CCSN president & CEO Jackie Manthorne's presentation at the 2014 CAPO conference!

Jackie Manthorne, President & CEO of CCSN, attended and was invited to make a presentation at the 2014 conference of the Canadian Association of Psychosocial Oncology in Winnipeg, April 30-May 2. The 2014 conference brought together interdisciplinary professionals to explore, share, learn and discuss the psychosocial aspects of cancer. CAPO’s annual conference convenes researchers, clinicians and community-based organizations from several professions, including: medical, psychiatry, nursing, psychology, social work, spiritual care, nutrition, rehabilitation medicine, occupational health and radiation oncology as well as representatives of community organizations and patient groups. Manthorne’s presentation was entitled Issues impacting cancer survivors: Results of CCSN’s Survey. This survey, conducted in June 2013, asked CCSN’s membership about patient

experiences with Canada’s healthcare system during and following treatment, and cancer survivorship issues. The Survey was completed by 128 patients, survivors and caregivers diagnosed with a variety of cancers. Issues identified were divided into five main categories: Post-treatment issues Psychological/mental health issues Changes to the family dynamic Difficulties transitioning back to work Financial issues Please click HERE to access the presentation.

What do cancer patients want?

By Jackie Manthorne

Presented at the Economic Club of Canada

April 14, 2014

Thank you very much for your kind introduction. And I would also like to thank all of you for attending today! I was hoping that Toronto wouldn’t be having a blizzard and that we all wouldn’t be sporting boots, parkas and tuques! Last week I was in Gatineau, where there was sleet, Vancouver and Victoria, where it was warm and the cherry blossoms were blooming and the trees were green, on to Edmonton, where it was warm but damp, and finally to Calgary, where the wet snow was temporary, so my sense is that right across the country, spring is finally emerging from our long, cold winter!

What do cancer patients want? Those of us working and volunteering at the Canadian Cancer Survivor Network strongly believe in the mantra “Nothing about us without us;” after all, patients, survivors and caregivers are the experts: they are living the cancer journey. So the first step in finding out what patients want is to ask them and then listen closely to their responses so we can work with them to find solutions to issues they identify as important to them. More often than not, these issues pinpoint gaps in our healthcare and cancer care systems.

Last year the Canadian Cancer Survivor Network conducted a members’ survey in which we asked what patients want, and much of what I am going to talk about today is what they responded and the conclusions we can draw from these responses.

Overall, patients told us that they were concerned about:

·         The physical side effects of treatment and surgery and psychosocial or mental health issues.

·         Changing family dynamics.

·         Financial issues and difficulties transitioning back to work.

·         Fear of cancer spreading or coming back.

The physical and mental side effects of treatment are wide-ranging and are the primary concern of cancer patients and survivors.  Survey respondents reported many physical side effects from their treatment and surgery.  These include lymphedema, facial and intestinal reconstruction, neuropathy, and other debilitating physical issues. Pain resulting from nerve damage, scar tissue, and surgery is a continuing issue for many patients and survivors.

Patients told us:

·         “I had a significant defect on my face from reconstruction, so dealing with seeing it every day was tough.” 

·         “Chemobrain. I mean, memory issues, difficulty sequencing. Not being able to keep up with others.”

·         “Fatigue.”

·         “Impotence and incontinence after prostate cancer treatment.”

·         “Radiation caused rib pain for two years.”

·          “I developed neuropathy which I would like to go away.”

·         “I had bladder cancer, and incontinence is an issue I have had to face; although I understood that this can happen after treatment and surgery, it is hard to face day after day.”

Mental or psychological side effects patients told us about include:

·         “I struggle with body image issues after my mastectomy.”

·         “Fear of dying before my children grow up.”

·         “It is generally thought that once you have completed treatment and a certain time has passed, you are now ‘cured.’ There is little understanding of the fear and anxiety that every survivor feels that it could return.”

·         “Fear, stress and isolation.”

·         “I became the problem; I am no longer seen as a problem solver by my children.”

·         “It's a strange world when you're 30 and anyone else you've known that's had cancer is dead.”

Some patients reported seeking help, but many reported working through these and other psychological issues on their own, with family and friends, or in cancer support groups.

Lymphedema, or swelling in the arms or legs, is a serious and frequent concern among cancer patients and survivors. It can occur right away, or years after treatment ends.  Aside from the physical problems it creates, it is also a barrier to returning to work and the cause of additional costs, since government coverage of sleeves is uneven across the country, and patients without a health care plan must pay for physiotherapy, and those with plans often max them out before year end.

One patient who responded to our survey said, “The health care system should be paying for my lymphatic drainage massage. It is very costly, approximately $90 an hour, and now I'm on CPP disability and simply can't afford it. Yet, I need it! There is no financial support for treatment of lymphedema and this is so unacceptable.”

An Ottawa friend who subsequently died from metastatic breast cancer had such severe lymphedema in her left arm that it would pull her off a chair if she casually bent to pick up something on the floor without thinking about it and planning her movements first. Another patient in Montreal suffering from cancer of unknown primary developed lymphedema in both legs and was no longer able to go to her office to work; luckily, she was able to work from home, although she was in constant pain, and her income was reduced.

How can we help patients deal with the physical side effects of treatment and surgery and psychosocial or mental health issues?

CCSN has been speaking to politicians and other decision-makers about establishing rehabilitation services for all cancer patients and survivors suffering from lymphedema and other ongoing side effects, no matter when they occur in each patient or survivor’s cancer journey. Heart attack and stroke patients and those receiving joint replacements receive rehabilitation to help them recover, get back to work, and go on with their lives. While some patients in our survey reported receiving some rehabilitation services post-treatment, most did not. Without similar services for cancer patients, ongoing side effects from surgery and treatment may continue to impede total recovery.

Most patients reported a sense of abandonment once their cancer treatment ended:

·         “I am having to deal with the loss of the people and trust that was there while everything was being done from the very beginning and to the last day of radiation.”

·         “The 'safety net' was gone once I stopped all the visits to the specialists.”

·         “Once treatment was finished, I was on my own, working with my family doctor. If I had any issues regarding the cancer or problems from treatment, I would always ask myself, how much does a family physician know about cancer? I was always thinking that hopefully, he knows what he is talking about!”

This strong feeling of abandonment among cancer patients is so widespread that the Canadian Cancer Survivor Network has been discussing the feasibility of continuing cancer patient navigation post-treatment with provincial politicians and other decisions makers. This would enable patients, survivors and caregivers to access information, services and help from cancer experts whenever they need it.  Ongoing cancer navigation should also help prevent the late diagnosis of recurrences and metastasises and result in a better quality of life for survivors who still suffer from treatment side effects.

Another important issue that patients have identified is changes in family dynamics.

Our survey is not the first to bring to light the physical ramifications of cancer treatment on sexual function and intimacy, which may cause additional mental health issues.  Body image issues are cited, as are emotional distance and in some cases separation from spouses or partners. Respondents cited loss of intimacy and the ability to fulfill a partner’s needs as a frequent side effect of treatment:

·         “I have trouble feeling close to my spouse at times, and I feel no sexual desire.”

·         “My husband became physically distant. He was very helpful and always supportive but we never made love after the chemo. Now, nine years later, it is okay.”

Several patients reported that their relationships ended as a result of their cancer.  Partners were reportedly unable to deal with the challenges and left because of the loss of intimacy, or cheated on the cancer patient or survivor. These occurrences were linked to a sense of isolation and depression. Relationships with children, parents and other family members sometimes changed as well.

·         “One child wanted to help me, but he was physically affected by stomach pain and worried a lot. The other child could not cope to see me so ill and went to live with his father for a while. My partner seemed supportive; however, he went off to have an affair with someone who was very well endowed. We are no longer together.”

·         “I was a single mom wishing to spend more time with my adult child. She was afraid she may contract cancer and shunned me. She had difficulty being around me and seeing me vulnerable.”

·         “Three days after diagnosis, my boyfriend left as he ‘couldn't handle it.’ I found people didn't know what to say to you or they expected you to be back to 'normal' when you are feeling anything but normal.  And when I was concerned about a recurrence, my mother unintentionally said some damaging words that put a strain on our relationship for a while.  She just didn't know what to say, and told me ‘well, at least you've lived a good life.’ I was 36!”

However, the effects of cancer on patients’ relationships with the partner and family can also bring people closer together. Many patients also reported that their relationships had improved post-diagnosis, with families being drawn closer together and priorities made clear. Some patients who had suffered a broken relationship reported that their new relationships were stronger than their previous, broken relationships.

·         “I think my family is valuing me more.”

·         “My husband and I have always been close, but we are even closer now, realizing that life is short.  Little things no longer bother us.”

·         “We are more open and honest about everything:  health, emotions, love and well-being. It has created a close bond between me and my entire family.”

·         “Got divorced. But got a new partner. Life improved greatly.”

·         “We are a lot closer and tell each other "I love you" on a daily basis.”

Again, access to continuing cancer patient navigation services would enable patients, survivors, caregivers and family members to deal with not only the ongoing physical side effects of cancer surgery and treatment, but also the psychological issues and adjustment to changed family dynamics and the “new normal” patients and their families experience.

An additional concern expressed in our survey of members relates to financial issues and difficulties transitioning back to work.

The Canadian Cancer Society, Manitoba Division and the Canadian Cancer Action Network’s study entitled Five-Year Action Plan to Address the Financial Hardship of Cancer in Canada: A Call for Action was the most recent of several studies of financial issues experienced by cancer patients.[i]

Study findings included the following:

“Nine out of ten Canadian families touched by cancer reported some form of financial challenge as incomes declined and household costs rose. For some, a cancer diagnosis started a financial tailspin that pushed ordinary people over the edge, resulting in debt, distress, bankruptcy and even a lifetime on social assistance.

“What emerged in this study was a consistent picture of financial hardship caused not by a single challenge but rather a combination of factors that created a perfect storm as sick leave and vacation time was used up and costs increased because of day-to-day living costs and unforeseen expenses from drugs and medical equipment to child care and travel increased. Surprisingly, parking costs at treatment facilities were more than a minor irritant, they were a major expense.

The report went on to say that, “These issues are compounded by a third factor:  A lack of awareness and a false sense of security have left Canadians unprepared to deal with these challenges, both as individuals and as a society. Most Canadians do not know that a cancer diagnosis has caused some people to declare bankruptcy, lose their homes, lose all of their savings, make less than optimal treatment decisions or become dependent on taxpayer-funded programs for the rest of their lives. Until cancer comes into their own lives, they believe the myth that all health care is free. Most never imagined that they could face such difficult challenges at such a vulnerable time of their lives. The reality comes as a shock to many.”  

This shock and frustration was voiced by many patients who responded to our survey:

·         “I had complications and multiple surgeries, which had me off work for three years. I was single, self-employed and had previous employment doing physical work as a home support worker. I had no money coming in and had to spend my savings to live for three years.”

·         “I received a very small amount of medical financial assistance from the government.  I needed to have it supplemented by asking friends and family for assistance, as what the government paid wouldn't even pay my rent.  The government then said I could not receive 'any' funds if I was receiving assistance privately.”

·         “Even when you have a job and benefits, you still take a big hit financially, especially if you are the only wage earner. A lot of us have difficulties making ends meet while working, and when your salary is cut even further, it’s a major juggling act.  Also, after cancer the cost of medications are very expensive. If there are changes made in your life that affects your medical plan, you are basically screwed and have to pay for your medications. Again, another juggling act. Do I take the medication and let other things slide, or take the chance that I will get cancer again if I don't take the medication? In the end you still end up with financial difficulties.”

A recent Léger survey fielded by the Canadian Cancer Survivor Network also shed new light on the striking financial, decision-making and emotional burden the disease puts on cancer patients and their caregivers. 301 cancer patients and 201 caregivers participated in this survey, making it one of the largest caregiver surveys that we are aware of and providing new and important information on the role of caregivers in their loved ones’ cancer journeys. In fact, caregivers reported more difficulties in accessing treatment and necessary medications, difficulty finding flexible work options and loss of salaries than patients, which clearly points to caregivers’ role as cancer care navigators and managers. While one in five patients experienced difficulty in finding flexible work options while battling cancer, nearly one half of caregivers struggled to integrate care for loved ones into their work schedules, making the management of the disease and their income very challenging.

As such, the Canadian Cancer Survivor Network strongly recommends that caregivers, who reported receiving no significant outside help other than from friends and families, should not be left to fend for themselves. Caregivers should join patients in the centre of the circle as we move toward defining and implementing patient-centered care.

And to add insult to injury, Employment Insurance Sickness Benefits last only 15 weeks, certainly not long enough for someone going through cancer treatment, and Canadian Pension Plan Disability Benefits are extremely difficult to access. CCSN will continue to raise awareness among decision makers of this gap in our social support system and to push for change so that cancer patients are not cut off EI Sickness Benefits in the middle of treatment, and often forced to return to work before they are ready.

Return to work was often a struggle:

·         “I made the transition back to work, but it was an effort. My employer tried to reduce my hours from a full-time to part-time job.”

·         “I had a very slow recovery due to high doses of chemo. I was let go from my job as I could not return to work full time in six weeks.”

·         “The resulting lymphedema in my left leg due to tumour removal has limited the time I can spend standing. I can now work as a teacher only part-time instead of full- time.”

·         “When I went back to work, my manager promoted a junior above me in case I got sick again. I left that place of employment but never found another place I enjoyed as much.”

Financial issues identified by patients also include lack of timely access to drugs and medications as well as the cost of drugs already alluded to above.

When you are diagnosed with cancer, you want timely access to the best medicines to stop your cancer in its tracks, to prevent it from recurring, and to stop it from spreading.  If it has spread, you want immediate access to the best medicines to stop it from progressing and to maintain pain-free quality of life.

But depending on where you live in this country, you may not have timely access to the best medicines, and even if you do, you may not be able to afford them!

The Léger survey revealed worrisome gaps in access to drugs: one in six patients and nearly one-third of caregivers reported difficulty in accessing current or effective treatment options and reimbursement of drug costs. And over one in 20 patients and one in five caregivers experienced difficulty in accessing medicine, When you translate this into the number of Canadians who are likely to develop cancer in their lifetime – two in five, according to the Canadian Cancer Society, we are talking about thousands of people who have difficulty accessing cancer meds every year.

One patient who responded to our survey of members said this: “Make all cancer drugs available. Some are not available even though they have been shown to be beneficial. Also new drugs are often not funded and are slow to enter the system. These drugs are too expensive for most people to afford. The alternative is to die. Think of that if you can.”

Why is this so?

One reason is the long and winding road of drug approval in Canada, starting with Health Canada and proceeding through either the pan-Canadian Oncology Drug Review or the Common Drug Review and continuing through each province and territory, with the addition of the Council of the Federation’s Pan-Canadian Pricing Alliance.  Creating solutions to the long delays in drug approval is beyond the scope of this talk, but there is certainly an unacceptable delay in accessing new medicines, often years. It is unclear what consequences these long wait times for access to new drugs have on patients. Are some patients not receiving the gold standard of treatment compared to patients in other countries? Certainly there are no safe wait times for patients living with metastatic cancer.

A second reason for access difficulties experienced by patients is the fact that healthcare is a provincial/territorial responsibility, and public coverage of any given cancer drug (or any prescription drug, for that matter), varies from province to province – a postal code lottery of drug access. What is available in one province may not be in another, despite the fact that the drug in question has been approved for use in Canada. Or, it may be available under the formulary in one province but not in another.

Making cancer medications available and affordable to all Canadians is not only fair, it also makes economic sense.  I might add that we are working on this issue in coalition with our over 40 partner groups as well as stakeholders in other chronic disease organizations.

Overall, survivors face difficulty with the loss of healthcare interactions, returning to work, and affording treatment costs.

·         Regardless of their experience with treatment, the sentiment of abandonment by the healthcare system or lack of post-treatment care was widespread.  The most common example given was lack of access to healthcare professionals post-treatment.

·         Many patients, survivors and caregivers expressed a desire for additional support in paying for drugs and other treatment-related items (i.e. lymphatic drainage massage, PSA testing, needles).  There was a sense of annoyance at the lack of or insufficient funding for survivors.

·         Barriers to returning to work were primarily physical – fatigue, lymphedema, or other side effects of surgery or treatment.  Some survivors also said that they were forced to leave their jobs due to cancer-related fatigue or complications.

·         Depression, anxiety, isolation and other mental issues were also identified as barriers to maintaining to a normal life, work, and functional relationships and family life.

·         Some patients had positive experiences returning to work or working through their treatment, but companies were identified as making efforts to ensure that the survivor was able to come back to work.

I have made suggestions about how some of these issues can be better dealt with by our healthcare and cancer care system, including making ongoing, lifelong cancer navigation available post-treatment to patients, caregivers and families and re-visioning recovery from cancer and the side effects of surgery and treatment as a rehabilitative issue.

The Canadian Cancer Survivor Network works to connect patients, survivors and other stakeholder groups with decision makers and the wider community to engage in discussion and to act on evidence-based best practices to alleviate the medical, emotional, financial and social costs of cancer and encourage research on ways to overcome barriers to optimal cancer care and follow-up for survivors in Canada.

We invite you to join us in this work.

Thank you.

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[i] http://www.cancer.ca/en/get-involved/take-action/what-we-are-doing/financial-hardship-of-cancer-in-canada-mb/?region=mb

Is mammography in danger?

Not all that long ago in Canada, the triad of early detection of breast cancer was breast self-examination (BSE), clinical breast exam, and mammography.  These three were the most widely used tools in the early detection of breast cancer.

However, in the late 1990 and early 2000s, breast self-examination came under attack, and even such organizations as the Canadian Breast Cancer Foundation modified their recommendations from promoting BSE to promoting breast awareness “because there is insufficient or inconclusive scientific evidence of an effective BSE technique, or an effective way for health care providers to teach it to women, or that BSE reduces breast cancer mortality.” [1]

Although clinical breast exams (CBE) should be part of a regular check-up, many health care practitioners have either not been taught the correct way to perform CBE or do not have the time to include one in a patient’s annual check-up. In addition, the Ontario Breast Screening Program, which used to offer a clinical breast exam as well as a mammogram for women aged 59-70, no longer performs CBEs.

And increasingly, mammography has been under attack.

The latest in a fairly long line of studies that criticizes screening mammography is the Canadian National Breast Cancer Screening Study, “Too Much Mammography,” published on February 11, 2014 in The British Medical Journal (http://www.bmj.com/content/348/bmj.g1403). This Canadian study followed approximately 90,000 women who were assigned to either receive regular mammograms or have no mammograms between the years 1980 and 1985. Researchers followed the participants for about another 25 years.

“During the screening period, approximately 660 invasive breast cancers were diagnosed in women who received mammograms, and about 520 cases were diagnosed in those who did not receive the screening. Among the women diagnosed through mammograms, 180 died of breast cancer, and 171 died from the group who were diagnosed without mammography.

“According to the findings, mammograms contributed to the over-diagnosis of breast cancer — meaning the screening detected a cancer that was not an actual threat to the woman’s health, but she still underwent chemotherapy, surgery, or radiation.”[2]

In her statement on the Canadian National Breast Screening Study, National Breast Cancer Coalition president Fran Visco says that the study “confirms NBCC’s long-held position that an enormous amount of resources and attention have been spent on mammography, despite the lack of strong evidence that screening significantly reduces mortality from breast cancer. The Canadian study found that 22% of women whose cancers were detected by mammograms were overdiagnosed and subjected to unnecessary treatment.”[3]

What’s a woman (or man) to do now?

Over 24,000 Canadians were diagnosed with breast cancer in 2013 – 23,800 women and 200 men[4] – so doing nothing is not an option, and early diagnosis is still important.

Already there are suggestions that we should take another look at breast self-exams and clinical breast exams.[5] Apparently one unexpected but positive outcome of the Canadian National Breast Cancer Screening Study was that “women who did not receive regular mammograms were instead monitored with physical breast exams that proved effective. All of the participants were taught to examine their own breasts once a month, and specially trained nurses examined women who were in their 50s. This low-tech approach, the researchers found, appeared to be as good as or better than regular mammograms at locating the serious cancers that needed treatment.”[6] Researchers went on to say that they were reluctant to address this, since it had not been the purpose of the study.

Confusing? Yes. Important? Undoubtedly. Implications for screening for other cancers? Evidently so:  several recent studies have reported on and described overdiagnosis and overtreatment of not only breast but also prostate and thyroid cancers, and to a lesser degree renal and lung cancer.[7] 

But when it comes right down to it, existing breast cancer screening methods are still breast self-examination, clinical breast examination and mammography.

And in fact, in a February 14, 2014 media release, Dr. Jacques Lévesque, President of the Canadian Association of Radiologists (CAR), the national association representing radiologists in Canada, stated that, “Women should continue to seek breast cancer screening using mammography, a form of x‐ray of the breast.” The CAR went on to say that they are very concerned that women will feel there is no need to pursue breast cancer screening, when in fact, several other breast cancer screening reports indicate the opposite.   

The CAR joined the American College of Radiology and the Society of Breast Imaging, who also have concerns that the report is “incredibly misleading analysis based on the deeply flawed and widely discredited Canadian National Breast Screening Study (CNBSS). The results of this BMJ study, and others resulting from the CNBSS trial, should not be used to create breast cancer screening policy as this would place a great many women at increased risk of dying unnecessarily from breast cancer.”[8]

The recently released CAR Practice Guidelines and Technical Standards for Breast Imaging and Intervention, as well as referral guidelines for medical imaging for physicians, encourage women to speak with their physician about the right time to begin mammography exams. 

The Canadian Cancer Survivor Network will continue to address issues in cancer screening as they arise. We encourage patients, survivors and caregivers to share their thoughts and opinions about cancer screening by writing to jmanthorne@ccsn.ca .

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[1] Look and feel, https://www.cbcf.org/central/AboutBreastHealth/Breast-Awareness/be-breast-aware/Pages/Look-and-Feel.aspx

[2] Doctors critical of mammography study, NapaValleyRegister.com, February 24, 2014

[3] National Breast Cancer Coalition Statement on The Canadian National Breast Screening Study, http://www.breastcancerdeadline2020.org/about-nbcc/newsroom/2014PressReleases/CanadianScreeningStudyStatement.html

[4] Canadian Cancer Statistics 2013, http://www.cancer.ca/~/media/cancer.ca/CW/cancer%20information/cancer%20101/Canadian%20cancer%20statistics/canadian-cancer-statistics-2013-EN.pdf

[5] A fresh case for breast exams by Roni Caryn Rabin,  The New York Times, http://well.blogs.nytimes.com/2014/02/17/a-fresh-case-for-breast-self-exams/?smid=tw-share

[6] Ibid

[7] PubMed, http://www.ncbi.nlm.nih.gov/pubmed/22472510

[8] http://www.acr.org/News‐Publications/News/News‐Articles/2014/ACR/BMJ‐Article‐on‐Breast‐Cancer‐Screening‐

Effectiveness‐Incredibly‐Flawed‐and‐Misleading  

Precautions to Take After Being Exposed to Asbestos

If you've been following CCSN for any amount of time, you've probably amassed a considerable amount of knowledge about the health complications that can develop after asbestos exposure. However, you may also have spent a considerable amount of time racking your brain for times when you could possibly have been exposed to asbestos.

If you've identified any potential exposures, you may now be dealing with intense feelings of anxiety. You’re not alone! This is a reaction we hear often at The Mesothelioma Center.

You’ll be relieved to know that many people who are exposed to asbestos never become ill. Those who do develop asbestos-related diseases were often exposed to high quantities of the fibers for prolonged periods of time. Most people – including those who inhale one or two fibers in the home or environment – won’t have to worry about mesothelioma.

That said, certain precautions can give you peace of mind. It’s important to monitor your health so that in the rare event that a tumor does develop, your medical team will be able to make a quick diagnosis.

If you've been exposed to asbestos, we suggest that you:

• Ask your primary doctor to make a note of your exposure in your medical history. If, in the future, you note any abnormal symptoms, your medical team will know that you have a history of asbestos exposure. This insider knowledge will help them narrow down the causes of your symptoms – and hopefully catch any malignancies in their earliest stages.
• Register for respiratory screenings and other routine imaging scans. These tests can provide easy tracking of your health over time. If your doctors note a decline in lung function (or any suspicious spots inside your body), they’ll be able to immediately pursue further testing.
• Schedule a home inspection to prevent future exposure. Knowing that your home is free from asbestos hazards offers you – and your family – added peace of mind.

Faith Franz is a writer for The Mesothelioma Center. She likes to spread the word about the benefits of alternative medicine.