For the past month, The Globe and Mail has reported on cancer from every angle: the hopes and fears of patients and their families, the battles waged by doctors and researchers, and the political struggles over cancer funding and treatment.
Erin Anderssen began the series by profiling a day in the life of 60 people with cancer. In 'I made noise, and things moved,' she writes about the new world of cancer, in which patients must take charge of their own destinies -- "To get the best care, patient advocates say, it's not enough to wait passively in an appointment room. You have to go out and get it."
Globe features writer Margaret Philp knows first-hand just how true that is. Ms. Philp writes in Cancer in the mind's eye about her personal story of being diagnosed with breast cancer, and how her battle to stay alive led her to take control of her own health. Along the way, she discovered a growing body of evidence that psychology and spirituality can help the body heal in amazing ways.
Ms. Philp and Ms. Andersen joined us Monday at 12:30 p.m. EST to answer reader questions. Your questions and Ms. Philp and Ms. Anderssen's answers appear at the bottom of the page.
Erin Anderssen has been working for the Globe and Mail since 1997, when she joined the parliamentary bureau. Erin has covered politics, crime and social trends, and now writes features for the newspaper. She has won three National Newspaper Awards, and co-wrote New Canada, a book based on a Globe and Mail special project. A displaced Nova Scotian, she lives in Ottawa with her husband and two boys, and a wooden boat crowded into the garage.
Margaret Philp has worked for The Globe and Mail since 1988, when she joined the Report on Business as a business reporter. She has won a National Newspaper Award for feature writing and an Atkinson Fellowship in Public Policy Journalism. She now works as a feature writer for The Globe. Since being diagnosed with breast cancer in March, 2005, Margaret has taken a special interest in cancer, its environmental causes, lack of prevention, and the human toll. She lives in Toronto with her husband and four children.
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Rebecca Dube, globeandmail.com: Welcome to Ms. Philp and Ms. Anderssen, and thanks for joining us today. I wonder if you could start off by talking a bit about what you've both learned about cancer -- Ms. Anderssen from writing all these stories, and Ms. Philp from both personal and professional experience. Erin, what did you learn in the course of your research that surprised you most; and Margaret, what do you know now that you wish you'd known back when you were first diagnosed with cancer?
Margaret Philp: For me, the issue is not that I wish I'd known when I was diagnosed, but that I wish I knew long before I was diagnosed and what I now know. In other words, I think that stress in my life played a role in the development of my cancer. I don't mean that it caused my cancer necessarily. But I think my disease was aided and abetted by stress that in many instances was self-imposed. With four kids and a full-time job, I was running around from one responsibility to another, never spending a minute on personal time for myself. I remember wanting to do yoga, but telling people I was too busy. I told myself that was okay, that it was a stage in my life that would pass when the children were older. It never occurred to me then that perhaps I wouldn't be here when the children got older -- that my life is now and not when the children get older.
I now believe that this time we take for ourselves for peace or spiritual reflection are important to body and soul. I no longer discount these things as flaky or the domain of people with too much time on their hands. As a society, I think we have to slow down. As individuals, I think it is incumbent on us to take the time to live our lives at a walking pace, not running. I believe our physical health is at stake, and there's a growing body of science to suggest it is.
Erin Anderssen: One of the things that surprised me most about my work on the series was how cancer has become, in many cases, a chronic disease. I interviewed people who have been going through treatment, in one form or another, for roughly 10 years. I think we often imagine that cancer is the kind of illness for which you receive treatment, and then carry on. But treatment has its own side effects. And in a real way, cancer is chronic whether you are actively fighting it or not it is one of those illnesses that has a huge psychological impact. You have to learn to live with the fear and worry of it coming back, or that it is lurking hidden somewhere inside you. It is also why it is seems like such an oversight not to focus more on the mental health of cancer patients.
Roy Preshaw from Saltspring BC writes: Question for Ms. Philp: You have eloquently extolled the virtues of complementary medicine and psychosocial support for those battling the diagnosis of cancer. In Ontario, your own therapy with herceptin is subsidized by the provincial government, but Ontario has so far refused to subsidize Avastin for metastatic colorectal cancer. In an ideal world, all cancer patients should have access to whatever form of care they choose to pursue. Given current financial constraints, would you prefer that Ontario spend more money on complementary medicine/psychosocial support for cancer patients -- or fund Avastin?
Margaret Philp: I don't see funding Avastin or funding psychosocial support as either-or propositions competing for the same dollars. The studies done in Canada on distress in cancer and efforts to diminish it have routinely shown that it saves money to offer cancer patients emotional support. They are less likely to go to emergency departments with side effects of their treatment or disease, and people with metastatic disease are far less likely to follow expensive, last-ditch chemotherapy regimens that seldom extend life for long and often greatly impact the quality of the patient's final weeks of life.
One meta-analysis of the research -- that is, a study that combines the findings of all the existing studies of the issue done to date -- concluded that providing psychological and emotional support to cancer patients cuts the cost of their medical treatment by 20 per cent. This is the financial argument, which says nothing of the compassionate urgency to deal with distress in cancer. Again, when we look at the research, the majority of cancer patients are suffering severe levels of distress following their diagnosis. Depression is very common. So if cancer care in Canada can take strides to soothe that distress and save money while they do, why would the system not embrace programs like support groups, yoga and meditation classes?
I have attended a fund-raiser for a friend who was raising money privately to cover the steep cost of Avastin to prolong her life long enough to see her three-year-old child attend grade one. When I was introduced to Herceptin, my oncologist told me I would have to pay $50,000 at a medical clinic in Buffalo, New York. I would never suggest psychosocial support instead of a life-saving or even life-prolonging treatment. Rather, this support is something I believe can only help with medical treatment.
Baldev Sood from Toronto writes: Some time I wonder that there is no political will in the world to have a healthy planet. Cancer is caused by not one but many factors. The major factors being environmental, i.e the air we breathe, water we drink and the chemical-laden food we eat, plus stress of the 21st century. We have let out a monster. How do we control this monster without political will?
Erin Anderssen: Thanks for your question. What struck me as I was interviewing many of the Canadians diagnosed with cancer was how often they told me that they didn't fall into any of the high risk factors: They ate well many of them organic food products they exercised, they were in good health. That certainly raises questions. I think we are still trying to figure out the causes of cancer it is likely many factors, as you say. And certainly our concern about the environment should be based not just on reducing cancer rates.
Consumers also have control in what foods we choose to buy, in what standards we insist on from our companies. Why we do insist on buying, for instance, so many bleached items like paper towels, toilet paper and diapers when we know the chemicals that this process releases into the environment? If more people made conscious decisions, a market would be created for more environmental products, and costs would come down.
In the course of researching the story, I had an interesting conversation with Simon Sutcliffe, who is head of the BC Cancer Agency and also vice-chair of the Canadian Partnership Against Cancer. He said that people are often focused on what the government can do to reduce cancer rates. But individuals also need to ask themselves what they can do whether it be eating a healthier diet, getting more exercise, or being intentional consumers.
Margaret Philp: I agree that cancer is a mixed brew of factors that include our environmental exposures and our chaotic, stressful modern lifestyles. I think we have let out a monster. But I think it's important not to despair; it's only a beginning, but we are starting to get a handle on it.
Our government is finally taking a hard look at 500 chemical compounds like bisphenol-A that are dangerous and pervasive in our every-day, convenience-driven lives. Bisphenol-A mimicks estrogen and is present in the hard plastic water bottles we carry in our backpacks, the water coolers at the office that we choose thinking they provide a healthier alternative to tap water, and the lining of the tin cans we buy at the grocery store. I have searched high and low for tinned tomatoes that are not lined with the resin containing this dangerous chemical, to no avail. Where possible, I buy tomatoes in glass jars, but they're hard to find. I even canned my own tomatoes this summer for the first time ever. I felt like a pioneer, and the thought occurred to me that for all the advances of modern industry, there I was engaged in an activity my grandmother would have done at my age (in an era when cancer rates were far lower, I might add).
The only way to create political will is to have the public pressuring the government. Maybe I'm na´ve, but I feel excited that more and more people are loudly expressing concerns about the environment and the need for change. And I believe that government regulation, consumer product manufacturing, and even maybe food production processes will start to change in the coming years. This is just the beginning. Take heart.
Kirk Miller from Canada writes: There is a thread through your stories on the importance of patient navigation and the lack of an integrated approach to managing the end-to-end patient care requirements. What examples could you point to (groups or organizations) as leaders in providing solutions to closing the loop on patient navigation and making the patients and their advocates respected members of the care team?
Erin Anderssen: Thanks for your questions. One of the keys to patients being full participants in their own care is information. There are many non-profit organizations that have excellent resources to assist Canadians after a cancer diagnosis. The Canadian Cancer society is a good place to start. Many support groups will link newly diagnosed patients with people previously diagnosed with the same kind of cancer an excellent way to get emotional support as well as tips on managing your own care. Organizations like Willow Breast Cancer Support Canada will fax or send women diagnosed with breast cancer a customized information packet on their particular form of cancer. Since family caregivers play such an important role in providing a patient with support, the BC Cancer Agency is started a new program offering training sessions to family members involved in that care.
However, the truth is that while numerous studies have identified patient navigation as something cancer patients want and it is a program that works well in other countries like Britain, as Andre Picard wrote about earlier in the series it is a concept that has been slow to take off in Canada. The Saskatchewan branch of the Canadian Cancer Society has taken a unique approach, following focus groups they held in the province. They used some of the funds available to them to hire Mary Klaassen I wrote about her on Saturday a nurse who is able to work as an patient advocate, independent of the province. The resources she supplies are not limited to clinical care. While this program is more manageable in a smaller province like Saskatchewan, it is certainly an interesting initiative.
But as it stands now the patient has to take control using whatever resources they can access, asking about programs that are available, conducting their own research, relying on friends and family.
Margaret Philp: I mentioned a few examples in my story on Saturday. One is the integrative medicine departments of some of the big U.S. cancer centres like M.D. Anderson in Houston and Memorial Sloan-Kettering in New York. The idea here is that patients can plunge into as many therapies as they choose -- be it diet counselling or therapeutic touch or meditation or a regime of vitamins and supplements -- and it's part of their file. They are not left, as I was as a cancer patient, to explore these options on their own with absolutely no support from oncologists.
In my own case, one of my oncologists appeared quite frustrated by my ongoing questions about vitamins and supplements I was interested in trying, and in one instance ranted about how all these claims are made about natural remedies with no scientific evidence to back them up. But if there is little to no funding for science on alternative remedies, the science does not get done and it is cancer patients who potentially suffer. I found the us-versus-them attitude of my oncologists and some of the alternative health-care providers I consulted to be very distressing and counter-productive. With integrative medicine, these frictions dissolve. Everyone is on the same page. The oncologist knows the patient is not taking some dubious supplement that could cause harm, and the patient feels the freedom to explore other options to chemotherapy, surgery, and radiation if they so choose.
The Centre for integrated Healing in Vancouver was a Canadian example, the only clinic providing integrative cancer care that receives public funding in this country. It is a smaller version of the big integrative medicine centres in the United States, but seeks to do the same thing for patients on a more modest scale.
None of these programs deals with navigation, however. Nova Scotia has patient navigators in its cancer-care system, but there are few of them and they are overworked. Quebec has nurse navigators tied to hospitals. Other provinces like Manitoba and Alberta are looking at hiring patient navigators as in Nova Scotia. But some people believe these navigators, while a welcome first step, are band-aid solutions for a system that has deeper problems when it comes to affording respect to patients and their advocates. From my own experience, I would say that those who advocate for themselves, becoming a thorn in the side of oncologists and nurses wherever necessary, receive better cancer treatment. Hard as it is, cancer patients can never relax and believe their case is being properly handled. They must be vigilant because files get lost, appointments get postponed, and wait times get stretched.
At Sunnybrook where I was treated, I had to fight to see my own file. I had never seen my own pathology because the hospital charged a prohibitively high fee for copying each page. And even when I saw the file, it was done surreptitiously by a nurse who told me in the clearest terms that I was not supposed to see it. Excellent though my treatment was at the hospital, I believe its approach to my information suggests a paternalistic attitude to cancer patients and a failure to respect our right to know everything about our treatment.
Rebecca Dube, globeandmail.com: Thanks to both our guests for joining us online today, and thanks also to everyone who sent in questions. Ms. Philp and Ms. Anderssen, any closing comments?
Erin Anderssen: I want to extend a final thanks to all the organizations and individuals who helped the Globe and Mail with our cancer series.
One of the messages that came through over and over again in the stories that I wrote is that cancer patients need to be able to talk about the disease openly and frankly, to their doctors and to family and friends. The health care systems need to continue to develop programs that cover the emotional needs of patients, to alert them to the resources that are available and to identify patients who are struggling most to navigate the system. But outside of their medical experience, cancer patients said, over and over again, that they needed their friend and family to be willing to talk to them about the disease in a more honest way than often happens.
But there were also a lot of stories of hope and we should be able to look within the tragedy of the disease and see those as well. Canadians told us of how a cancer diagnosis had brought about deeper relationships with loved ones, or altered their life's priorities. I remember the stories of the couples who had just started dating when a cancer diagnosis came along and yet were able to face it together. Or people who got married even in the face of a terminal illness. And the many people who face a cancer diagnosis, and survive. The series was extremely important for its work on gaps in the health system and new scientific process, but it was also about generosity and kindness and being resilient in adversity. This is the part that as a writer, I will always remember.
Margaret Philp: Thanks to everyone for their questions. I feel encouraged by the level of passion and interest among Canadians for tackling cancer; both the environmental causes that may help us prevent the disease in the first place and the problems of a medical system that still provides a differing level of care to different Canadians, depending on where they live and, to some extent, who they are. I think as journalists we need to be writing more about this. And as Canadians, we need to be taking responsibility for our health wherever possible -- eating lots of vegetables and exercising regularly, for example -- because we can make a difference. But we also need to vote with our feet: We need to buy food that has not been blasted with pesticides, purchase products like detergents that do not contain harmful, cancer-causing chemicals, and pressure government to address issues such as clamping down on the carcinogens that are currently allowed in many consumer products. I guess my message is this: Whether we are fighting cancer now or want to prevent ever getting it, we are not powerless.