unison. Oncogenes are like the gas pedal that will accelerate cancerous growth.

DNA also comes equipped with a brake, a group of genes called tumour-suppressors which help control disorderly cell growth. But a mutation can turn off the tumour-suppressor genes, disabling that control.

During normal cell division, tumour-suppressor genes act as an editor when the three billion pairs of DNA nucleotides are being copied.

If there are spelling mistakes, so to speak, or faulty stop and start signals between genes, the tumour-suppressor gene would shut down the cell-division process. The damage would either be repaired and the process resumes or, if the damage is too severe, the cell dies.

But when a mutation affects the tumour-suppressor gene, it’s as if the editor has fallen asleep at the switch. The cancer cell can carry on dividing, even though the new copy of DNA might have a significant number of mistakes.

It’s the combination of having the gas pedal pushed down and the brake no longer working that leads to the formation of a tumour.

A tumour begins life much as an embryo does — one cancer cell becomes two, two become four, then eight and so on.

Early progress of the tumour is microscopic and easily escapes detection. By some estimates and depending on the type of cancer, almost two years from that first cancer cell division the mass of cancer cells is still not much bigger than the head of a pin. By two and a half years, the tumour is the size of a small grape.

Cancerous cells in a tumour have also figured out an ingenious way to stay alive as the tumour grows and becomes more dense.

Because of their rapid, uncontrolled growth, cancer cells require a lot of energy and nutrients. Tumour cells secrete substances called growth factors, which entice the development of blood vessels into and around the tumour that supply the necessary fuel.

If cancer was just a matter of uncontrolled growth of abnormal cells, it could be attacked in a straightforward fashion: catch the offending lump before it interferes with the function of the tissue and cut it out. And, for good measure, zap the affected area with some radiation or drugs just to make sure that any stragglers are killed off.

But cancer is a devious foe and its deadliest weapon is the ability of a cancer cell to break away from the original tumour, slip through the wall of a blood vessel, migrate to another spot in the body, slip back out of the blood vessel, then lodge itself inside another organ or tissue. Thus, the whole process of tumour development begins anew at a secondary site.

No other cell can do this. A normal, healthy liver cell can’t break away, enter the bloodstream and travel to the lung, for example, and begin growing. But a cancerous liver cell can.

It’s this ability to migrate, or metastasize, that has made cancer such an efficient killer.

 

What is it like to hold a tumour in your hands?

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Dr. Shawn Forbes, a colorectal cancer surgeon, said holding a tumour is like “holding death in your hands.”

Dr. Shawn Forbes, a colorectal cancer surgeon at the Juravinski Cancer Centre: “You realize the incredible responsibility you have to your patient.

“You’re holding death in your hands.

“Treating colorectal cancer is very much a multidisciplinary activity, but surgery is still the mainstay of therapy. You breathe a little sigh of relief once it’s out, then move on to putting people back together.

“Literally and figuratively, people’s lives get turned upside down by a diagnosis of cancer. This is the start of a new, and hopefully, healthier chapter in their lives.”

‘Literally and figuratively, people’s lives get turned upside down by a diagnosis of cancer.’

 

 MAPS :

 

DAY1-AllIncidence

 

DAY1-AllMortality DAY1-Men-Incidence DAY1-Men-Mortality DAY1-Women-Incidence DAY1-Women-Mortality DAY1-LICO DAY1-NoEdu  DAY1-PsychRt

 

 GRAPHICS:

Overall cancer incidence

Overall cancer mortality

Rate comparison by income quintiles

Incidence/deaths by area

 Incidence by gender

Mortality by gender

 

 

 

 

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