Network News - Summer 2010 - Canadian Breast Cancer Network

network news
SUMMER 2010 Vol 14, No 3
ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
Breast Cancer:
Economic Impact and
Labour Force Re-Entry

IN THIS ISSUE
06
10
11
13
15
17
21
23
25
27
Breast Cancer Survivors Speak
Out About Financial Issues
Gradual Return to Work Following
a Breast Cancer Diagnosis
A Day on Parliament Hill –
A Survivor Advocate’s Story
Coping with Cancer:
Employment Insurance Sickness
Benefits Petition
“That’s not my jurisdiction…”
You Do Have Choices: Breast
Screening for Women with
BRCA1 or BRCA2 Mutations
Preventing Recurrence
Saves Live
CBCN Director Lorna Marshall
Participates in Scientific
Peer Review of Breast Cancer
Research Proposals for the
US Department of Defense
The Importance of Breast
Self-Examination
Working Together for Patients
with Metastatic Breast Cancer
Help Us Make a Difference
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PRESIDENT’S REPORT
Cathy Ammendolea,
President of the Canadian Breast Cancer Network
This issue of Network News is dedicated to
CBCN’s latest research report, Breast Cancer:
Economic Impact and Labour Force Re-Entry.
The report was designed to examine the financial impact of breast
cancer by highlighting the direct and indirect costs of breast cancer
faced by Canadians and their families and the impact of a breast
cancer diagnosis and treatment on labour force re-entry. A survey of
446 Canadians with a recent breast cancer diagnosis was conducted
in 2009 by Pollara public opinion and market research firm.
The economic burden on patients and their families may include the immediate cost of
treatment, out-of-pocket expenses such as supportive care medication, child care expenses,
etc. Patients face fi nancial challenges long after their initial diagnosis and treatments.
Future costs and time for cancer surveillance, follow-up care, treatment of persistent
symptoms such as pain, chronic fatigue, lymphedema and of course the psychological
effects are all a reality for these patients and their families. Out-of-pocket expenses vary
depending where survivors live.
Patients I work with at my local hospital often have fear and mixed emotions when they are
ready to return to work; relief, trepidation, hope, and perhaps awkwardness are routinely
described. The discussion of side effects and how to manage them in the context of work
is often a concern. They feel vulnerable, which often leads to anxiety about the impact of
possibly losing some or all of their income. For many families, financial loss creates a critical
situation, adding despair to an already stressful situation created by a cancer diagnosis.
However, many patients continue to work productively despite their breast cancer diagnosis.
Continuing to work is vital for a sense of well-being. Work is also an essential source of income
for many families.
Many patients become overwhelmed, thinking perhaps they will not be able to carry out the tasks
they used to perform before a breast cancer diagnosis. This is understandable, since most patients
experience surgery, chemotherapy and radiation treatments as
the management course for their disease, leaving them very
tired and weak. Some wonder how they will fit back into the
workplace after undergoing such an extreme experience.
Side-effects of treatment can hinder some patients from
performing their jobs, particularly if the job involves
physical activities such as heavy lifting, walking and
standing for long periods of time.
The most important thing for patients is to return to a workplace
that offers them support. Patients who go back to a supportive
workplace often report less anxiety and less psychological stress.
Flexible work hours to meet treatment schedules and doctors’
appointments are the most frequent workplace accommodation
required by people living with breast cancer.
CBCN president Cathy
Ammendolea addresses the media
at the Breast Cancer: Economic
Impact and Labour Force Re-
Entry
research report launch on
Parliament Hill on May 27, 2010
Photo: Tiffany Glover
2

CHIEF EXECUTIVE
OFFICER’S REPORT
Jackie Manthorne, CEO
Breast Cancer Network; Photo Credit Brian Jackson
CBCN launched its latest research report
Breast Cancer: Economic Impact and Labour Force
Re-Entry on Parliament Hill on May 27, 2010, firmly positioning breast
cancer as an economic as well as a health issue. The first report of its
kind, Breast Cancer: Economic Impact and Labour Force Re-Entry shows
that Canadian women diagnosed with breast cancer experience significant
financial burdens during treatment and face unexpected hurdles when
re-entering the workforce.
“This groundbreaking report highlights the direct and indirect costs Canadian women and their
families face while battling the disease. It provides a timely opportunity for government officials,
employers and other service providers to gain valuable insights into how breast cancer patients
use existing benefits and programs,” stated Cathy Ammendolea at the launch on the Hill.
“This is a critical time to raise these issues,” noted Marsha Davidson, Executive Director of
the Breast Cancer Society of Canada, the main funder of the report. “Breast cancer has a
devastating effect on women’s health. We need to equip Canadians with the tools necessary to
balance both their health and economic needs.”
Other speakers were Karen Chow, Manager, Partnership & Philanthropy of GlaxoSmithKline, which
provided in kind support for the translation, artistic design and printing of the Report, and Janet
Dunbrack, author of the Report. They were accompanied by Jackie Manthorne, Chief Executive
Officer of CBCN as well as other CBCN staff, including Tiffany Glover, Public Relations and
Government Relations Manager.
The Hill launch was followed by a reception at the Chateau Laurier Hotel, attended by politicians
and other decision makers, representatives of many healthcare charities and several CBCN Board
members from across the country.
Among those who attended was Joy Smith, MP for Kildonan-St. Paul and Chair of the House of
Commons Standing Committee on Health. She brought greetings from of the Federal government,
and stressed the importance of this research. “This report provides invaluable leadership and
direction on the issue of breast cancer. It reveals the multiple burdens faced by women with a
breast cancer diagnosis,” stated Smith in her opening remarks. “CBCN plays an invaluable role
in breast cancer advocacy as it is the only national voice of breast cancer survivors. And no one
knows better than a survivor the financial hardship of this disease.”
CBCN president Cathy Ammendolea
and Breast Cancer: Economic Impact
and Labour Force Re-Entry research
report writer Janet Dunbrack address
the media at the report’s launch on
Parliament Hill on May 27, 2010
Photo: Tiffany Glover
NETWORKNEWS
SUMMER 2010 VOL 14, No 3
ISSN: 1481-0999 Circulation: 6,500
PUBLICATIONS MAIL AGREEMENT NO. 40028655
Return undeliverable canadian addresses to
CANADIAN BREAST CANCER NETWORK
331 COOPER ST, SUITE 300
OTTAWA ON K2P 0G5
E-mail: cbcn@cbcn.ca
Network News is published by the Canadian Breast
Cancer Network (CBCN) to provide the breast cancer
community with up-to-date and understandable
information on issues at the national level, to promote
education and awareness, and to highlight the concerns
of Canadians affected by breast cancer.
We would like to thank the individuals who wrote articles
and the breast and ovarian cancer support groups
that provided information. We welcome your ideas,
contributions and letters, subject to editing and available
space. The articles in this issue do not necessarily
represent the views of CBCN but are the opinions of the
authors. CBCN gives permission to copy with attribution.
Canadian Breast Cancer Network,
331 Cooper Street, Suite 300,
Ottawa, ON K2P 0G5. Tel.: (613) 230-3044.
1-800-685-8820. Fax: (613) 230-4424.
E-mail: cbcn@cbcn.ca. Website: www.cbcn.ca.
Editor: Jackie Manthorne
Editorial Committee: Jackie Manthorne, Mona Forrest
Contributors: Cathy Ammendolea; Jackie Manthorne;
Catherine Mooney; Cathy Sharette; Mary Keough;
Sharon Young; Mary Chaffey; Tiffany Glover; Marie-
Hélène Dubé; Dr. Ellen Warner; Dr. Stephen Chia; Lorna
Marshall; Claudette Goguen
Translation: Martin Dufresne; Francine Lanoix; Jeanne
Duhaime; Cornelia Schrecker; Hélène Classine
Cover Photo: Tiffany Glover
Photo Credits: Tiffany Glover; Judy Donovan Whitty;
Soesi Atlanti; Tina Picard
Staff: Jackie Manthorne, Chief Executive Officer,
jmanthorne@cbcn.ca; Mona Forrest, Deputy Chief
Executive Officer, mforrest@cbcn.ca; Jenn McNeil,
Operations Manager, jmcneil@cbcn.ca; Tiffany Glover,
Public Relations and Government Relations Manager,
tglover@cbcn.ca; Vanessa Sherry, Community
Engagement and Public Relations Coordinator, vsherry@
cbcn.ca; Stuart MacMillan, Online Engagement and
Information Manager, smacmillan@cbcn.ca; Maureen
Kelly, Receptionist, maureen@cbcn.ca; Judy Proulx,
Receptionist, jproulx@cbcn.ca; Sandie Lessard,
Bookkeeper, sandie@cbcn.ca
ON THE COVER:
Janet Dunbrack,
Breast Cancer:
Economic Impact
and Labour Force
Re-Entry report
writer, addresses the
media at the report’s
launch on Parliament
Hill on May 27, 2010
3

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
The economic impact of breast cancer
When people think about breast cancer, they picture surgery, treatment
side effects and the psychological impact of a devastating diagnosis. Very
few people think about the economic consequences that breast cancer can
create in the lives of survivors and their families. Unfortunately, at a time
when patients should be focusing on healing and regaining their health,
many women fi nd themselves struggling with fi nances and worried about
job security.
The economic impact of breast cancer is huge, and in many cases,
devastating for patients and for families. 80% of women and men
experience a fi nancial impact from the disease, often with long-term
fi nancial consequences. On average, patient households experienced
a 10% drop in annual income and 44% of respondents depleted their
savings and retirement funds, while 27% took on debt to cover treatment
costs. The average duration of treatment was 38 weeks, but because
Employment Insurance Sickness Benefi ts last for a maximum of 15
weeks, there was an average gap of 23 weeks during treatment without
EI coverage.
“15 weeks of EI for cancer care is a joke. It takes much longer than that. I ran
out of EI before I ever got to radiation treatment,” said one survey respondent.
Contrary to the commonly held belief, out-of-hospital expenses, including
many medications and prosthetics, are not covered by provincial or
territorial health plans. Moreover, there are large inconsistencies in health
coverage across different provinces and territories. This means that a
woman in one province will have certain drugs covered by her public health
plan, while a woman in another province will have to cover the cost herself.
These expenses pose an enormous burden on individuals diagnosed with
breast cancer and their families. Using savings and retirement funds
to cover treatment costs often means that families can no longer afford
higher education for their children, must cash in their savings, or are
forced into poverty. For women who do not have either employment-related
or private medical insurance to cover drug costs or do not qualify for
government assistance to replace lost income, the financial consequences
are even more severe.
“I am now 64 and have been laid off from my job. I am still trying to repay
the debts I acquired while going through treatments. My retirement savings
are all but gone. The stress of knowing I will have to work at least part
time for the rest of my life, regardless of how I feel, is overwhelming,” one
survivor reported.
The health and psychological impact of financial burden was significant, with
the most common experiences being stress and insomnia. One-third believe
that the financial impact of the disease will have long-term negative effects
on their health and many fear a recurrence of cancer because of stress
associated with financial burden.
Marsha Davidson, executive director of the Breast Cancer Society of Canada,
which funded CBCN’s Breast Cancer: Economic Impact and Labour Force
Re-Entry
research report, speaks at the report’s launch on Parliament Hill on
May 27, 2010 Photo: Tiffany Glover
“We are in debt so far that I do not sleep at night and am paralyzed by fear
that recurrence or metastases will make us bankrupt,” said one survivor.
Families and close relationships were affected by the economic impact
of breast cancer. Two-thirds of respondents reported a negative effect on
family members. The most frequent effects on families were loss of income,
taking on more work or taking time off from work to provide care, and having
to economize on children’s education and other needs. Some respondents
indicated marital strain.
“The financial burden became more stressful than the cancer itself,” wrote
one patient.
The impact of breast cancer on labour force re-entry
The report shows that breast cancer caused a significant disruption in labour
force participation. 73% of respondents had full or part-time jobs at the time
of their diagnosis. There was a 16% decline in the number with full-time jobs
after diagnosis, and 16% had their jobs terminated. One-fifth (21%) had
to quit their previous job due to the effects of treatment. The main reasons
for leaving a job were work-related restrictions, side effects of treatment or
fatigue / pain.
4

network news SUMMER 2010 Vol 14, No 3
“I was ‘let go’ because my boss was concerned I wouldn’t have the strength to perform duties and that
I might become ill on the job. He ‘was concerned for my health,’” a respondent remarked.
The number of self-employed respondents remained steady at 8%, but most suffered a loss of income
and had to start their businesses again from scratch.
Respondents had mixed experiences of returning to work. One-fifth returned to work before they were
ready because of financial pressure. Those who were able to make a gradual return to work were more
likely to report a positive experience. Some (19%) had rehabilitation and ergonomic adjustments to
their workplace to accommodate their new situation.
Those who did not have a gradual re-entry to work or adjustments in the workplace reported distress,
pain, fatigue, and, in some cases, having to leave their jobs. The attitudes of employers and co-workers
were important factors in the ease of re-entry.
Chemotherapy has an economic impact. Those who received chemotherapy had the greatest drop
in family income, took more time off work and were more likely to have to quit their jobs. “Chemo
brain” was identified as a challenge in returning to work. The family members of those who received
chemotherapy were more likely to have to take time off work to provide care.
Action for Change
Every year, approximately 23,000 Canadians are diagnosed with breast cancer. In light of the evidence
that the financial impact of breast cancer is significant and that much can be done to ease the
transition back into the workforce, CBCN has established a plan of action and is striking a task force
that will review labour policy, insurance benefits and workplace accommodation structures to better
reflect the reality of breast cancer treatment and subsequent labour force re-entry. To be considered
for the Task Force e-mail CBCN Deputy CEO Mona Forrest at mforrest@cbcn.ca . The Task Force will:
• Work with federal decision makers to improve eligibility criteria and length of Employment Insurance
Sickness Benefits
• Work with provincial and territorial governments to close gaps in breast cancer treatment coverage
• Engage with employers, unions and professional associations to create and share best practices to
facilitate successful re-entry
• Initiate dialogue with the insurance industry to address short and long-term disability and extended
health benefits standards
• Collaborate with other cancer, chronic disease, and women’s organizations and concerned
individuals to promote the necessary changes outlined in the report
A Note on Methodology
CBCN undertook this research to update an economic impact study done in 2004 and to deepen its
knowledge of work force re-entry. The research was conducted during the first six months of 2009 for
CBCN by Pollara and consisted of an online survey, a qualitative follow-up survey and a general public
opinion survey. Of the 446 people who participated in the online survey, 98% were women and 97%
were of usual working age (18-64) at the time of diagnosis.
With Niya Karpenko
Board of Directors
Cathy Ammendolea, President, Quebec
Alwyn Anderson, Alberta
Nina Burford, Labrador, Member-at-Large
Linda Dias, Greater Toronto Area (GTA)
Diana Ermel, Past President, Saskatchewan
Dianne Hartling, Treasurer, Ottawa-Gatineau
Suzanne LeBlanc, New Brunswick
Lorna Marshall, British Columbia
Meeka Mearns, Nunavut
Dianne Moore, Ontario
Janis Murray, Secretary, British Columbia
Pam Patten, Northwest Territories
Mercedes Sellars, Newfoundland
Judy Donovan Whitty, Prince Edward Island
Diane Spencer, Vice-President, Nova Scotia
Sharon Young, Manitoba
Subscribe to our e-letter,
Outreach!
Outreach is the Canadian Breast
Cancer Network’s free e-letter,
which contains action alerts, info
about our activities, programs
and projects. You can fi nd out
about opportunities to join panels,
do surveys, order reports, and
much more! It is only available
by e-mail. To subscribe, send an
e-mail to cbcn@cbcn.ca or call
Maureen at 1-800-685-8820 to
sign up.
5

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
Janet Dunbrack, Breast Cancer: Economic Impact and Labour Force Re-Entry
research report writer, Blair Lancaster, Breast Cancer Support Services
executive director, Lorna Marshall, CBCN Director for British Columbia, and survivor advocate Linda Glassier at CBCN’S May 26, 2010 Advocacy Workshop
Photo: Soesi Atantri
Breast Cancer Survivors Speak Out About
Financial Issues
When Breast Cancer: Economic Impact and Labour Force Re-Entry on Parliament Hill on
May 27, 2010, many women wrote, called and e-mailed us to tell us about their own personal
journeys through the breast cancer experience. With their permission, here are some of their
stories. Please note that the names in parenthesis are pseudonyms for individuals who prefer
not to have their names published.
To the Edge of the Cliff and
Back Again
By Catherine Mooney, Souris, PEI
I was diagnosed with breast cancer
when I was 38. My husband and I had
fi ve children, with the youngest being
fi ve years old at the time. I had a rare and very aggressive
form of breast cancer. Most people diagnosed with this type
of breast cancer had a less than two year life expectancy.
Because of this, I was eligible to receive disability benefi ts
from the Canada Pension Plan, although most women
diagnosed with breast cancer are not eligible to receive CPP
disability benefi ts.
Because of the aggressive nature of the disease, I had
to undergo very high doses of chemotherapy and other
debilitating treatments. I needed to travel to Charlottetown,
which is 60 miles away from my home town of Souris, for
several months of treatment. After the standard treatment I
had to go to Toronto for a stem cell transplant. I had to pay
most out-of-pocket expenses for travel and post-treatment
drugs. My fl ight came from Hope Air free of charge. My
husband was unable to come to be with me because we could
not afford the travel or child care.
I was forced to quit my job and was not able to return to
teaching, so my husband became the only income earner
for a family of seven. I was in the process of fi ling my life
insurance application when I was diagnosed, and was of
course no longer eligible to receive it.
My husband and I were young and had no signifi cant savings
or retirement savings plans. We had to take out a $12,000
line of credit. We had an amazing banker, and of his own
accord he was able to rewrite our mortgage and reduce
our payments. Many times, we came very close to losing
our home altogether. I often had to alter the course of my
treatment and simply had to go without certain post-treatment
prescription drugs due to the fi nancial burden.
6

network news SUMMER 2010 Vol 14, No 3
We couldn’t afford most of the anti-nausea drugs that would
have helped me cope with the side effects of chemotherapy.
The daily dose of the post chemo drugs cost the same
amount as my husband was making per day. The only antinausea
pill that I could benefi t from cost $25 each, and wore
off after four hours.
We had to choose between food on the table and drugs for
me. So I simply had to go without. I lost 38 pounds in a couple
of months. I was frequently hospitalized due to the severity
of my side-effects. Once I was in the hospital, I would get the
medicine free of charge through the IV to cope with sickness
and nausea. After I was sent home, I often had to go back to
the hospital as soon as the medication wore off and I could no
longer cope with the side-effects of such high doses of chemo.
My husband could not follow me to Toronto to be with me,
since we couldn’t afford it. And in the end, I had to forgo
follow up appointments in Toronto as I could not afford the
travel costs.
The daily dose of the post chemo drugs
cost the same amount as my husband was
making per day.
The loneliness of being away from my husband and children
(for the fi rst time) was as debilitating as the side effects of the
chemo. I remember a nurse telling me that in six years on
that unit, I was the fi rst person she had ever seen come to do
this treatment alone. She eventually became the fi rst person
to recognize that I was in emotional trouble, and about four
weeks in, she had me send for my husband immediately, an
expense we couldn’t afford.
My husband works for a family business and they allowed him
an incredible amount of fl exibility to come and go to take care
of me. He worked when he could and took care of me and the
children the rest of the time. The debts mounted steadily. He
had to take time off work to take me to treatment. We had to
leave our children with friends and neighbours as we could
not afford childcare. I don’t know where we would have been
without our community.
We live in a small town and the most amazing thing was how
our community embraced us and came together to help us
cope. They held two fundraising benefi ts for me that raised
about $7,000 each. One local restaurant supplied meals on
chemo days.
Sometimes my husband would come home and we would
have no money for supper that evening. Food would
miraculously show up from neighbors or an envelope in the
mailbox with $20 in it would take us through. Those envelopes
with money were literally our saving grace. I can’t thank
enough the people and the community of Souris for carrying
us through the darkest time for our family. We were able
to keep our home and sanity because of their generosity. I
couldn’t imagine what would have happened had we not had
the support of the community and family.
Living through Cancer
By “Mary Jones”
I work at a small hospital as a Cardiac
Technologist. I was diagnosed with
breast cancer in June 2006. When I
was diagnosed, my employer made me
take all of my sick time and holidays
before applying for Long Term Disability (LTD). This process
went reasonably well. I was off work from November 2007
until November 2008, when I returned to work and then
moved back into my regular rotation in February 2009.
When I was on LTD, my job was changed and I was laid off, so
I had a battle on my hands. I was right in the middle of chemo
when this happened, and it was one of the hardest things I
had to do. But I did manage to get my job back, so everything
turned out in my favour.
I was anxious to get back to work, so I called Long Term
Disability to get things moving. I had to attend a one-day
assessment to see how fi t I was. When I returned to my job,
I started off very slowly and found myself exhausted. At one
point I had to take a few extra days off to get my strength
back. It was amazing how exhausted I felt and how hard it was
to get myself back into the work force. The person who had
relieved me had taken a full time job in another hospital, so I
was forced to work full-time.
When I returned to work, it was diffi cult getting things
straightened out, as they either took too much money off my
pay cheque or disrupted my benefi t package. So it was very
frustrating for the fi rst couple of months until everything got
organized. I have an amazing extended medical plan, so my
drugs, wig and other item were covered, but for some people
they are not.
7

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
Being diagnosed with cancer can be and is a financial drain. I
live in a small community and when I needed radiation, I had
to move to the centre where it was offered. I managed to rent
an apartment, but I had to travel home every weekend on the
Greyhound Bus to see my family.
I realize that there is help out there, but sometimes you are just
trying to deal with what you have been handed and you don’t have
much strength to apply or find other means. If you live in a small
community, there is not much that is offered to you. But I had
wonderful support from my family and friends and especially from
my co-workers. It is a difficult process and treatment can be long,
but you need to stay focused, strong and most of all, positive.
Thank you for letting me tell my story.
The Impact of Treatment on My Life
By Cathy Sharette
I was diagnosed in December of 2007 following my first
mammogram that October. I had a lumpectomy in my right
breast in January 2008 and then given three types of chemo
over six sessions.
After my first chemo session, my breast became very inflamed and
fuchsia in colour. I was put on antibiotics for a possible infection.
Following the treatment, I ended up developing lymphedema
in my chest. The tissue was swollen and burning. It felt almost
“popcorny.” I had to get lymphedema massage treatments that
would help the swelling go down. Even after the lumpectomy, my
right breast was the same size from the swelling. I had to purchase
very tight sports bras to cope with the swelling.
I discovered a new lump in July 2008 and was diagnosed with a
recurrence and had another lumpectomy in September. While the
biopsy came back negative, it took me two and a half months to
heal due to the effects of radiation. Chemotherapy finished in July,
and I started an aggressive treatment of radiation in September that
lasted 14 days straight. In addition to that, I was put on breast cancer
medication following my treatment and was on it for one year.
I was fine through most of the chemo, and even during radiation I
only had minor burns. However, during my second cycle of cancer
medication, the side-effects began to show. I had severe muscle
pain in my outer thigh. I had excruciating pain when I tried to walk
fast. I couldn’t walk up and down the stairs. I have had to crawl
up the stairs several times because I couldn’t use my legs due to
pain. I literally had to carry myself up.
The pain was often incapacitating and I was referred to a pain
specialist. However, I decided not to go as there are often
additional side-effects associated with pain medication, such as
constipation. I simply take Ibuprofen twice a day and cope with
the pain. The pain is very jarring and ranges from being eight to
nine out of ten.
After finishing all treatments and cancer drugs, my symptoms
became less severe. However they still persist. I have also
developed back pain. I always walked one mile a day and
continued to do so. I had to do it very slowly, but did it anyway as I
thought it was helpful overall. I have recently started yoga as well.
Most of the time things are fine, but then I get a sharp, jarring jolt
that can throw me off balance. It is hard to say what adjustments I
have had to make. You get so used to living like this that it is hard
to imagine what it was like before. I still sometimes lose balance
when walking down the stairs. Even standing sometimes bothers
me. If I do any cooking, I have to do all the prep work sitting down.
I was warned that I would feel fatigue as a side-effect of radiation.
I felt waves of exhaustion. Out of nowhere too, I could be awake
for several hours and then would get just a sudden overwhelming
feeling of fatigue that would last from half-an-hour to an hour-anda-half.
Sometimes I just lie down and sleep. Sometimes I don’t and
the feeling simply goes away.
Something that is not talked enough about is the fogginess that
chemo causes. I know that I am 63 and am pre-menopausal and
with a lot of these medications, my estrogen is being suppressed.
This can have an effect as well.
After the second cycle of chemo, I developed the usual sideeffects
of severe nausea and dizziness. I also developed anxiety.
I have never experienced that before and the feeling was very
palpable during every treatment.
From One Breast Cancer Thriver to Others
By Mary Keough, St. John’s, NL
I recently received an e-mail about CBCN’s new research
report, Breast Cancer: Economic Impact and Labour Force Re-
Entry, emphasizing the financial impact on women having been
diagnosed with breast cancer.
This information certainly created a lot of emotions in me as I am
struggling with a financial burden on a daily basis. My diagnosis
on November 20, 2008 has impacted me beyond any words that I
can find to explain my situation appropriately.
On November 20, when I went for post-op follow-up from the
removal of what was thought was a cyst in my right breast, I was
advised that I had aggressive high-grade ductal carcinoma, grade
3. I was given six days to make a decision on treatment. Since that
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network news SUMMER 2010 Vol 14, No 3
time, I have had three surgeries, chemotherapy and radiation
plus a port-a-cath inserted and removed in my chest to
receive chemotherapy treatments. I am presently on an anticancer
drug, which is giving me a lot of side-effects.
In December 2009, I was diagnosed with an inactive
thyroid and was placed on a thyroid medication. I was
also advised that I had lost a lot of bone density and that
I had to start medication for that as well. I undergo a CAT
scan and a bone scan every six months, as both tests have
revealed some problems. Continual testing and waiting
for results is always stressful in itself. I suffer daily from
extreme tiredness and exhaustion.
Today, 18 months later, I am still struggling physically
as never before in my life and my financial situation has
impacted my ability to recover. Unfortunately, I did not
have long-term disability insurance through my employer,
which is the Government of Newfoundland and Labrador.
Once my sick leave expired, I had to apply for Employment
Insurance Sickness Benefits. This lasted just 15 weeks, and
my chemotherapy hadn’t even been completed by then. My
radiation was still to follow. Based on information received
from a social worker at the Cancer Clinic, I applied for
Canada Pension Disability and this is now my sole source of
income. I exist on less than $900 a month.
I had purchased a home in September 2008 and received
my diagnosis in November of that year. I soon realized that
I was unable to continue with my mortgage, as I had no
mortgage insurance either. I was forced to sell my house in
May 2009 at a significant personal and financial loss. This
effectively wiped out my life savings.
My friends had held a fundraiser for me in March 2009, but
these funds have long been used up. I stayed with a good
friend following the sale of my home, but soon felt I had
to find my own accommodations and I am now presently
renting. I thought that I would be able to manage this
successfully as I was intending to return to work, which I did
in September 2009.
Returning to work was against the advice of my doctor, but
I felt I had no choice as my financial situation dictated that
I must at least try, despite my lingering heath problems.
My return to work was initially for five afternoons a week;
however, I quickly realized that I was unable to keep that
commitment physically, and reduced it to three afternoons
a week. By November, this became too difficult and I was
forced to remain off work. The situation has not changed
since then.
I will add that in November 2009, I discovered another
lump in my breast and this led to further surgery that was
successful in determining that my cancer had not returned,
for which I am truly grateful.
I continue to struggle daily with the impact this financial
burden has placed on me and worry constantly that this will
eventually affect my health once again. It was suggested
to me at one point by one of my doctors that I apply for
social assistance. To a person who has always been very
independent and financially viable, those words made me
feel very low.
I was forced to sell my house at a
significant personal and financial loss.
This effectively wiped out my life savings.
I applied for medical retirement in December 2009;
however, my oncologist stated on the required forms that
I was “not disabled,” as he feels I am presently cancerfree.
My employer therefore placed everything on hold for
a six-month period until I have further testing completed.
In the meantime, I continue to suffer from extreme fatigue
and exhaustion as well as daily stress due to my financial
situation, which, in my opinion, prohibits me from even
thinking about returning to a very, very stressful work
environment.
I feel that my oncologist is far from understanding, and
whenever I have tried to explain my financial burden to him
and how I am feeling physically, he fails to involve himself
in this issue and indicates that his sole purpose is to treat
cancer and not problems which are a spin-off of the cancer.
My radiologist has shown more empathy, but his limited
efforts to help have not changed my overall situation.
I struggle to understand why, despite my continuous cry for
help from my health advisors, they are collectively unable to
assist me in my plight to have my employer recognize that
my health prevents me from successfully retuning to work
– this despite the fact that my normal retirement could take
effect in approximately four years.
The decision to put my feelings in writing has been very
difficult. I am usually a very private and independent person
who prides herself on her ability to look after her own affairs.
However, I feel that my doing so may be a way to help other
people in similar situations to know that they are not alone.
9

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
Photo: Soesi Atlantri
Gradual Return to Work Following a Breast
Cancer Diagnosis By Sharon Young, Member of CBCN’s Board of Directors for Manitoba
Today’s workplaces are changing as accommodations for people returning
to work following illness or injury are built into organizations that value
their employees and the contributions they make, not only to their place of
employment, but to society in general.
I was diagnosed with breast cancer 14 years ago and followed
a regime of chemotherapy CEF (cyclophosamide, epirubycin,
fl ourorcil) that lasted more than six months. During my
treatment, my oncologist had told me that I was one of those
unfortunate people who fell in the top 10% of side effects –
lucky me! Following chemotherapy, I was left with extreme
fatigue and concentration issues but needed to return to
work as sick benefi ts were lapsing. I had been very fortunate
through the course of this journey, as I had an understanding
and empathic workplace and had accumulated sick benefi ts
that I was able to use during my time off for treatment.
I thought I was ready to go back to work full-time, and actually
was not offered any alternative than full-time because that was
the position I held. On the outside, I looked ready to return
and in fact was eager to have my life return to normalcy and
to spend more of my waking time focusing on my work, which
I loved, and less time on me and my cancer. I was ready to
move into survivorship mode, but my body and mind were still
recovering from the intensity of the treatment.
I returned to work full-time in the fall of 1997, and looking
back, I remember very little about that period except that I
put one foot in front of the other and went to work every day. I
had literally started a walking program after my treatment had
ended earlier in the spring, and carried that on for the next
two years, rain or snow, sleet or shine, to build endurance and
to bolster my energy.
In the fall of 1998, I started to rally other breast cancer
survivors to form Waves of Hope, Western Manitoba’s Breast
Cancer Dragon Boat Team. I was starting to feel better and
wanted to give back to my community the support that it had
given to me. It took about two years after my treatment ended
to feel more like my old self again, and dragon boating also
assisted my recovery.
Today I continue to work full-time, although I changed roles
almost four years ago and became a frontline manager.
Through my current position, I have learned about my
workplace’s Return to Work policy that was developed in 2006
and have had the opportunity to apply the policy with people
who have been off work due to injury or illness. Working with
our Human Resources Department, every effort is made to
value the person and to tailor his or her return to work to the
individual’s unique circumstances.
Research shows that the longer a person
is off work, the less the chance that the
person will return to work. In fact, people
who are away two years or more stand a
90% chance higher of not returning at all.
For this reason, every effort is made to stay in contact with
the employee while they are away on an illness or injury leave.
Employees also have responsibility to communicate directly
with their managers and to update them about changes to
their health. On a plan for a gradual return, a set timeframe
of four to six weeks is outlined and subsequently reviewed
with the Human Resources Consultant and the Manager. If
needed, a Union Representative may be requested to attend
the meetings by the employee. As well, the Occupational
Health Nurse or the Employee Assistance Program may be
involved to support the person returning to work.
Helping a person return to work starts when they are fi rst
away from their employment, involves a respectful approach
with all due care and concern they rightfully deserve, and
involves structured processes. Return to Work policies that
offer fl exibility and assist the employee to reintegrate back
into the workplace at a manageable pace ensure a win-win
situation for both the employer and the employee.
10

network news SUMMER 2010 Vol 14, No 3
A Day on Parliament Hill- A Survivor
Advocate’s Story An Interview with Mary Chaffey, by Tiffany Glover
As part of the launch of CBCN’s report Breast Cancer: Economic Impact and
Labour Force Re-Entry, CBCN organized a Hill Day for our Board of Directors
and some of our Survivor Advocates. Thirteen women were involved in the
day of organized, face-to-face meetings with, Members of Parliament (MPs)
and Senators on Parliament Hill.
Photo: Soesi Atantri
To prepare for the Hill Day meetings, Directors and Survivor
Advocates attended an advocacy workshop on May 26 that
provided training and background information. The Hill Day
followed on May 27. Each of the Directors and Survivor Advocates
attended two or three meetings. Some of the women had met
with MPs before on various issues, while others had never before
engaged in any advocacy efforts.
To provide an insider’s perspective on the Hill Day experience,
I interviewed Mary Chaffey, a CBCN Survivor Advocate who
attended the workshop and was part of the Hill Day. Prior to
this event, Mary had not been formally involved with CBCN but
her name was recommended by others in the breast cancer
community in Newfoundland and Labrador. Mary reflected on why
she became involved and her experience during CBCN’s Hill Day.
Tell me a little about your background.
I was diagnosed with breast cancer in 2001 when I was 49 years
old. I had a lumpectomy followed by a mastectomy and chemo.
Why did you agree to come to Ottawa and take part in the Advocacy
workshop and Hill Day?
When I was asked to participate as a Survivor Advocate and take
part in Hill Day, I was in awe that someone thought I would have
the ability to do this. But when I stopped to think about it, I’ve
been doing advocacy work for the last nine years – I just didn’t
realize it. So I thought my goodness, this is a chance for me to
advocate for changes that could help Canadians who have been
diagnosed with breast cancer and have faced financial burdens
because of it. Studies, including the one released by CBCN, have
shown that the financial burden of cancer is often as stressful as
the disease and the financial impact was sometimes longer lasting
than the cancer.
What did you expect when you were first approached to meet with
MPs on the Hill as part of the Hill Day?
I really didn’t know what to expect. Coming from a small town,
you run into your MP in the grocery store on a regular basis but to
actually sit down in a formal meeting had me a bit apprehensive.
I realized that all you really need is to have a purpose and to
be passionate about your cause. My daughter Lori and my
granddaughter Reagan are my purpose and passion and I would
go to the ends of the earth for them. So the least I could do was
go to Parliament Hill.
How did you find the experience of meeting with MP’s and being on
the Hill?
I found the MPs to be very welcoming and open to our
suggestions. They made me feel at ease and comfortable, which
made it easier to plead our case. Many were aware of some of our
issues and concerns, they were very receptive to our plight, and I
felt they were impressed with our study which proves that breast
cancer is an economic as well as health issue. At the end of the
day I felt we had accomplished what we had set out to do and
had received some assurances that this issue would certainly be
looked into.
What did you learn from the process?
I learned that if you have a cause that strongly motivates you,
as breast cancer issues motivate me, you shouldn’t be afraid to
present it and talk about it to people in government and anyone
else that will listen. I also learned that Parliament Hill is not a big
scary place, and everyone I met made me feel like I was the most
important person in the room.
What was your favorite part of the day?
My favorite part of the day was that all three of the MPs that I
met with were each open to the suggestions and they each said
that they believed what I had to say was important. They all
committed to taking a serious look at the issues and the report
the CBCN had compiled.
What are you doing now that you’re home?
Now that I have returned home I will be meeting with my local MP
and MHA to tell them about the report and issues.
11

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
What advice, if any, would you give to other breast cancer
survivors who want to be active and get involved as a CBCN
Survivor Advocate?
I would advise other breast cancer survivors to talk, talk, talk to
anyone and everyone who will listen. We each have a different
story; we each have different experiences during our cancer
journey. There are many ways to be an advocate. I was an
advocate before I knew I was an advocate. I sold daffodils,
participated in Relay for Life, joined a support group, was
chairperson for our annual breast cancer retreat, took part in the
WOW snowmobile relay across Canada, and spoke at local service
groups and local cable station during October. There are many
things you can do to promote awareness.
To become a CBCN Survivor Advocate, contact CBCN at
cbcn@cbcn.ca.
From left to right: CBCN
Prince Edward Island Director
Judy Donovan Whitty; Survivor
Advocate from Newfoundland
and Labrador, Mary Chaffey;
Vice-President Diane Spencer,
from Bridgewater, NS,
visit Mike Savage, MP for
Dartmouth/Cole Harbour as
part of CBCN’s Hill Day on
May 27, 2010
Photo: Judy Donovan Whitty
Be a part of the 2011
World Conference on
Breast Cancer!
The World Conference on Breast Cancer brings together
hundreds of women from all over the world, of various
walks of life, cultures, religions and socio-economic
backgrounds to Canada to share their experiences
with breast cancer. The Conference is held every three
years, giving a large and diverse group of breast cancer
advocates, researchers, clinicians and survivors an
opportunity to meet, network and exchange ideas. The
World Conference on Breast Cancer Foundation hopes to
develop and implement breast cancer programs, services
and techniques that will assist in the global effort to
eradicate the threat of breast cancer to women wherever
they are located geographically.
The ethno-cultural diversity of Canada provides a fi tting
setting for these conferences. The rich diversity that exists
in Canada allows organizations, healthcare providers and
individuals attending the conference to learn and examine
techniques that can be used to educate women of various
backgrounds and determine the best course of action
needed to support them.
The next conference will take place in Hamilton, Ontario in
June 2011. For information on how you can participate in
the 2011 World Conference on Breast Cancer, please visit
www.wcbcf.ca .
Yes!
I want to support the Canadian Breast Cancer Network!
The voice and advocate for survivors!
As a Member
Annual Membership Fee:
$25 – individuals and organizations
As a Friend of the network
$100 or
Add my donation for $
Cheque enclosed VISA MasterCard Total Amount: $ ____________________________
CARD NUMBER: _______________________________________________ EXPIRY DATE _______________ SIGNATURE ____________________________
NAME: ________________________________________________________ ADDRESS __________________________________________________________
CITY __________________________________________________________ PROV ______________________ POSTAL CODE __________________________
TELEPHONE ____________________________________________________ EMAIL ______________________________________________________________
(Receive Outreach alerts and news by email)
12
CANADIAN BREAST CANCER NETWORK | 331 COOPER STREET, SUITE 300 OTTAWA ON K2P 0G5
Tel: (613) 230-3044 | Toll-Free: 1-800-685-8820 | Fax: (613) 230-4424 | Charitable registration 889802971RR0001 cbcn.ca

network news SUMMER 2010 Vol 14, No 3
Coping with Cancer: Employment Insurance Sickness
Benefi ts Petition By Marie-Hélène Dubé
At 7 AM on my 32nd birthday, I learned by telephone that I had thyroid cancer,
which had spread to my ganglia and was at an advanced stage. I had a
malignant tumour, and the cancer had spread. I needed emergency treatment
and major surgery, and I had young children at home. And yet nothing,
absolutely nothing, would have led me to suspect my diagnosis.
That was in January 2003. I hardly need to describe the
state of emergency my life was thrown into. I lived through
that period on adrenaline and at such a pace I can hardly
remember certain moments. I couldn’t believe it was
happening to me because I didn’t feel sick. And yet I was.
That year was hard on my body and my spirit. However, with
a great deal of effort, life returned to normal, or almost. I
thought I had conquered the monster.
In spite of all my efforts, the disease came back in August
2007. It was an extremely tough time. I felt betrayed by my
body and by life, and yet I summoned the same energy for
another fi ght, which was also very trying and unfortunately
effective for only a short period of time.
Barely one year later, in September 2008, the monster came
back again. The verdict was absolute and the situation critical.
I was overwhelmed by rage and sadness and the desire to
give up. I was exhausted. I constantly tried to put my life back
on the rails and to live it normally. I felt as though I was in a
game of snakes and ladders, without the ladders. I also lost
my job for the third time, further compounding the stress I
was experiencing.
And then came the last operation. The risks were great. I
could have died (30% risk) or been left disabled. Fortunately,
I made it through a six-hour operation with a controlled
hemorrhage and a number of neurological after-effects in my
right arm and neck that will probably disappear over time.
After that procedure, I thought I was out of the woods for
good. But I wasn’t. The post-op tests six months after the
procedure showed I still had cancer – a tumour wrapped
around my aorta. It was small, but it was there, troubling
and threatening.
As the tumour was in a precarious place, further surgery
was out of the question as the risks would have been too
great. The treatments that had previously produced mixed
results were also suspended for the time being. Since I
had previously received high doses of radiation, additional
treatment would have increased the long-term risk of
leukemia. At the moment I am being closely monitored every
three months, and fortunately, the tumour has not grown. As
long as it doesn’t change, no surgery will be attempted.
It goes without saying that this kind of condition is particularly
hard to live with. What made it even more diffi cult was the
fact that I had to struggle to protect my fi nancial situation at
the same time that I had to fi ght for my life. You don’t need
to be a scientist to understand that high stress doesn’t assist
in healing. When I found myself limited, for the third time, to
15 weeks of Employment Insurance Sickness Benefi ts under
section 12 of the Employment Insurance Act, I decided to get
involved in making a change to that obsolete provision. And
that is how my petition for an amendment to make it more
consistent with the reality of today was born.
It was then that I discovered that the sickness benefi ts
provision, introduced in 1971, had never been amended. I
can understand that this was a distinct advance in 1971. At
that time serious diseases were much less prevalent than they
are now, and the survival rate was unfortunately very low.
Fortunately, there has been extraordinary progress in
medicine. Every year new drugs and treatments emerge.
However, they take a very long time to work; a number of
studies have shown that it takes about a year to undergo
treatment and to signifi cantly recover from cancer. It is now
estimated that nearly 50% of people will be affected by cancer
during their lives. And that does not include all the other
serious and debilitating diseases that can affect you. What will
the situation be in a few years?
How is that, in Canada, in 2010, model citizens who have
contributed to employment insurance all their lives wind up
13

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
with only 15 weeks of sickness benefi ts (maximum $400/
week, taxable) when faced with this kind of trial? If they lost
their jobs as a result of a shortage of work or a plant closing,
or if they took parental leave, they would be entitled to up to
50 weeks of benefi ts.
It is not right that, in Canada, in 2010, you should have to
sell your house or remortgage it several times and maximize
your debt load in order to be able to pay for treatment. This
situation has major consequences for people who are sick
and also for those around them, their families and children.
Enabling these people to be cared for with dignity, without
losing everything, is the choice of a responsible nation. It is
a societal preference that will benefi t everyone and is the
winning option in human, social and economic terms.
More than 300,000 Canadians have signed my petition to
date. To continue increasing the government’s awareness of
the importance of amending these benefi ts, I invite you to join
with me and gather more signatures.
I thank life that I am surrounded by fantastic people. Illness
is a very hard trial, but it can also be an opportunity for
extraordinary personal growth. That’s my way of getting
through this.
I will leave you with these words: no matter what happens,
hang on to hope and never give up! Let’s combine our efforts
to achieve victory in this cause. Thank you once again.
My petition can be downloaded for printing at:
www.petitionassuranceemploi.com . Please note that detailed
instructions are appended.
Body, Mind, Spirit 2010:
National Conference for
Young Women Living with
Breast Cancer !
The Canadian Breast Cancer Network and co-presenter
the Canadian Breast Cancer Foundation are pleased to
announce that we will be hosting a 2nd conference for
young women living with breast cancer entitled Body, Mind,
Spirit 2010: National Conference for Young Women Living
with Breast Cancer in downtown Toronto on October 29-31,
2010.
This year’s conference will bring together young
women living with breast cancer, researchers, medical
professionals, support organizations and decision makers
from across Canada. Plenary sessions will cover the
topics of Healthy Living and Hope and Empowerment.
Over 35 workshops will give survivors the opportunity
to learn and share information on: intimacy & sexuality,
changing relationships, the latest research, complimentary
therapies, fi nances, healthy eating, healthy living, talking
to your children, personalized treatment, survivorship,
lymphedema, breast reconstruction, meditation, yoga,
celebrating life and many more.
There will be workshops with a special focus on women
living with metastatic breast cancer discussing the latest
research, survivorship, clinical trials and fi nances.
We’ve also added a special BRCA series for survivors and
previvors. This series will cover issues related to fertility,
management options and psychosocial issues.
CBCN is thrilled to welcome Canada’s queen of rock, Bif
Naked, as one of our key note speakers. Bif will share her
survivor story, “Rock Your Cancer,” as well as some of her
healthy lifestyle choices and what it means to be a raw food
vegan.
The fi rst CBCN National Conference for Young Women
Living with Breast Cancer was held in Toronto in November
2007 under the theme “Getting together to inform, support
and inspire.” It was attended by 326 young survivors
and provided young women living with breast cancer the
opportunity to learn and share with other breast cancer
survivors.
Don’t miss this opportunity to connect with other
survivors, share your story, learn about new research and
information, gain practical advice to apply to your life and
experience a weekend of empowerment and hope.
Registration for this conference will be opening soon via
the CBCN website at www.cbcn.ca . If you would like to
be added to the mailing list to receive updates on the
conference and notifi cation as soon as registration opens,
please email jmcneil@cbcn.ca .
14

network news SUMMER 2010 Vol 14, No 3
“ That’s not my
jurisdiction…” By Tiffany Glover
How often do we hear this phrase from our
Federal and Provincial elected politicians
when we address the important issue of
healthcare? In truth, there is a lot that your
elected representative can do regardless of
jurisdiction. The purpose of this article is to
provide some clarity as to the actual role and
responsibilities of the Federal and Provincial
/ Territorial governments in the delivery of
healthcare. The goal is that you, as a Survivor
Advocate, can use this information to better
target how you approach your elected
politician and hopefully help you to obtain
stronger support and better results from your
advocacy efforts.
Federal Government
The Federal government has an important role in the delivery
of healthcare. First and foremost, the Federal government
is responsible for setting and administering the five national
principles for the healthcare system as established by the
Canada Health Act: accessibility, portability, universality, public
administration and comprehensiveness. By adhering to these
principles, the provinces and territories qualify to receive federal
funding through the Canada Health Transfer to assist in the
financing of healthcare services. Also, the Federal government is
responsible for delivering healthcare services to certain population
groups (First Nations and Inuit peoples, for example), and it
provides other health-related functions, such as public health and
health protection programs and research.
Health Canada also conducts the first step in the approval of
medicines via the Common Drug Review. Only after Health
Canada has approved a medicine, or combination of medicines,
can the Provincial/Territorial governments assess the medicines
for their respective formularies.
The Federal government also has a role in the delivery of some
social assistance programs, such as Employment Insurance
Joy Smith, MP for Kildonan-St. Paul and Chair of the House of Commons
Standing Committee on Health and Jackie Manthorne, CBCN CEO, at
the Chateau Laurier reception for Breast Cancer: Economic Impact and
Labour Force Re-Entry research report, May 27, 2010
Photo: Soesi Atantri
Sickness Benefits and Compassionate Care leave. It is worth
noting that to advocate for changes to these programs, you must
talk with your MP.
Provincial and Territorial Governments
The Provincial/Territorial governments are responsible for
the delivery of primary healthcare services to their respective
populations. They are required to administer and deliver all
health care services as guided by the provisions of the Canada
Health Act. Each province / territory offers some measure of
supplementary health benefits not covered by the Act, such as
prescription drug coverage. The level and scope of coverage for
supplementary benefits varies between jurisdictions.
The Provincial / Territorial governments are also responsible for
approving drugs to be put on the formulary in their respective
jurisdictions. As each province can determine its own practices for
the delivery of health in its jurisdiction, coverage for prescription
drugs, the availability of prescription drugs and which services are
covered by the provincial / territorial plans is inconsistent across
the country.
15

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
This complexity feeds into some common points of confusion
that many Canadians have about the healthcare system. As
noted in CBCN’s new report, Breast Cancer: Economic Impact
and Labour Force Re-Entry, many respondents indicated that
they had believed their provincial health insurance would cover
many of their expenses only to discover that direct costs for
things like bandages, wigs and prostheses were ineligible for
reimbursement. Another common misperception is that there
is equal access to medicines regardless of where you live. The
reality is that each province can approve and list those drugs it
feels will best serve its population, with the result that there are
some medicines that are available and covered by the programs
in some provinces, but not in others.
As an example, the provinces of Prince Edward Island and
New Brunswick are the only two jurisdictions in Canada that do
not offer some form of universal coverage plan for medicines. 1
Another example is the new Gene Assay test which can help
determine whether a woman’s breast cancer will spread.
Ontario is currently the only jurisdiction in Canada that makes
this test available.
What does all this mean for you as a
Survivor Advocate?
This breakdown of responsibilities can help you to target your
message when you meet with your Federal and Provincial /
Territorial representatives. The Federal Government has a key
leadership role in the delivery of healthcare. It is the responsibility
of the Federal government to uphold the principles of the Canada
Health Act so that it is universal, accessible, portable, publicly
administered and comprehensive.
Provincial / Territorial governments need to be made aware of
the inequities in their policies and the survivor voice needs to be
heard as governments are making decisions based on how to
contain costs rather than what is best for patients.
As a Survivor Advocate, you can make your elected
representatives aware that Ontario funds the Gene Assay test, and
that the other provinces / territories should make it available too.
Or, when New Brunswick has its provincial election in September
2010, you can make sure that all of the candidates in the election
are aware of the cost of drugs to help treat your cancer and ask
about catastrophic drug coverage.
CBCN’s Breast Cancer Wait Times in Canada 2008 Report
Card provides a lot of information about some of the differences
in delivery of health care across the country. You can use the
information contained in the report card and the new report on
the financial impact of breast cancer to demonstrate to elected
representatives why they need to take action to show leadership
and address inequalities.
References
Health Canada website http://www.hc-sc.gc.ca/hcs-sss/
index-eng.php
The Canadian Breast Cancer Network Breast Cancer Wait Times
in Canada 2008 Report Card – www.cbcn.ca
1 The Daily Gleaner “Liberals’ drug plan promise fails to impress cancer patient”
June 16, 2010
Step by Step: Gaining Momentum to Extend
Employment Insurance Sickness Benefits
By Tiffany Glover
The Canadian Breast Cancer Network’s new research report,
Breast Cancer: Economic Impact and Labour Force Re-Entry,
firmly positioned breast cancer as an economic as well as a health
issue. A key aspect of the financial impact of a breast cancer
diagnosis is that EI sickness benefits do not last long enough to
carry a patient through treatment. The average length of treatment
for respondents was 38 weeks where as EI sickness benefits only
last for a maximum of 15 weeks. Most respondents experienced
the greatest financial impact from when EI sickness benefits
expired and when they were able to return to work.
Shortly after the successful May 2010 launch of the report, CBCN
was approached by Fin Donnelly, Member of Parliament for New
Westminister-Coquitlam, to support his Private Member’s Bill
C-525. His Bill seeks to extend EI sickness benefits to a maximum
of 52 weeks. Seeing an opportunity to move the issue forward,
CBCN lent its support. On June 2, CBCN Treasurer Dianne
Hartling joined Mr. Donnelly, Mr. Yvon Godin, MP for Acadie-
Bathurst and Mme. Marie-Hélène Dubé at a press conference to
announce the Bill.
“We heard from many women and men who said that 15 weeks
for cancer treatment is simply too short. Many didn’t even get
through their chemotherapy and radiation sessions during that
time,” said Dianne Hartling. “We support all women and men who
are ready to go back to work by promoting policies and strategies
that help balance both health and economic needs.”
Supporting Mr. Donnelly’s private member’s bill is one more
step in the process of advocating for change to EI sickness
benefits. The next step that CBCN will take is to include this
issue as part of the discussion at a task force that will be struck
in the fall of 2010. The task force will look at how to implement
the recommendations in Breast Cancer: Economic Impact and
Labour Force Re-Entry.
16

network news SUMMER 2010 Vol 14, No 3
You Do Have Choices: Breast Screening for Women with
BRCA1 or BRCA2 Mutations By Dr. Ellen Warner
Knowledge is not just power; it can also save lives. Since testing for BRCA1
and BRCA2 mutations became available in the mid-1990s, women with a
strong family history of breast cancer and/or ovarian cancer have been able to
determine their own cancer risk by undergoing genetic testing. Women who
do not have a mutation (in a family with a known mutation) are able to rejoice
in learning that their risk of cancer is markedly lower than they feared. On the
other hand, women who carry a mutation are able to take appropriate action. The result is that
countless deaths from breast cancer and ovarian cancer have been prevented.
Nevertheless, many women who are eligible for genetic
testing never take advantage of this opportunity. Probably the
commonest reason I’ve heard is, “I’m only 30 and single. I’m
not ready to remove my breasts and ovaries. So what good
is having the test?” What such women need to understand
is that they need not rush to have their ovaries removed
because ovarian cancer is not a major concern for another 10
years (and even longer for women with a BRCA2 mutation,
which rarely causes ovarian cancer before age 50). But more
importantly, they need to know that breast screening with MRI
plus mammography is a perfectly reasonable alternative to
surgical removal of the breasts. In fact, only 25% of Canadian
women with BRCA mutations choose to have prophylactic
mastectomies. The rest opt for screening.
What are the best tests for screening women
with BRCA mutations for breast cancer?
At Sunnybrook Health Sciences Centre, our interest in fi nding
a more effective breast screening regimen for women with
BRCA mutations arose shortly after we began genetic testing
for BRCA1 and BRCA2 mutations. We wanted to be able to
reassure women who did not wish to undergo prophylactic
mastectomies that if they did develop breast cancer we’d be
able to fi nd it at an early enough stage that it would almost
certainly be curable. Ideally we wanted to fi nd these cancers
at the stage of ‘ductal carcinoma in situ’ (DCIS) when the cure
rate is almost 100% or, at the very least, fi nd invasive cancers
before they were larger than 1cm in size and before they had
spread to any lymph nodes.
But at that time all we had to offer these women was
screening mammography, clinical breast examination and
breast self-examination. Since it was well known that physical
examination of the breasts by either a health care professional
or by a woman herself rarely detected cancers less than 1cm
in size and hardly ever detected DCIS, we were relying on
mammography to do the job. Mammography works very well
in women over 50, but most of these women were in their
30s and 40s. Since younger women have breasts composed
mainly of fi brous and glandular tissue rather than fat i.e.
dense breasts (the reverse is true in older women), which
greatly limits the ability of mammography to fi nd cancers, we
needed to fi nd another way to image breasts that would be
effective in women with dense breasts. The most promising
candidate was breast magnetic resonance imaging (MRI).
MRI has two advantages over mammography. One is that
the intravenously injected contrast agent concentrates in the
abnormal blood vessels of tumours and makes them light up
as a white object against a darker background. The second
advantage of MRI is that with MRI, instead of trying to see
a small tumour through the thickness of a whole breast that
has been squashed fl at as in mammography, the radiologist
can look at virtual thin slices of the breast in which tumours
are no longer hidden. (And if you understood this to mean
that breasts aren’t squashed fl at to do an MRI then you’re
absolutely right!) Also, MRI works with magnetic energy rather
than x-rays, so women don’t have to worry about getting any
additional radiation.
MRI is not a perfect test. It is much more likely than
mammography to lead to a “false positive,” which means that
it fi nds something in the breast that looks possibly suspicious
17

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
for cancer but turns out to be completely benign. In fact, this
happens to about 25% of women the first time they have a
breast MRI scan. Usually these findings are investigated with
an ultrasound and often there is simply a recommendation to
do an MRI again after three to six months to make sure that
the “finding” hasn’t grown. But sometimes the radiologist will
recommend a needle biopsy to rule out cancer. The good
news is that on subsequent screening MRI scans, if the same
“suspicious” finding is unchanged, it can just be ignored so
the false positive rate on subsequent scans is lower. Another
disadvantage of MRI is that it can be tricky to schedule it for
women who have irregular periods, because to get the best
results, breast MRI should be done in the second week of the
menstrual cycle (with the first day of one’s period counted as
Day 1). Since MRI involves lying face down on a table, some
women get claustrophobic and a few even need a pill to help
them relax.
But MRI is well worth these extra efforts (and cost, which is
more than 10 times that of mammography). In a combined
analysis of 11 published studies of very high risk women
(known or likely to have BRCA mutations) screened with
MRI plus mammography, the combination of annual MRI
plus mammography detected over 90% of breast cancers
compared to only about 35% that would have been found
if mammography alone were performed. More importantly,
the great majority of cancers found by screening in the
studies were either DCIS or stage I invasive cancers (2 cm
or smaller in maximum diameter and have not yet spread
to lymph nodes). In very experienced centres such as ours,
the results are even better. Since mammography detected
several cancers missed by MRI in most of the studies, the
combination of the two is currently felt to be the ideal way to
screen very high risk women for breast cancer.
The combination of MRI and mammography is so good
at detecting early breast cancers that adding any other
types of screening can’t really improve the situation.
Screening ultrasound added to mammography is better than
mammography alone, particularly in women with dense
breasts, but it very rarely will pick up a cancer that MRI
has missed. Screening ultrasound also results in a lot of
“false positives,” so there is no role for it in women getting
screened with MRI plus mammography. For the occasional
woman who has medical or psychological reasons that
prevent her from being screened with MRI, ultrasound
should be added to mammography. (Note that all this
applies to screening ultrasound. Diagnostic ultrasound is
very helpful to the radiologist in determining whether an MRI
or mammography finding is cancer or not.) Some experts
recommend that women being screened with MRI and
mammography have a clinical breast examination performed
by a health care professional every six months. Many women
find these examinations reassuring, particularly since they
keep the women connected to their health care team. But,
as with screening ultrasound, finding a cancer missed by
MRI would be a very rare event. There is no evidence that
monthly breast self-examination is of any value, but for
the women who finds it reassuring, there is certainly no
harm done. Otherwise, as for all women, breast awareness
(knowing how one’s breasts usually feel at different stages of
the menstrual cycle) is important.
At what age should screening start and end for
women with a BRCA mutation? How often should
it be done?
It isn’t clear exactly at what age women with BRCA mutations
should start screening with MRI and mammography. Most
experts suggest age 30. However, in rare families in which
women have developed breast cancer in their 20s, it might
make sense to start screening at age 25. Screening once per
year is sufficient but there are different opinions as to whether
it is better to do mammography and MRI at the same time
or to stagger them so that one screening exam is performed
every six months. Although the greatest benefit of MRI may
be in younger women, women over 50 with BRCA mutations
also benefit, at least until age 60. At our centre women whose
breasts are anything but completely fatty continue MRI
screening until age 70. After that, mammography alone is
perfectly adequate.
When a woman who has been getting regular breast screening
gets pregnant, mammography and MRI must be temporarily
discontinued. I recommend clinical breast examination
by someone in the high risk clinic or by her obstetrician
every three months, with an ultrasound done immediately if
anything suspicious is found. MRI and mammography can be
resumed three to six months after she discontinues breastfeeding.
The aim should be to have less than a two-year gap
between MRI examinations.
18

network news SUMMER 2010 Vol 14, No 3
This was the first MRI scan of a 50 year old women recently found to have a BRCA1 mutation. Her mammogram was completely normal. In the picture on the
left is a small very bright area (filled with the contrast agent) in the lower half of the left breast. The picture on the right shows that a few minutes later much of
the contrast agent has ‘washed out’ of the centre of the lesion leaving a ‘ring’ of enhancement. This is the classical MRI picture of an invasive breast cancer.
The 5mm ‘triple negative’ tumour was removed with a lumpectomy. A sentinel node biopsy showed no spread to underarm lymph nodes. She had a trial of
chemotherapy but didn’t tolerate it so only received radiation to the breast. She has been disease free for 11 years and still has both breasts.
Is breast screening all I need to do if I have a
BRCA mutation?
Finding breast cancer at a very early stage is excellent but it’s
even better to prevent that cancer. That’s why women with
BRCA mutations who have defi nitely completed their families
and are at least 35 years old should consider having their
ovaries removed as soon as they are comfortable with this
decision. This is important both to reduce breast cancer risk
and to eliminate the risk of ovarian cancer for which, unlike
breast cancer, there is no effective screening. So far there
is no evidence that women who take hormone replacement
therapy (HRT) up to age 50 after their ovaries are removed
have any increase in breast cancer risk compared to women
who choose not to take hormone replacement. (This topic was
very thoroughly discussed in the last issue of Network News).
Taking Tamoxifen or Taloxifene as chemoprevention for fi ve
years can also reduce breast cancer risk, at least for women
with BRCA2 mutations.
If I am diagnosed with breast cancer during
screening will I need to have a mastectomy?
Just as for women who don’t have BRCA mutations, women
with a small breast cancer diagnosed during screening can
choose between breast conservation (lumpectomy plus
radiation) or mastectomy. In our study, approximately 50%
of women diagnosed with breast cancer opted for breast
conservation. From other studies we know that at least for
the fi rst fi ve to 10 years after diagnosis, the risk of recurrence
in the breast is no higher than for women without mutations.
Women who do choose mastectomy should strongly consider
removing the other breast as well, particularly if they have
completed their families or have no interest in breast-feeding,
since the cosmetic result is often better when both breasts are
reconstructed at the same time.
Is genetic testing necessary for a woman to get
breast screening with MRI?
Some women whose parent on sibling has a BRCA mutation
do not yet feel psychologically ready for genetic testing. For
these women breast screening with MRI and mammography
is an excellent option. Once they are ready for genetic testing,
these women can safely discontinue MRI screening if they
have not inherited the family mutation. If they do have the
mutation, they can then decide between ongoing screening
and mastectomy.
Screening with MRI plus mammography is also appropriate
for women who have a very strong family history of breast
cancer but no BRCA mutation can be found in the family, if
their estimated lifetime risk of developing breast cancer is at
least 25%. Breast screening with MRI is not appropriate for
lower risk women because of its very high cost and high false
positive rate.
19

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
How do I choose between breast screening and
prophylactic mastectomy?
For many women with BRCA mutations, this is not a diffi cult
choice. Some women are appalled at the idea of undergoing
“mutilating” surgery to remove perfectly healthy parts of their
body. They are delighted that breast screening is an option
and are not bothered by the false positives or by the very small
chance that screening might not pick up a cancer before
it has become incurable. On the other hand, some women
have watched loved ones die of breast cancer or undergo
debilitating cancer treatments, and think that the decision to
undergo prophylactic mastectomy is a “no-brainer.” For some
of the women in this latter group, however, the opportunity to
delay surgery and have breast screening for a few years until
they meet a supportive partner, breast-feed their last child,
become more established in a new job, or simply reach a
“milestone” birthday, is extraordinarily welcome.
There are some women, however, who remain undecided
and carry a chronic burden of breast cancer related anxiety.
They may become particularly anxious if a false positive
screening test occurs. It is important that all women with a
BRCA mutation (or strong family history) undergoing breast
screening have an appointment at least once per year with
a health care professional with expertise in cancer genetics
to discuss issues such as ovarian surgery, chemoprevention,
and any new relevant research results. For the “undecided”
woman, this is an excellent opportunity to review her decision
in light of any changes in her personal or family situation and
any new medical developments.
Dr. Ellen Warner is a medical oncologist at Sunnybrook Health Sciences
Centre and a Professor of Medicine at the University of Toronto. Her
clinical practice and research are devoted entirely to women with a
diagnosis of breast cancer or at high risk of developing the disease. She
was principal investigator of a study of 500 women with BRCA mutations
which demonstrated the superiority of breast MRI over other modalities
for screening these women.
Dr. Warner is the director of PYNK, a unique program for women age 40
or younger newly diagnosed with breast cancer. PYNK provides continuity
of care from the time of diagnosis through treatment and long-term
follow-up, peer support, and the opportunity to participate in numerous
research studies.
CBCN Website Has a
Fresh, New Look!
The CBCN website – www.cbcn.ca – has been revamped
to better fi t your needs. The redesign offers a more userfriendly
online experience for those affected by breast
cancer. As the source for breast cancer-related information,
the website is a clearinghouse of resources on a wide
range of topics: advocacy; breast health; metastatic breast
cancer; rural women; young women; research & clinical
trials; newly diagnosed; survivorship; family & friends.
The website also serves as the home for news about
the latest initiatives at CBCN and in the breast cancer
community across the country. The popular bulletin board
section from the last website continues to feature events,
Webinars and information relevant to those affected by
breast cancer. You’ll also fi nd CBCN publications, such as
Network News and our recently published Breast Cancer:
Economic Impact and Labour Force Re-Entry.
The website will continue to grow over time as new
resources and information are added. If you have any
suggestions for resources, events or information that would
be of interest to breast cancer survivors, contact us at
cbcn@cbcn.ca .
100,000 bookmarks are being distributed to promote the
new website. To order your free supply to distribute to your
friends and community, e-mail Maureen@cbcn.ca or call
Maureen at 1-800-685-8820.
Make sure to check the website regularly to see what’s new
and what’s coming up!
20

network news SUMMER 2010 Vol 14, No 3
Preventing Recurrence Saves Lives
Practical Tips to Help Minimize the Risk of
Breast Cancer Recurrence By Dr. Stephen Chia
As there are more people living with cancer than ever before, recurrence has
become an increasingly important issue. For post-menopausal women with early breast cancer,
the greatest risk of recurrence is one to two years after surgery. However, what many women
don’t realize is that the risk of recurrence can last beyond 10 years, and all patients are at risk,
regardless of prognostic factors at diagnosis.
According to a survey of CBCN members, eight in 10 women
say the risk of breast cancer recurring is their biggest concern.
To help women better understand the risk of recurrence and
approaches to minimize this risk, the CBCN recently hosted
a Webinar, featuring Dr. Stephen Chia, Assistant Professor of
Medicine, Department of Medicine at the University of British
Columbia, and a staff oncologist with the British Columbia
Cancer Agency (BCCA). Dr. Chia provided the following tips
and advice to help women understand how they can help
minimize their risk.
Healthy Lifestyle
Lifestyle changes can help reduce your risk of cancer and
other diseases, and healthy habits are suggested for all
women, not just those with a diagnosis of breast cancer.
These include: limiting alcohol to no more than one drink per
day, avoiding smoking, exercising and maintaining a low-fat
diet and healthy weight.
Adherence to Medication
While most women surveyed believe that exercise and
diet can help reduce their risk, less than half (45%) noted
adherence to therapy as something they do to reduce their
risk of breast cancer returning. In fact, one in four admitted
to not always taking their medication as prescribed. The
most common reason cited for not following a physician’s
instructions for taking medication is forgetting to take it.
Dr. Chia’s own research through the British Columbia Cancer
Agency supports these survey fi ndings. He conducted a study
of 2,403 post-menopausal women (and/or over age 50) who
were newly diagnosed with stage I-III HR+ breast cancer to
determine how many adhered to their adjuvant hormonal
therapies in treating breast cancer. Results demonstrated
that an alarming 39.6% of women did not adhere to their
treatment within the fi rst year.
“Adhering to treatment is absolutely essential to preventing
recurrence,” says Dr. Chia. “It is troubling that many women
are not taking their medications as prescribed on a regular
basis. Stopping early can decrease the effectiveness of the
drug which can negatively affect long term health.”
Being non-adherent can not only lead to altered outcomes,
it can also increase physician visits, higher hospitalization
rates, and longer hospital stays. There are treatment options
available that can signifi cantly reduce the risk of the cancer
returning, even after therapy is completed, which is even
more reason to take medication as prescribed.
On Wednesday, May 26, 2010, Dr. Stephen Chia hosted a
live Webcast and provided key insights into recurrence; how
to manage risk, the importance of treatment adherence, and
how to manage common side-effects.
This Webinar is still available on demand viewing at the link
below. Don’t miss your chance to hear his important talk.
http://event.onlineseminarsolutions.com/r.htm?e=213172&s=
1&k=D452E4676DD2D1D561C800964231F00B
21

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
Tips to Adherence
Manage Side Effects:
• Remembering to take medication
• Ask your doctor to put your medication plan in writing
• Always take your medication at the same time
• Remind yourself – with a watch, or other alarm
devices you have at home
• Communication is Key:
• Discuss any challenges with your physician
• Don’t be afraid to ask questions: Have open,
honest two-way communication with your
healthcare professional
So remember, in addition to lifestyle factors simply taking
your medication as prescribed can help reduce your risk,
so be sure to speak to your doctor.
• Hot fl ashes: Keep records of your hot fl ashes: when,
what you were eating, doing and feeling.
• Joint symptoms: Use OTC medications like aspirin,
acetaminophen, or ibuprofen, as recommended by
your doctor. Recent studies have shown a correlation
between joint pain during the fi rst three months of
treatment and a benefi cial response to treatment.
• Nausea and vomiting: Stay hydrated by taking steady,
small amounts of clear liquids, and eat small amounts
of bland food until you know what can be tolerated.
• Weakness and fatigue: Pace yourself according to your
energy level. Don’t be afraid to reschedule activities,
and make sure you know your limits.
The Webinar was made possible by AstraZeneca Canada Inc.
Dr. Stephen Chia, M.D., F.R.C.P, is an Assistant Professor of Medicine at the UBC Department of Medicine, as well as a staff oncologist with the British
Columbia Cancer Agency (BCCA). Dr. Chia also serves as physician coordinator for both the breast cancer, and head and neck cancer clinical trials at the
BCCA Vancouver Cancer Centre. As an active researcher, he is involved in phase I-III trials in breast cancer, head and neck cancer and investigational new
drugs. An active researcher, Dr. Chia’s breast cancer research has been widely published in international peer-reviewed journals including New England
Journal of Medicine, Journal of Clinical Oncology, Lancet, British Journal of Cancer, and Clinical Cancer Research.
Richard Robinson Student
Showcase Dedicated to
Breast Cancer
Renowned Ottawa fashion designer Richard Robinson
dedicated his Grande Première 2010 to the cause of breast
cancer, the disease which claimed the life of many of his
clients as well as his beloved mother-in-law. CBCN was
there for the spectacular show to enjoy a night of fashion
while raising awareness for breast cancer. The show opened
with a preview of Robinson’s 2010 collection, a fl urry of soft
pink silk chiffon and organza – the color which has come
to represent breast cancer. Robinson’s senior model Kadija
Brown led the show, modeling the sexy cocktail dress that
was generously donated to the CBCN’s 2009 auction.
Robinson showed 15 beautiful evening gowns in total, all
showcasing different styles and fabrics.
La Grande Première is an
exceptional opportunity for
Robinson’s students to showcase
their unique creations. The show
featured a panel of celebrity
judges who awarded honors to
the most beautiful and “avantgarde”
of the collections. The
grand prize winner was designer
Geneviève Couture, whose
extraordinary wedding dress
collection demonstrated both
creativity and skill. At a pause
in the show, Robinson appeared
with CBCN’s president Cathy
Ammendolea who presented him
with a commemorative thank you
album for all his generosity towards CBCN.
Famous
fashion designer Richard
Robinson’s senior model
Kadija Brown modeling the
sexy cocktail dress that was
generously donated to CBCN’s
2009 auction
Photo: Tina Picard
22

Photo: Soesi Atantri
network news SUMMER 2010 Vol 14, No 3
CBCN Director Lorna Marshall Participates
in Scientifi c Peer Review of Breast Cancer
Research Proposals for the US Department of
Defense By Lorna Marshall British Columbia member of CBCN’s Board of Directors
Breast cancer advocate Lorna Marshall recently participated in the evaluation of research
proposals submitted to the Breast Cancer Research Program (BCRP) sponsored by the United
States Department of Defense. Lorna was nominated for participation in the program by the
Canadian Breast Cancer Network. As a consumer reviewer, she was a full voting member,
along with prominent scientists, at meetings to determine how the $150 million appropriated
by Congress for Fiscal Year 2010 (FY10) will be spent on future breast cancer research.
Consumer reviewers are asked to represent the collective view
of breast cancer survivors and patients, family members, and
persons at risk for the disease, when they prepare comments
on the impact of the research on issues such as disease
prevention, screening, diagnosis, treatment, and quality of life
after treatment. Lorna was one of more than 190 consumer
advocates who participated in the May, June, and July 2010
peer review meetings. She provided comments and scores for
research proposals. Commenting on her role as a consumer
reviewer, Lorna said that “it was one of the best experiences of
my life. The consumer reviewers were so welcomed and were
encouraged to be an active member of the panel.”
Consumer advocates and scientists have worked together
in this unique partnership to evaluate the scientifi c merit of
breast cancer research proposals since 1995. To date, more
than 700 consumer reviewers have served on breast cancer
panels alongside scientists in the review process. Captain E.
Melissa Kaime, M.D., Director of the Congressionally Directed
Medical Research Programs, expressed her appreciation
for the consumer advocates’ perspective in the scientifi c
review sessions. “The Consumer Reviewers on each panel
helped the scientists understand the patient’s perspective
and provided valuable insight into the potential impact of
the proposed project. Likewise, these important members of
the peer review panels have been enriched by learning more
about the scientifi c process through discussing proposals with
the other peer review panel members and seeing the future
possibilities of successful research outcomes.”
More than 2,800 breast cancer research proposals were
reviewed for 2010 fi scal year funds. Scientists applying
propose to conduct innovative breast cancer research aimed
at the elimination of breast cancer. Proposals are solicited
across all disciplines, including basic, clinical, social, and
psychosocial sciences, as well as public health, economics,
quality of life, alternative therapies, occupational health,
nursing research, and environmental concerns.
More information about the Department of Defense Breast
Cancer Research Program is available at the Website: http://
cdmrp.army.mil .
Would you like to be a consumer reviewer and
help evaluate research proposals?
The Canadian Breast Cancer Network has been nominating
breast cancer survivors to peer review committees for over
a decade. These survivors undergo Project LEAD training,
which is the National Breast Cancer Coalition Fund’s premier
science training course for activists. Project LEAD prepares
graduates to engage in the wide range of local and national
forums where breast cancer decisions are made. Project
LEAD graduates bring an educated consumer perspective and
critical thinking skills to the important issues and controversies
in breast cancer.
23

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
The National Breast Cancer Coalition gives several Project
LEAD courses:
• The Project LEAD Institute is a five-day science course on
cancer biology, genetics, epidemiology, research design,
and advocacy
• Quality Care Project LEAD is a four-day course on how
to improve the quality of breast cancer care through
systems change
• Clinical Trials Project LEAD is a four-day advanced course on
understanding and improving the clinical trials process
The Canadian Breast Cancer Network has sponsored over
20 breast cancer survivors to take Project LEAD. Over the
years, graduates have been participated in peer review
panels at the Canadian Cancer Society Cancer Research
Institute (formerly National Cancer Institute of Canada) and
the United States Department of Defense Breast Cancer
Research Project (BCRP).
If you would like to be nominated to attend Project LEAD,
leading to becoming a consumer advocate on research
peer review committees, please contact Jenn McNeil at
jmcneil@cbcn.ca .
Intimacy and Sexuality
Workshop for Young
Survivors Now Available!
CBCN has completed a one-day intimacy and sexuality
workshop in collaboration with Dr. Sally Kydd, co-author
of Intimacy after Cancer: A Woman’s Guide. A printed
facilitator’s manual and a CD containing the PowerPoint
presentation are now available in English and French
to organizations across Canada. Due to the nature of
the material, workshops must be facilitated by qualified
professionals.
Workshops must be offered free of charge. Please send
expressions of interest to CBCN operations manager Jenn
McNeil at jmcneil@cbcn.ca . We will then send you an
application form which must be completed and returned.
CBCN’s Fifth Annual
National Auction for
National Action
All kinds of gifts to help you with your Christmas shopping
blues will be up for grabs at CBCN’s fifth annual Breast
Cancer Awareness Online Auction, to be held October 1st to
31st 2010.
Star items this year have been flooding in, including
fashionable designer items! Auction bidders will have
exclusive access to exclusive items from designer Betsey
Johnson, and STORM Watches of London. You can preview
both of these designers at www.betseyjohnson.com and
www.stormwatches.com.
Need to de-stress and buy yourself a present? You will be
able to bid on a weekend away, restaurant dining, a spa
experience, or some bestselling books!
New and exciting items are coming in every day, and by
signing up for 2010 auction alerts, you will receive periodic
e-mails alerting you to great items that we have received
and insider info as to when throughout the month of
October we will be posting them so that you can be the first
to bid!
Pre-register now to be among the first to hear about
some of the exciting items that await your bid at the 2010
CBCN auction! You will also be sent an e-mail shortly after
midnight on September 30, so that you can register as soon
as the auction opens! Send an email to Vanessa Sherry at
vsherry@cbcn.ca with your name and email address and
“auction” in the subject line to sign up for our 2010 auction
alerts and pre-registration.
Best of all, you will be doing good for others as all of the
proceeds go to further the work of CBCN as the voice of
breast cancer patients and survivors.
24

network news SUMMER 2010 Vol 14, No 3
The Importance of Breast Self-Examination
By Claudette Goguen, a breast cancer survivor and friend of Suzanne LeBlanc New Brunswick member of CBCN’s Board of Directors
Information about the simple and easy technique of breast self-examination (BSE) has saved
many lives from the sometimes fatal disease of breast cancer. Suzanne LeBlanc, registered
nurse and Director of Canadian Breast Cancer Network for New Brunswick, is proof that it
works. Having survived breast cancer to tell the story, she is now a strong advocate of this
diagnostic method for detecting breast cancer.
This is a discipline that began several years ago when
Suzanne was in training to be a nurse. She was encouraged to
do breast-self examination regularly, once a month. She had a
friendly relationship with her breasts, which were fairly heavy.
“I know my breasts,” Suzanne declared. So when she felt a
lump, she realized immediately that an intruder had invaded.
Research has shown that early detection and diagnosis of a
lump provides a greater chance of survival.
It is really important to know your breasts by regularly
examining them. When you know what is normal for you,
you will also know when something abnormal is present,
like a lump or swelling in your breast or armpit; any change
in breast size or shape; dimpling or puckering of the skin;
redness, swelling and increased warmth in the breast; nipple
turned inwards or/and crusting or scaling on the nipple.
In 2006, when Suzanne found a lump, never in her wildest
dreams did she think that it could be cancer. According to the
diagnostic mammogram, it was only fatty tissue. Six month
later, after continued checking of her breast, she noticed
that the lump was increasing in size. Another visit to her
physician resulted in further diagnostic measures: another
mammogram, a scan and a biopsy.
Suzanne considered herself to be healthy; she had never had
anything worse than the common cold. She was 42 when her
doctor announced that she had cancer. She and her husband
Arnel were very upset. She was still working as a nurse, and
her daughter was only seven-years-old. Her whole world
turned upside down. Initially, it was like a death sentence,
and she couldn’t help but wonder who would take care of her
family when she was gone.
Her surgeon suggested a lumpectomy, which was
performed. But unfortunately, an infection set in a week
later, and because of the infl ammation and three positive
lymph nodes, she agreed to have a mastectomy. Suzanne
thought her problems would then be solved, but more agony
Suzanne LeBlanc and her mother Marianne
was ahead of her. The infl ammation was gone, but she
needed chemotherapy and radiation, six of each. Chemo
decreased her blood platelets, and her immune system
became very weak.
She was prescribed Tamoxifen for fi ve years, and since her
cancer was HER2 positive, she needed 18 treatments of
Herceptin, to which she reacted violently to the point of being
hospitalized four times, in isolation.
Even as bad as all this was, her main anguish was what effect
it would have on Semida, her only child. She worried, asking
herself, “How will this young child cope? Will she accept my
illness?” In spite of her anxiety about this, Suzanne said that
her daughter was her reason for living. She stated that Semida
was her inspiration during this ordeal.
Suzanne’s experience with cancer and all its complications
was most distressing. Losing her hair, emotional turmoil,
drained physical state. She said that she would not wish that
on her worst enemy. But by the grace of God, she is with us
today and striving.
25

ESSENTIAL NEWS FOR CANADIANS AFFECTED BY BREAST CANCER
A grateful breast cancer survivor, Suzanne chose to give back
her energy and time to volunteer on the Canadian Breast
Cancer Network Board of Directors, representing the province
of New Brunswick. CBCN has as a vision to work toward the
prevention and eradication of breast cancer.
One of Suzanne’s tasks is to educate women and men about
how to do breast self exam. She does presentations and
demonstrations at different organizations and groups, carrying
her educational kit, which includes breast prostheses with
different sized lumps.
Suzanne believes so strongly in the effectiveness of breast
self-examination as a diagnostic tool that she taught Marianne,
her 85-year-old mother, who is illiterate, how to do it. Marianne
found a lump, which the doctor confi rmed was cancerous.
Never in her wildest dreams did Suzanne think that her
darling mother would be diagnosed with breast cancer. But
one life was prolonged because Suzanne took the time to
show someone she cared about this technique. This has led
Suzanne to believe more than ever that these examinations
can save more lives in the future.
This method is not sophisticated or complicated, but is a lifesaver.
It’s as easy as 1, 2, 3! Having a personal program of
regular self-examination to detect abnormality is vitally important.
Let’s take an active role toward our breast health by getting
to know our breasts and talking to our doctors about any
changes!
This article was written by Suzanne’s friend and a breast cancer survivor,
Claudette Goguen.
Mona Forrest, CBCN Deputy CEO, Rosalind Bell, Breast Cancer Action president, and Jenn McNeil, CBCN operations manager, at the Chateau Laurier reception
for Breast Cancer: Economic Impact and Labour Force Re-Entry
research report, May 27, 2010
Photo: Soesi Atantri
26

network news SUMMER 2010 Vol 14, No 3
Working Together for Patients with Metastatic Breast Cancer
Canadian Breast Cancer Network Attends the 1 st Pfi zer Oncology Patient
Dialogue By Jackie Manthorne, CBCN CEO
Jackie Manthorne, CBCN Chief Executive Offi cer, and Mona
Forrest, CBCN Deputy Chief Executive Offi cer, attended
the 1st Pfi zer Oncology Patient Dialogue on April 12-13
in Berlin, Germany. This meeting brought together 16
representatives from patient organizations from across
Europe and Canada to engage in a dialogue and to share
information, experiences and needs with Pfi zer Oncology
and with each other.
European organizations represented included La
Federación Española de Cáncer de Mama; Dutch Breast
Cancer Association; Irish Cancer Society; Panhellenic
Association of Women with Breast Cancer; Swedish Breast
Cancer Association; Susan G. Komen Italia; Associazione
Arlenika Onlus; Europa Donna Forum France; Breast
Cancer Care; Stiftung PATH; Mamma Mia! (breast cancer
magazine). Canadian organizations which attended were
the Canadian Breast Cancer Network and Willow Breast
Cancer Support Canada.
Dr. Andreas Penk, President of Pfi zer Oncology Europe,
opened the fi rst Patient Dialogue. Dr. Penk presented
Pfi zer’s mission to cure or control cancer with breakthrough
medicines rather than medicines with only marginal
improvements. He then touched on the challenges facing
patients in keeping up with scientifi c advancements in this
rapidly evolving fi eld.
Manthorne said that these calls to action are in response
to breast cancer being the leading cause of cancer deaths
in Europe, with the current prevalence of 400,000 deaths
worldwide. As there is no cure for metastatic breast cancer,
patients’ needs are often overlooked and under reported.
The Advocacy Working Group agreed that treatment enables
patients to live longer but there are huge gaps in treatment
provision and patient support because patient groups tend to
focus on the newly diagnosed rather than metastatic breast
cancer patients. There is also a need to educate healthcare
professionals about metastatic breast cancer as a chronic
illness as well as to support Metastatic Breast Cancer
Awareness Day on October 13 of every year.
Additional topics discussed during the Patient Dialogue
meeting were personalized medicine; the BRIDGE Survey,
where 950 metastatic breast cancer patients in fi ve
European countries were asked about their experiences,
attitudes and needs; clinical trials; breakout sessions on
how to improve support for patients with metastatic breast
cancer; presentations from leaders of cancer advocacy
organizations.
Metastatic Breast Cancer Advocacy Working
Group Consensus Report
Jackie Manthorne, CBCN CEO, explained the work of the
Metastatic Breast Cancer Advocacy Working Group. The
Consensus Report, which was previously printed in Network
News, prioritizes three areas for immediate action: 1) improve
access to tailored information, resources and support for
women with metastatic breast cancer; 2) heighten attention to
the metastatic breast cancer community by creating a unifi ed
voice and platform which speaks to their unique needs; 3)
increase understanding of how to access clinical trials.
Representatives of patient groups and Pfizer gather at the 1st Pfizer Oncology
Patient Dialogue on April 12-13 in Berlin, Germany. Of note: Front row
centre: Dr. Andreas Penk, President of Pfizer Oncology Europe; Jackie
Manthorne, CBCN CEO followed by Mike Braun, Manager, Non-Profit Health
Organizations, Pfizer Canada; Mona Forrest, CBCN Deputy CEO is in the
second row between Dr. Penk and Ms. Manthorne.
27

National Partners
• Breast Cancer Society of Canada
• Canadian Breast Cancer Foundation
• Canadian Lymphedema Framework
• Canadian Cancer Society
• Canadian Cancer Society Research Institute
• Ovarian Cancer Canada
• Willow Breast Cancer Support Canada
• World Conference on Breast Cancer
Provincial/Territorial Networks
• BC/Yukon Breast & Gynecologic Cancer Alliance
• Breast Cancer Network Nova Scotia
• Manitoba Breast and Women’s Cancer Network
• New Brunswick Breast Cancer Information Partnership
• Northwest Territories Breast Health/
Breast Cancer Action Group
• Nunavut Cancer Network
• Ontario Breast Cancer Exchange Project (OBCEP)
• Prince Edward Island Breast Cancer Information
Partnership
• Qulliit Nunavut Status of Women Council
• Saskatchewan Breast Cancer Network (SBCN)
• The Newfoundland and Labrador Lupin Partnership
Provincial/Territorial/Regional/Local Partners
• Amitié Santé 04
• Association à fleur de sein
• Au Seingulier
• Breast Cancer Action Kingston
• Breast Cancer Action Manitoba
• Breast Cancer Action Montréal
• Breast Cancer Action Nova Scotia (BCANS)
• Breast Cancer Action (Ottawa)
• Breast Cancer Action Saskatchewan
• Breast Cancer Centre of Hope (Winnipeg, Manitoba)
• Breast Cancer InfoLink (Calgary)
• Breast Cancer Support Services Inc. (Burlington, ON)
• Breast Cancer Research and Education Fund
• Breast Health Centre of the Winnipeg Regional
Health Authority
• Breast of Canada Calendar
• Canadian Breast Cancer Foundation – Ontario Chapter
• Cancer Care Manitoba – Breast Cancer Centre of Hope
• First Nations Breast Cancer Society
• FLOW
• Hereditary Breast & Ovarian Cancer Society of Alberta
• Lymphedema Association of Ontario
• Manitoba Breast Cancer Survivors Chemo Savvy Dragon
Boat Team (Winnipeg)
• Miles to Go Healing Circle - Six Nations (Ontario)
• New Brunswick Breast Cancer Network
• Olive Branch of Hope
• Organisation québécoise des personnes atteintes
de cancer
• Prince Edward Island Breast Cancer Support Group
• ReThink Breast Cancer
• Sauders-Matthey Cancer Prevention Coalition
• Sentier nouveau Inc.
• Sister to Sister: Black Women’s Breast Cancer Support
Group (Halifax, NS)
• Soli-Can
• The Young and the Breastless
• Virage, Hôpital Notre-Dame du CHUM
Key Partners in Other Sectors
• Amyotrophic Lateral Sclerosis Society of Canada (ALS)
• Anemia Institute of Canada
• Canadian Health Coalition
• Canadian Health Network
• Canadian Hospice Palliative Care Association
• Canadian Organization for Rare Disorders
• Canadian Prostate Cancer Network/National Association
of Prostate Cancer Support Groups
• Canadian Science Writers’ Association
• DisAlbed Women’s Network Ontario
• Epilepsy Canada
• Early Prostate Cancer Diagnosis Ontario
• HPV and Cervical Health Society
• National Council of Jewish Women of Canada
• National Council of Women of Canada
• Newfoundland and Labrador Women’s Institutes
• Ontario Health Promotion Project
• Ottawa Health Coalition
• Parent Action on Drugs
• Quality End-of-Life Care Coalition
• Women’s Centre of Montreal
• Women, Health and Environments Network
• Women and Rural Economic Development
International Partners
• National Breast Cancer Coalition (Washington, D.C.)
• Philippine Breast Cancer Network
CBCN is represented on the following groups
• Best Medicines Coalition
• Canadian Breast Cancer Research Alliance (CBCRA)
• Canadian Cancer Action Network (CCAN)
• Canadian Association of Psychosocial Oncology Ad-hoc
Project Team for the project Creating a Community for
Knowledge Exchange and Capacity Building
• Canadian Breast Cancer Screening Initiative
• Coalition priorité cancer au Québec
• Community Capacity Building Committee, Canadian
Breast Cancer Initiative, Public Health Agency of Canada
• Episodic Disabilities Network
• Metastatic Breast Cancer Global Advocacy Advisory Board
• Provincial Cancer Control Strategy, Newfoundland
and Labrador
• Provincial Wellness Coalition Sub-committee for Healthy
Living, Newfoundland and Labrador
• Saskatchewan Cancer Advocacy Network
CANADIAN BREAST CANCER NETWORK | 331 COOPER STREET, SUITE 300 OTTAWA ON K2P 0G5 | Toll-Free: 1-800-685-8820
cbcn.ca
Members, Friends, Funding
Partners and Corporate Friends
CBCN gratefully acknowledges
the following individuals and
organizations for their financial
contributions for this financial
year
Donors and Supporters
CBCN gratefully acknowledges
the following individuals and
organizations for their financial
contributions for this financial
year (July 1, 2008 to present)
Member ($25-$99)
Hundreds of individuals and
groups across the country
Friends of CBCN ($100-$499)
Alwyn Anderson
Dolores Ast
Lisa Bélanger
Eva Bereti
Isabel Burrows
Dr. Eva Butler
Carol Ann Cole
Dr. Brian D. Doan
Karen DeKoning
Helen Elsaesser
Beata Faraklas of All Hair
Alternatives & Mastectomy
Boutique
Chris Foster
Ratna Ghosh
Stuart Gray
Dolores Griffin
Darlene Halwas
Holly Hinds
Diana Inselberg
Maureen Jackman
Fran Jones
Dr. Helen M. Madill
Diane Moore
Dr, Kathy Pritchard
Laurie Porovsky-Beachell
Mary Rogers
Lyle Spencer
Patricia A. Stephens
Charles & Nancy Weisdorff
Jan Zwicky
Bronze Level Supporters
($500-$4,999)
Bell Canada
CyberAlert
Telus Communications
Tencor
Virage
Silver Level Supporters
($5,000-$24,999)
Dell
Mike’s Hard Pink Lemonade
Temerty Family Foundation
The Harold Crabtree Foundation
The Quilt Project
Gold Level Supporters
($25,000-$99,999)
AstraZeneca
GlaxoSmithKline
Novartis
Pfizer
Roche
The Cure Foundation
Platinum Level Supporters
($100,000 and over)
Breast Cancer Society of Canada
Government
City of Ottawa, Ottawa
Partnership for Jobs
Ministry of Training, Colleges
and Universities, Government
of Ontario
Public Health Agency of Canada
Service Canada
Canada Summer Jobs
Corporate Sponsors
National Fundraising Network /
Chocolates for Charity
Pizzazzing You
Sassy Sam’s
MOMPowered Inc.
Novelty Canada
Canadian Gift Concepts