Network News - Fall 2007 (PDF 1.1Mb) - Canadian Breast Cancer ...

Vol. 11, N° 1 Canadian Breast Cancer Network Fall 2007
Network News
esseNtIAL NeWs For CANAdIANs AFFeCted A BY BreAst CANCer
Getting together to inform,
support and inspire

Network News
Volume 11, Number 1, Fall 2007
ISSN: 1481-0999 Circulation: 6,500
President’s Report
By Diana Ermel, President
PUBLICATIONS MAIL AGREEMENT NO. 40028655
RETURN UNDELIVERABLE CANADIAN ADDRESSES
TO CANADIAN BREAST CANCER NETWORK
300-331 COOPER ST
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 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,
300-331 Cooper Street, 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,
Chantale Lavoie, Alicia Weiss
Contributors: Diana Ermel, Jackie
Manthorne, Diane Spencer, Lorna Larsen,
Pam Depres, Debbie Duerden McDonald,
Twila Woods, Chris Ross, Clare Barry,
Deb Cooke, Diane Buhler, Cheryl Arratoon,
Durhane Wong-Rieger, Carole Suzor,
Christine Lackan, Joanne Maclaren
Staff: Jackie Manthorne, Executive
Director, jmanthorne@cbcn.ca;
Chantale Lavoie, Project Coordinator,
clavoie@cbcn.ca; Alicia Weiss, Website
Content Coordinator, aweiss@cbcn.ca;
Maureen Kelly, Receptionist/Volunteer
Coordinator, maureen@cbcnc.ca; Sandie
Lessard, Bookkeeper, sandie@cbcn.ca
Volunteers: Angie Meagher, Marg Campbell,
Chou Tiv, Michelle Higgins
Much of the history of the breast
cancer movement in Canada
is also my history. I am going
to tell you a little bit about that history
and also provide you with information
about three seemingly diverse topics;
the Joint Oncology Drug Review
(JODR), breast self-examination, and
the upcoming National Conference
for Young Women Living with Breast
Cancer.
1993 was the year of the Montreal
National Forum on Breast Cancer. It
was a watershed experience for the
breast cancer community in Canada.
The idea that people diagnosed with
breast cancer should have their voices
heard in all the arenas that deal with
their disease began to gain foothold
across the country. Previously, the
notion that patients should have their
treatment options explained to them
and that they would be involved in
the decision making affecting their
care was novel, and it certainly was
not standard practice. The notion of
listening to the perspective of people
diagnosed with breast cancer when
making policy decisions across the
entire spectrum of the breast cancer
journey, from primary prevention to
palliative care, was even more unusual.
The Montreal forum resulted in a
commitment of health care providers,
In this issue:
President’s Report....................2
Executive Director’s Report..............4
National Conference for Young Women
Living with Breast Cancer ..............6
I Owe My Life to My Daugher............7
A Mother and Daughter’s Journey Through
Breast Cancer. .....................9
How Will I Ever Look “Normal” Again? ....11
Two Fronts: Breast Cancer and Disability. . 12
My Experience with Inflammatory Breast
Cancer. .........................14
Celebrating Life. ...................16
We are all paddling through the pain .....17
Holding On .......................18
Diana Ermel
President of the Canadian
Breast Cancer Network
researchers, governments, and people
affected with breast cancer to work in
collaboration and partnership to deal
with the many issues related to breast
cancer.
1993 was also the year I was
diagnosed with breast cancer. Five
months following my diagnosis I was
privileged to attend the forum and
witness the vision of people diagnosed
with breast cancer as they began to
plan for the development of a national
network. The following November, I
attended the founding meeting of the
Canadian Breast Cancer Network. I
became a breast cancer advocate. In
October 2006 I was elected president of
CBCN. My breast cancer journey has
been one of involvement in advocacy
and action. My vision is one where
people affected by breast cancer have
the information they need when they
Remember Me? ..................... 18
Checking It Out: The Challenge of Raising
Breast Health Awareness with Young
Women........................... 19
Finding reliable health information to
support decisions.................... 21
What Every Cancer Patient Should Know
about Fatigue and Anemia.............. 23
Post-Mastectomy Sexuality in Young Women
who have Survived Breast Cancer. ....... 25
The Art and Science of Prosthetic Bra Fitting:
Feeling comfortable, looking great ........ 27
Breast Tattooing: Is it for you? ........... 28
Research Studies of Interest to Young
Women........................... 29
2 Network News Fall 2007

need it in order to use it when they
need to. Information enables people to
have their voices heard and to become
informed consumers whether it is
in a conversation with a health care
provider or speaking to a group of
policy makers.
The Joint Oncology Drug Review
(JODR)
On April 30 th , 2007, I presented to
the House of Commons Standing
Committee on Health Hearings on
Cancer Drugs. This was a first for
CBCN and me. The committee was
seeking our perspective on the Common
Drug Review (CDR), which makes
recommendations about which oral
medications to list in provincial and
territorial drug formularies, and on the
Joint Oncology Drug Review (JODR).
The JODR is an interim review process
for the listing of all cancer medications.
It is an interprovincial initiative and
is using the decision-making model
currently in place in Ontario. The most
glaring issue for CBCN and others is
that Ontario is a province with one of
the poorest records for providing access
to cancer medications.
It is the advent of new targeted and
very expensive cancer medications
that has given rise to the issues within
the CDR and the JODR. We expressed
our concerns that the model on
which the interim review process is
based will not result in decisions that
maximize the health of Canadians
diagnosed with cancer, that the JODR is
nothing more than a cost-containment
initiative, and that in this process
patients are considered last, if at all.
Within the proposed process there
is the potential that decisions will be
made about the lives and qualityof-life
of Canadians without any
understanding of the perceptions or
involvement of those affected by those
decisions (patients, families, and their
physicians); treatment options will still
be determined by where people live in
Canada, not by evidence; and patients
will be denied access to quality drugs.
We told the committee this is not
acceptable. Patients must come first.
Whatever system is in place, it must be
one where quality of life is prolonged
and lives are saved. CBCN called for a
transparent and just decision making
system,
• where patients can move seamlessly
from a clinical trial to ongoing access
to needed medications,
• where patients are not denied access
to needed drugs, and
• where no Canadian must choose
between hope or bankruptcy or
dying.
The funding of cancer medications is
a complex process and governments
seem to be passing the responsibility
back and forth. Access to medications
is a provincial responsibility. However,
the provinces look to the Federal
government to increase transfer of
funds to address rising health care
costs. Even though the JODR is
an interprovincial initiative, each
jurisdiction will still make its own
decision about whether or not to fund a
drug. These circular excuses must stop.
I encourage you to talk to your MLAs
and MPs to see what they are doing to
ensure equal access to needed cancer
medications.
Breast Self-Examination
While the JODR is a brand new
initiative, breast self-examination
(BSE) has been promoted for years. In
July, the Globe and Mail interviewed
me as a representative of the voice in
favour of breast self- exam. The Globe
was looking for someone to speak in
opposition to the position of the Society
of Obstetricians and Gynecologists of
Canada (SOGC). The SOGC, based on
research findings that indicate routine
teaching of breast self-examination
does not reduce mortality and likely
increases benign biopsy rates, have
made three recommendations regarding
BSE. They are 1) that women should
not be routinely taught BSE, 2) a full
discussion of BSE and its risks should
be provided to women who request it,
and 3) if a woman makes an informed
decision to practice BSE, care providers
need to ensure she is taught correctly
and performs BSE proficiently. The
move, then, is from encouraging all
women to practice BSE to providing
the information and instruction only to
those women who request it.
The research has resulted in
encouraging women to focus on
breast health. CBCN has always
promoted breast awareness as one part
of maintaining breast health. Breast
awareness involves becoming familiar
with what our breasts and underlying
tissue normally feel like and thus
being aware when there is a change. It
is CBCN’s position that the best way
to become familiar with our breasts is
through beast self-exam. By knowing
our own breasts we are able to recognize
subtle changes, pay attention to them,
and see a doctor when a change is
noticed.
BSE is also one of the three components
of breast screening. The three related
procedures that will help detect
abnormalities are: self examination
of one’s breasts on a monthly basis,
clinical breast exam (cbe) by a
physician or nurse practitioner, and
mammography. Women under 50
should examine their own breasts
each month and have a yearly clinical
breast exam (cbe) by a health care
practitioner. For most women in
Canada, mammography screening
is not available until they are 50. It
is unfortunate that screening is not
provided for those between 40 and
50 years old. Younger women tend
to have denser breasts that make
detecting abnormalities very difficult or
impossible with our current technology.
Their own familiarity with their breasts
is the best chance young women have
of recognizing changes early.
Of course each individual woman
should make her own decision about
whether to practice breast self-exam
or not, but it is diminishing be told we
should not be partners in taking care
of our bodies. Examining our breasts
is part of taking charge and having a
sense of control over what is going on
with our body. The important thing to
remember is that examining our breasts
Continued on page 5
Network News Fall 2007 3

Executive Director’s Report
By Jackie Manthorne, Executive Director
You have likely noticed that we
haven’t published an issue of
Network News since the fall of
2006. This is because of financial issues
resulting from a decision by the Public
Health Agency of Canada and more
specifically the Canadian Breast Cancer
Initiative to institute a 25% cut in each
of the last three years of funding to
our organization and to the provincial
and territorial breast cancer networks
in the four year funding cycle 2004-
2008. While over the years the Network
has attempted to diversify its sources
of funding with some success, cuts of
this magnitude cannot fail to have an
impact. If these funding cuts by the
Federal government to CBCN and
the provincial and territorial breast
cancer networks and promises of more
funding cuts in the future alarm you,
please consider telling your Member
of Parliament of your concern. For
detailed information about future cuts
and what you can do to stop them,
contact me at jmanthorne@cbcn.ca or
1-800-685-8820.
One way you can help the Network is
to become a member. Just fill out the
enclosed coupon and return it and your
cheque or money order in the postage
paid envelope. You may also want
to consider becoming a Friend of the
Network by donating $100 or more.
Tax receipts are issued for all donations
over $10.
The October 2007 Second Annual
Breast Cancer Awareness Month
Online Auction
By the time you receive this issue of
Network News, the Network’s online
auction will be underway. But even
though the auction started on October
1, don’t forget that it doesn’t end until
October 31, and that hundreds of good
deals will still be posted!
We have close to 1,000 fantastic
items for you to bid on this year.
Categories include: artwork; books;
breast cancer awareness; coffees and
sweets; cosmetics and bath; crafts;
entertainment (theatre, comedy clubs,
dinner theatre, festival packages,
music, theatre); florists; gas and
groceries; hotel/resort packages;
jewellery; magazines; CDs; pet supplies;
photography services; restaurants; spas;
sports and recreation (fitness clubs,
game tickets, memorabilia, outdoor
activities and adventures, ski and golf);
tourism (attractions and historic sites,
galleries, museums), toys and games.
Check our site at www.cbcn.ca for the
online auction website, or go to
http://www.realauction.ca/ and follow
the links. Thanks to RealDecoy which
developed and donated the auction
website, and to all our donors, which
are listed elsewhere in Network News.
This year is bigger and better than last
year, so don’t miss out!
If you still have items to donate, please
contact Angie Meagher at 1-800-685-
8820 ext 227 or ameagher@cbcn.ca.
Canadian Breast Cancer Network
Annual General Meeting
The Annual General Meeting (AGM)
of the Canadian Breast Cancer Network
(CBCN) will be held at the Sheraton
Centre, 123 Queen Street West in
Toronto on Friday, November 2, 2007
at 2 pm. The AGM will be followed
by a short reception. This year, the
Network’s AGM will be the first
event at the Canadian Breast Cancer
Network-Rethink! Breast Cancer
National Conference for Young Women
Living with Breast Cancer.
The Directors of CBCN would be
delighted if you would join us.
For more information, please call
Maureen Kelly at 1-800-685-8820,
ext. 225.
Jackie Manthorne
Executive Director of the
Canadian Breast Cancer Network
Join the CBCN Adopt-a-Riding
Campaign
CBCN has an ongoing Adopt-a-Riding
campaign where breast cancer survivors
and other concerned individuals and
groups “adopt” their MP, MPP, MLA
or MNA and keep him or her informed
about issues related to breast cancer.
The Adopt-a-Riding Campaign is
composed of three distinct phases:
1. Initial contact with the adopter’s
representative to build a relationship
with him or her and to provide
information about the Canadian
Breast Cancer Network and its work
2. Special national, provincial or
territorial campaigns, when every
representative is asked to help with
or intervene on a specific issue
3. Election campaigns, when the
objective of the Adopt-a-Riding
campaign is to increase awareness
among candidates of all parties
about breast cancer and the issues
facing survivors
We invite you to join this campaign!
For additional information, please
contact executive director Jackie
Manthorne at 1-800-685-8820 ext. 222 or
jmanthorne@cbcn.ca.
Join the Network’s Facebook Group
If you are a member of Facebook,
please join the Canadian Breast Cancer
Network Facebook group. That way
you will receive regular messages and
updates about the Network’s upcoming
events, like our National Conference
4 Network News Fall 2007

for Young Women Living with
Breast Cancer on November 2-4,
our October 2007 online auction,
and educational webcasts and
teleconferences. To find our group,
simply type Canadian Breast Cancer
Network in the Facebook search box.
Advertise in Network News!
CBCN is now offering the
opportunity to advertise in Network
News. If you have an upcoming
conference or event or offer services
to the survivor community, please
consider placing an ad. Our rates
are quite reasonable, given that you
will reach over 3,000 groups and
individuals across Canada. For
more information, contact Chantale
Lavoie at 1-800-685-8820 or e-mail
clavoie@cbcn.ca.
Update on our Website
CBCN’s website (www.cbcn.ca) is
currently receiving over 3 million
hits a month, which represents
40,000 to 60,000 distinct users a
month! If your group is holding
an event, launching a new guide
or video, looking for volunteers
or new members, or has news to
communicate to the breast cancer
community, CBCN’s site is the place
to do it. Send news and information
to Website Coordinator Alicia Weiss
at aweiss@cbcn.ca, or call her at
1-800-685-8820, ext. 221.
Canada Helps Online Donation
Program
Donate to CBCN projects online!
Visit CBCN at www.cbcn.ca and
connect to the Canada Helps website
to make a secure donation. Tax
receipts are sent out promptly. Or
visit www.canadahelps.org and
access the Canadian Breast Cancer
Network through the organization
search. We thank you in advance for
your donations.
President’s Report
Continued from page 3
is about learning what is normal for
us and then being aware if there are
changes. We all have lots of lumps
and bumps in our breasts, the vast
majority of which are not cancer. CBCN
believes that until there is a better
option, women should be encouraged
and supported in learning what is
normal for their breasts through selfexam.
Time and again we hear stories
that are the exception to the results of
the BSE research. So many of us know
that if we hadn’t found our lump, it
would have continued to grow until
found at a physical exam or through
mammography. For many women this
could be years. It is counterintuitive to
be told that earlier detection did not
make a difference.
National Conference for Young
Women Living with Breast Cancer
Opportunities to explore the issues of
equitable access to cancer medications
and the best ways to promote breast
health will be abundant at the
upcoming National Conference for
Young Women with Breast Cancer
in Toronto November 2-4, 2007.
CBCN and Rethink! Breast Cancer are
co-presenting this conference for young
women with breast cancer. We are so
excited about being able to offer this
experience for young women right
here in Canada. The tag line for the
conference is: Getting together to inform,
support, and inspire. I am confident it
will do that and more.
Our Executive Director, Jackie
Manthorne, has done and continues
to do the most amazing job of finding
sponsors for the conference. Chantale
Lavoie, conference manager, and
the organizing committees are to be
commended for their dedication to
bringing this event to fruition. Thanks
so much to all of you.
The conference will include
inspirational keynote speakers, expert
medical updates specific to young
women, community resources
and supports, opportunities to
connect and share experiences,
practical tips for living with
breast cancer, workshops, exhibitors
and poster sessions, breaks for fun
and physical activity, opportunities
for creativity and reflection,
and evening events to celebrate
survivorship. For more information,
check out the Conference website at
www.youngwomensconference.ca
I look forward to seeing you there
and to continuing to work with you in
ensuring that women diagnosed with
breast cancer have the information and
supports they need.
Diana was diagnosed with breast cancer
in 1993. As a breast cancer survivor,
educator, and health care professional,
she has dedicated her volunteer time
and energy to cancer issues at both
the provincial and national level. Her
activities with these organizations
have been informed by her vision of a
future where people affected by breast
cancer have the information and
support they need when they need it,
and that groups and agencies working
on behalf of people with cancer work
collaboratively. She is married with
three grown children and one grandson
(the love of her life). She retired from
Nursing Education in June 2006,
but was rehired by the program to
complete a contract. She hopes to try
retirement for real in 2008. As well as
being president of the Canadian Breast
Cancer Network, Diana is on the Board
of the Canadian Breast Cancer Research
Alliance (CBCRA) representing CBCN
and founder and Board member of
the Saskatchewan Cancer Advocacy
Network (SCAN). Among others,
she sits on the Breast Cancer Care
Steering Committee (BCCSC) of the
Saskatchewan Health Quality Council
and the Saskatchewan Cancer Agency,
the Canadian Strategy for Cancer
Control working group on clinical
practice guidelines, (CSCC CPG WG)
and the Canadian Cancer Action
Network.
Network News Fall 2007 5

The Canadian Breast Cancer Network-Rethink!
Breast Cancer National Conference for Young Women
Living with Breast Cancer
By Jackie Manthorne, Executive Director
I
am really pleased that the Canadian
Breast Cancer Network and Rethink!
Breast Cancer are co-presenting
the National Conference for Young
Women Living with Breast Cancer at
the Sheraton Centre in Toronto, Ontario,
from November 2-4, 2007. As you may
know, the idea of a conference for young
women came from our 2005 Consultation
with young women with breast cancer,
many of whom have been involved in
the planning of the Conference.
Registration has been open since
early September, so if you haven’t
already registered, please go to
www.young womensconference.ca and
register now.
Plenary and Workshop Topics
We are excited by the fantastic line-up
of Plenary and workshop topics. Plenary
speakers include Dr. Marla Shapiro,
Beverly Thompson, Vanessa Turke,
Dr. Shailendra Verma, and Libby
Znaimer. Additional plenary and
keynote speakers will be announced
after we go to press, so stay tuned to the
Conference website!
Workshop topics and speakers are:
• Children, Cancer & Coping; “Kids
Need Support Too,” Fiorella
Lubertacci
• Managing Your Cancer Journey,
Fiorella Lubertacci
• Cancer; 101 Solutions to Prevent
Cancer, Liz Armstrong
• Chemo Fog, Dr. Barbara Collins
• How to be a Brest Cancer Advocate,
Jackie Manthorne
• Sexuality & Intimacy After Breast
Cancer, Diana Leitch, RN
• Fish Out Of Water: Men Being Helpful
To Women With Breast Cancer,
Dr. Ross Gray and Dr. Karen Fergus
• Online Support Groups—What’s Out
There And Where Is It Going,
Dr. Joanne Stephens
• Sharing Strength – Training for
Women Recovering From Treatment,
Dee Miller
• Mind, Body & Spirit Connection,
Dr. Robert Ruthledge and Dr. Tim
Walker
• Understanding Your Pathology
Report, Pat Antonick, RN
• Couples Coping With Breast Cancer,
Dr. Karen Fergus
• How We Told Our Children, Barbara
Thompson
• Psychosocial Issues That Can Impact
Your Life, Jill Taylor-Brown
• Writing for Your Health;
Transformations, Cher Curshen
• A Reflexion of the Self; Mandala
Creations, Cher Curshen
• Yoga and Breast Cancer, Jackie Savy-
Cannon
• Access to Breast Health and Breast
Cancer Services for Lesbians and
Bisexual Women, Dr. Chris Sinding,
Jennifer Alexander and Terri
Henderson
• Inflammatory Breast Cancer,
Dr. Debbie Duerden McDonald
• Advanced Breast Cancer; Research
Updates, Dr. Mark Clemens and
Dr. Barbara Fitzgerald
• Mindfulness Meditation: Finding
your inner peace, Stephane Bensousan
M.A., B.Sc.
• What is Lymphedema, Michel Eid
• Naturopathic Prevention Protocol and
Self Drainage Massage, Sat Dharam
Kaur
• Lymphedema – The LeBed Method,
Lise Houle
• Breast Cancer Reconstruction,
Dr. Edward Buchel
• What do you plan to do with this one
wild and precious life?, Kathy Santini,
Survivor and Life Coach
• Making Peace with Menopause,
Dr. Carol Scurfield
• Medical/Research Plenary,
Dr. Shailandra Verma and others
• Hearing the Survivor Voice, Dr. Pam
Catton
• Nutrition and Breast Cancer, TBD
Poster Presentations and Exhibit
Space
The young women’s conference will
also highlight research being conducted
about and activities for young women
with breast cancer, and dozens of
booths will provide information and
exhibits. For more information on poster
presentations and exhibitors, please go
to www.youngwomensconference.ca or
contact Maureen Kelly at Maureen@cbcn.ca
or 1-800-685-8820 ext. 225.
Sponsors
We offer our sincere appreciation to our
current sponsors:
Diamond Sponsors and Co-presenters:
Canadian Breast Cancer Network and
Rethink! Breast Cancer
Gold Sponsor: Canadian Breast Cancer
Foundation – Ontario Chapter
Silver Sponsor: The Cure Foundation
Bronze Sponsors: AstraZeneca;
Canadian Cancer Society;
GlaxoSmithKline; Ortho-Biotech
Sponsors: Novartis; Pfizer
Last minute sponsors are invited to
contact Canadian Breast Cancer
Network executive director Jackie
Manthorne at 1-800-685-8820 ext. 222
or jmanthorne@cbcn.ca
Meanwhile, we will see you November
2-4 in Toronto!
6 Network News Fall 2007

The surgeon examined me and explained
that since the “mass” was soft, round
and detached, it was very likely a fluidfilled
cyst. I was relieved again, knowing
my mother had endured cysts for years.
The surgeon still felt I should have an
ultrasound-guided core biopsy “just to
be certain.” The day of the biopsy, I was
scheduled to speak at the graduation
ceremony of the high school where I
worked but was on maternity leave from.
I was honoured to have been asked to
speak and concentrated on what I would
say to these young students instead of
the procedure. I spoke at graduation that
evening with an ice-pack in my bra and
talked about facing fears, taking chances
and making a mark on the world. I did
not realize how closely I was about to
follow my own advice.
I Owe My Life to my
Daughter
While pregnant with Rebecca,
I found a lump in my breast,
pushed to the surface as my
body prepared for lactation. Without her,
my tumour likely would have settled
deep inside my breast tissue, growing
unbeknownst to me for years, until it
was too late.
In January 2001, I was five months
pregnant. In the shower I did my breast
self-exam, as I had once a month for ten
years. Suddenly and without any doubt,
I felt a lump. It was close to the surface,
it was round, it was squishy – all the
things cancer is not – and yet I felt deep
fear in my heart.
At my monthly prenatal check-up, my
heart rate was elevated to the point where
my OB/GYN asked me to lie down. I
explained I had found a lump and I was
scared. After she’d poked and prodded,
By Diane Spencer
she declared the lump a “clogged milk
duct.” I was instantly relieved.
At the end of May, I went in for my sixweek
check-up and toted my newborn to
her office. Rebecca lay on my chest while
she examined me, checking my incision
and the size and shape of my uterus.
In the bravest voice I could muster I
said, “You know, even though I’ve been
nursing with no problem, that milk duct
is still clogged.” I stared at the ceiling,
waiting for a response. I knew from
her pause that this should not be the
case. She examined my breast again and
called a friend –a surgeon. Because I was
nursing, I could not have a mammogram,
so she ordered an ultrasound and made
an appointment.
The following Friday, I prepared to
go to my follow-up appointment with
the surgeon. In the shower, I imagined
what it would be like to lose a breast
to cancer. As I nursed Rebecca in the
waiting room, I had a vivid image of my
surgeon telling her peers at lunch, “Well,
I have to go and tell this 30-year-old
new mother that she has breast cancer.”
In the office, she couldn’t look me in
the eye. And I knew. Her actual words
nauseated me: “The news isn’t good.” I
looked across the room at my husband
as he held our eight-week-old daughter
and listened as she delivered a barrage
of language I did not yet understand:
tumor type, hormone receptors, grade,
aggressiveness, lumpectomy, lymph
node dissection, surgery, chemotherapy,
and radiation therapy. I understood that
I had a very rare tumour that took seven
pathologists to identify. I understood
that, at thirty, I was the youngest person
to be diagnosed with breast cancer in
my local hospital. I sensed urgency; she
wanted me to have surgery on Monday
morning. It was Friday.
The drive home was quiet. Rebecca
slept in her car seat and still nauseated,
I tried to convince myself I wasn’t going
to die. My husband, a logical man in
the medical profession, suggested they
would just take the tumour out and I
would live happily-ever-after. People
survive cancer all the time, he said, when
it’s caught early and removed cleanly. I
had no choice but to focus on this as we
told our families that evening.
Network News Fall 2007 7

Nonetheless, I sensed this was a journey
I had to make on my own. The tumour
was mine, the surgery would be on my
body, the chemotherapy would ravage
my veins, and it would be my hair
that would fall out. I might die. I was
terrified and felt very, very alone. No
one told me I would probably survive. I
could not find any information about my
rare tumour or anyone else close to my
age with breast cancer.
More than anything, cancer robbed
me of my experience as a new mother.
From eight weeks on, every time I
nursed Rebecca, held her, diapered
her, or comforted her, I thought about
dying. Although I tried to live normally
and enjoy my time with her, I was
overwhelmed with a sense of loss.
I silently hoped I would die before
Rebecca was old enough to understand.
I video-taped myself with her before I
started chemotherapy, so there would
be a record of what I looked like when
I was well, knowing the chemo would
make me very sick. I talked to my best
friend about staying in Rebecca’s life and
making sure my daughter would know
who I was – the good and the bad – and
I asked her to remind Rebecca over and
over again how much I loved her.
On July 16, 2001, I had a lumpectomy
and auxiliary-node dissection. I nursed
Rebecca on the other breast while in the
hospital, trying not to notice that the
nurses couldn’t look me in the eye. I was
scheduled for more tests: chest x-ray,
bone scan, CT scan. I knew what they
were looking for: more cancer. I existed
in a constant fog. I had no appetite and
my breasts stopped producing milk for
my baby. The last time I nursed Rebecca,
I cried for a long time. I had to leave
the house as she had her first bottle of
formula.
The pathology results came back
suggesting that my lymph nodes were
negative for cancer but the tumour had
an unclear margin. That meant only one
thing: more surgery. I know now the
unclear margin was probably a result of
the core biopsy, but at the time I thought
it meant the cancer was spreading.
The night the pathology came in, my
local GP called. His daughter, who
was in my Grade Ten Drama class the
following semester, had had leukemia
as a toddler. We talked for two hours.
He felt I had one chance to beat the
cancer because if it had an opportunity
to return, I would simply be treating
it. This made the choice to have a
mastectomy clear for me. Besides, with
another lumpectomy, I would need
radiation and we lived 225 kms from the
nearest site. Six weeks of daily radiation
treatment seemed impossible, given my
circumstances.
I was very fortunate to live in rural Nova
Scotia. At the South Shore Regional
Hospital, I could have a modified radical
mastectomy and immediate TRAM
reconstruction. This meant a six-hour
surgery, but I would wake up with a
breast reconstructed from my own tissue.
I felt good about my decision and the
date was set: August 22, 2001.
The morning of the surgery, I did not
grieve the breast I would lose. Just the
opposite: I felt betrayed by the breast and
was not sad to see it go. I couldn’t trust
the tissue in there. Ten days later, when
the pathology report said there was no
evidence of cancer or precancerous cells,
my best friend tentatively asked if I
regretted my choice. I absolutely did not.
I was more than relieved, and knowing
the tissue was free of cancer still gives
me comfort six years later.
Losing a breast was not nearly
as frightening as the thought of
chemotherapy. I finally met my
oncologist in September and he
suggested I could have chemotherapy.
I vowed to take anything they would
give me so I would never be able to look
back with regret. This sweet, sensitive
man assured me I was going to be
fine – which brought me to tears – and
that chemo would increase my overall
survival rate from 97 to 98% over five
years…. I was going to lose my hair and
be deathly ill for 1%? Well, I reasoned,
if you are that one person out of 100,
chemo seems like an easy choice. And I
went ahead.
My first of four cycles of A/C began
after Thanksgiving and I was finished
treatment before Christmas. I cut my
long hair very short and shaved my
head on Day 14, just as the hair decided
to come out on its own. I felt I needed
some control. I never missed a treatment
and drove myself to and from the
hospital (120 km one way) most of the
time. I learned to live with the perpetual
“hangover,” knowing the medicine
was working and thankful for modern
research.
Being so sick and looking after a new
baby was difficult, but I was coping.
Unfortunately, my husband wasn’t
coping and detached himself from
the situation as much as possible. My
early premonition about handling
this alone proved true. It is difficult
to predict how people will react when
faced with adversity and I would never
have guessed my husband would react
the way he did. I know he regrets his
inaction now, but our relationship has
never recovered. Maybe he felt I was
dying and needed to distance himself
from me for his own protection, I’m not
sure. He is who he is and I cannot fault
him for that.
On my daughter’s first birthday, I
stopped wearing my wig, and while
my one inch of hair was shocking to
those around me, I finally felt like I was
on the other side of the dark tunnel. I
started a five-year course of Tamoxifen
and patiently waited. Although I had
8 Network News Fall 2007

to be treated for post-traumatic
stress disorder and once had a breast
MRI to investigate a suspicious
mammogram result, the five years
passed quickly. Three weeks ago I
quietly celebrated my six-year postsurgery
anniversary.
After the initial shock of my
diagnosis, I didn’t ask myself, ‘Why
me?’ I tried to figure out how to
make things easier, less terrifying, for
other young women. I got involved
in the breast cancer community: I
raised money, participated, recruited,
researched and was elected to the
Canadian Breast Cancer Network
Board of Directors in 2004. This
position allows me to be involved in
the national breast cancer community,
adding insight on behalf of survivors
in various capacities. Since then, I
have met with and spoken to many
newly diagnosed women. I am a
living, breathing example of someone
who has survived – the one thing I
needed when I was diagnosed.
My daughter, my dearest gift, is now
six years old. She feeds my soul,
makes me laugh and reminds me just
how precious life is. Every milestone
of hers is something I cherish: starting
school, riding a bike, learning to
swim. I am amazed by her constantly
and I am consistently grateful that I
can be here to witness her life. I know
that I gave her life but in many ways,
she also gave me mine.
Diane Spencer-Pippy represents
Nova Scotia on the Board of Directors
of the Canadian Breast Cancer
Network. Diane teaches Grades
10 and 12 English at Park View
Education Centre in her hometown
of Bridgewater, where she encourages
students and staff to join her CIBC
Run for the Cure and Relay for Life
teams, raising thousands of dollars
each year during both events. She
enjoys searching for beach glass,
camping, great conversation with
good friends, traveling and spending
all of her spare time with her
daughter, Rebecca and their eightmonth
old Labrador Retriever, Brea.
A Mother and Daughter’s
Journey through Cancer Care
A
diagnosis of cancer in your child
is devastating. You become
caught up in a world of cancer
treatment that is both foreign and
frightening. You put your faith in the
health care system and trust in the
medical professionals that hold your
child’s life in balance. Some young adults
will survive the journey, others will not.
Our daughter, Shanna (Shan), was
diagnosed with breast cancer that had
spread to her bones in 2005. Shanna
spent two months hospitalized in a
regional health care centre. An initial
prognosis of optimism was never
realized. Shan died less than four months
after her diagnosis. She was only 24.
Many of the hospital guidelines used
for young adults facing cancer are
the same as those for older patients.
Unfortunately, young adults do not
often have the luxury of time. The
aggressiveness of the disease requires
earlier decision making and judgment
calls. Early detection and treatment is
indeed critical.
I write this story to assist other parents
and young adults who will travel our
journey. Practical tips are provided to
improve early detection, the hospital
experience and perhaps outcomes for
those following in Shanna’s footsteps.
By Lorna Larsen
1. Ask the question: “Could it be
cancer?”
Shanna, like many others, had no
known risk factors – no family history,
physically active, good nutritional
intake, healthy weight, non-smoker,
no known environmental exposure,
physically and emotionally healthy.
Shan spent 12 weeks searching for the
answer to pain in her ribs and back
and ongoing symptoms of illness. She
was repeatedly misdiagnosed by the
medical professionals we visited with
her symptoms and our concerns.
If your child’s symptoms do not
resolve, or if you are concerned, ask
the question: “Could this be cancer”?
2. Be informed
If your child requests that you be
kept informed, have the consent in
writing. Verbal consents may get
lost in the hospital bureaucracy. You
should also seek professional advice
and investigate the need for power of
attorney.
Ask the doctors and nurses to keep
you informed about the disease,
tests, and treatments. You need the
information in order to know the
questions to ask.
Network News Fall 2007 9

We were not informed that
Shanna’s breast cancer could spread
while she was receiving effective
chemotherapy. We therefore did not
have the knowledge to ask about
tests to detect metastases prior to
later symptoms. Early identification
may have improved her outcome.
Question the need for tests and their
risks and benefits and ask about the
potential side effects of medication,
chemotherapy or radiation. Investigate
pain management options that may
or may not be available. Narcotics are
only one strategy and may leave your
child too heavily sedated to visit with
family and friends. Shan wanted the
pain tolerable, but also wanted to be
alert and responsive to visitors.
If you are given literature, review
the written material and ask for
clarification in areas you don’t
understand. Your own Internet
searches may also assist you with
questions to ask. The Canadian
Cancer Society website (www.cancer.
ca/ccs) is a place to start. Be prepared
to problem-solve. After receiving a
new chemotherapy, we asked medical
staff about a symptom Shanna was
experiencing. We did not get an
answer. I read later that it was a side
effect of new drug she was receiving.
3. Seek out a patient representative or
advocate
Most treatment centres have a
professional patient advocate to
assist patients and their families in
understanding the treatment being
received, and to provide clarity
around any concerns. We were not
made aware of this service nor did
written information identify that
an advocate was available to us.
Seek help when needed and ask
for assistance. If an advocate is not
available, call on nursing or other
hospital staff for assistance. Friends or
extended family members may also be
helpful in assisting you to access the
information you require.
4. Be prepared to “hurry up and wait”
It is the expectation of the larger
treatment centres that patients are
ready when called on for tests, but the
patient is often left waiting for hours
for transport back and forth or waiting
because of a backlog in testing. The
system is set up to accommodate
the healthy worker, technician and
physician, not the seriously ill patient.
At one point it took Shanna four
hours for a twenty minute procedure.
Meals and necessary medication may
be missed during these long waits.
5. Be prepared to be challenged and
frustrated
Despite the fact that patients are told
that they are in control of their cancer
care, the hospital system rarely allows
for this flexibility. Shanna was given
three options for a procedure and
then denied her choice because there
was no operating room time made
available.
Try to hang in there. There will be
some successes and some failures. Call
on your supports and your child’s
supports; they may be able to help.
Bring in your child’s favorite food,
homemade or take out, and other
personal items that will assist your
child during his or her hospitalization
period. Their own comfortable
clothing and pillow or blanket can
make a world of difference. Laptop
computers, through dial-up option,
will allow your child to access the
internet and his/her e-mail if desired.
6. Ask for a consultation with other
specialists or other centres
Because the cancers in young people
are relatively rare, each regional
treatment centre may not have all the
answers. Others may have learned
from previous experience. If things
aren’t going well, if the doctors
appear to have run out of options,
there may be lessons learned at other
centres. This may require persistence
and support from your advocate.
Your child’s oncologist may not have
all the answers. An outside opinion
may be critical.
7. Learn basic daily care and comfort
measures
Hospital rooms are extremely dry. If
permitted, a small humidifier may
be helpful. With serious illness and
after receiving chemotherapy or
radiation, your child may require
extensive mouth and skin care. It may
be beyond the ability of the nursing
staff’s time. Simple comfort measures
such as back and foot massage and
application of heat (heated blankets)
may assist with pain control and
comfort. Nursing staff can assist you
in learning these basic skills. Friends
may also wish to help.
8. Use your support network
Call on your friends, your child’s
friends, your extended family,
neighbours, and co-workers to assist if
you are with you child 24 hours a day,
7 days a week. Meals, assistance with
basic care and moral support can help
you and your child throughout the
hospitalization.
Organized support may also be of
assistance for specific types of cancer,
including Willow Breast Cancer
Support Canada (support@willow.org).
Shanna was an artist, a skilled swimming
instructor and talented figure skating
coach with a passion for life and love of
young children. She graduated with a
Bachelor of Arts degree, Honours Visual
Arts and planned to teach at the primary
level of education. She had a kind heart,
a gentle spirit and a smile that would
radiate across the room. We miss Shan
every minute of every day. Awareness
can help. Awareness can make a
difference for other young adults.
Lorna Larsen was Shanna’s mom. She is
also the mother of two sons, Kristian and
Andrew. Lorna lives with her husband,
Rob, in Woodstock, Ontario. Lorna is a
professional public health manager and
has had an extensive public health career
in Ontario. Life changed the instant
Shanna (Shan) was diagnosed with breast
cancer and since Shan’s death Lorna has
advocated strongly to make a difference
for young adults diagnosed with cancer.
Lorna is currently Project Lead for the
Team Shan Community Project (breast
cancer awareness for young women). The
social marketing campaign (funded by
the Canadian Breast Cancer Foundation-
Ontario Chapter) will be implemented in
southwestern Ontario in the fall of 2007.
10 Network News Fall 2007

What is “normal” anyways?
I guess it’s how I looked
before I had breast cancer
surgery. My body will never be the
same, but it doesn’t matter anymore.
I feel good with my new shape and
am able to move forward now that my
surgeries and treatments are behind
me.
I actually made my decision to have
reconstruction back in 1997 when I
was first diagnosed with breast cancer
at the age of 32. Fortunately, due to
screening because of my family risk,
my cancer was caught early and it was
recommended I have a lumpectomy
followed by radiation. I later joined a
support group for younger women,
but found that the majority of the
people in my group had been through
chemotherapy and had undergone
mastectomy surgery. As most of the
discussions were about losing hair
and breasts, I felt I didn’t really fit
in. However, during one meeting the
discussion focused mainly on issues
with body image and the next thing
I knew one of the girls was lifting
up her shirt and showing all of us
her reconstructed breasts. I was not
only surprised, but also AMAZED at
how GREAT she looked. and I found
myself making the decision right
there that if I ever had to deal with
breast cancer again and needed a
mastectomy, I would definitely explore
reconstruction as an option.
In 2004 I was diagnosed again with
a new breast cancer at the age of 39.
It was in the same breast but was
more invasive this time, involving
lymph nodes on the other side as well.
I required a bilateral mastectomy,
How Will I Ever Look
“Normal”
Again?
By Pam Depres
chemotherapy and radiation
treatments. I was extremely frightened
upon this diagnosis as it was my
second time and was more aggressive
and extensive than the first.
At my initial appointment with my
surgeon, my main concern of course
was my mortality, especially being a
young mother. However, I still found
myself very concerned with my body
image and losing my breasts, and
insisting that I have reconstruction
at the same time as my bilateral
mastectomy. I knew the challenges
ahead that I needed to face and that
it wasn‘t going to be easy. I knew I
would lose my hair and my feeling of
good health for awhile. I didn’t want
to have to deal with the loss of breasts
as well. To my disappointment, it was
recommended that I wait until after
my radiation treatments had finished.
I was so angry at first. Not only was I
grieving my diagnosis, but I also didn’t
understand WHY I had to wait. So
much information was going through
my head and I was not ready to accept
it and to deal with the physical changes
to my body. After weeks of being angry
and confused, I finally accepted that I
would probably have to wait almost a
year until reconstruction would be an
option for me.
The day came for my double
mastectomy. I remember lying in my
hospital bed after surgery and feeling
anxious to face the inevitable – to look
at myself without my breasts. How
would I look? How would I feel?
What would my husband think? All
these thoughts were racing through
my head. I remember as soon as I
felt ready. I took a deep breath and
looked down. It wasn’t that bad! I was
on my way to accepting the fact that
I would look this way, but still knew
in the back of my mind it wouldn’t be
forever and that there were prosthetics
available for now. For me – thinking
this way would help me cope with my
loss and give me the strength to get
through the year ahead.
Within two weeks of my surgery,
I was at the Bra Bar purchasing
prosthetics and bras so that I would
still feel somewhat “normal” when I
wore clothing. I found when I didn’t
wear them I wasn’t as confident about
how I looked. Still, because I lost both
breasts, the prosthetics were heavy
and the bras became uncomfortable
after wearing them for an entire day. I
would look forward to coming home
and taking off my bra, prosthetics, and
wig so that I could be comfortable!
After time, I eventually felt more
secure with not having to wear my
prosthetics and wig around family and
friends, but still would “gear up” for
certain outings.
During my treatments, I still felt that
I needed to talk about reconstruction.
I had so many questions! How does it
work? How could they make my right
side look normal? It was much more
disfigured than the other side. When
I brought these questions up, I was
usually redirected to focus on getting
through the other challenges first
(chemo, radiation) and not to worry
about this. Even though this was
probably the right advice, I still needed
to talk.
At the end of my treatments, I had
learned and changed so much.
I learned about having strength
and faith, prioritizing things in life
differently, not sweating the small
stuff and “stopping to smell the roses.”
I would try to look at things in a
positive way and help others to look
this way as well. Not having hair and
breasts for awhile was worth saving
my life!
Still after learning more about what
is important in life and what isn’t,
Network News Fall 2007 11

having the opportunity to have breast
shape again was still a big issue for
me. Even though my husband always
complimented me and told me how
beautiful I was, it still wasn’t enough.
It wasn’t about not being happy inside
with myself – it was about feeling
comfortable with myself on the outside
too.
When I finally visited the plastic
surgeon who would be performing
my reconstructive surgery, I asked
him about my concern with my right
side being so disfigured. When he told
me that it would make no difference
and that everything would look great,
I felt so relieved! I wished I had seen
him at the beginning of my diagnosis.
Just to hear those words and to have
my questions answered and concerns
validated would have made a huge
difference in my emotional state during
my treatments.
I had the DIEP flap breast
reconstructive surgery in April, 2005
(a year and two months after my
surgery), and I feel great! I could wear
bathing suits and halter tops (without
a bra) all summer as I felt so much
more confident. I had such issues with
wearing summer clothing the year
before!
I look back now (two years ago) and
realize that I shouldn’t have spent so
much time comparing my new body
to the way I was before breast cancer.
I worried too much why certain areas
hurt or felt different. I wanted to look
and feel the way I was before. I finally
accepted that it takes time to heal and
feel comfortable with yourself and
your “new normal.” Even though
there are scars and scar tissue, for me
my new shape helps me feel more
confident and sexy. I have my hair
back, I have breast shape again and I’m
feeling good!
We are so fortunate to have amazing
options available to us for those who
choose to have reconstruction and to
have great people working in this field
to help us with our decision and to
make it work!
The double entendre in the title is
intended, both for its irreverent
nod to my two missing breasts
and for its respectful recognition of
the battle on two fronts facing those
of us who have both breast cancer and
a disability. We fight with weakened
resources because each condition affects
our experience of the other.
The language of disability is chronic,
the language of coping: we treat, we
adapt, and we manage. The language of
cancer is acute, the language of war: we
fight the courageous battle, we’re going
to beat this thing, and we’ll never give
up. This is clearly a murky metaphor,
but it works for me to describe my
own position between the two fronts,
solidly entrenched in a muddle of the
two languages and experiences. I cope
militantly and I fight gently.
I have Stage IV breast cancer with
metastasis to bones and liver. I also
have idiopathic chronic obstructive
pulmonary disease, COPD, complicated
by asthma and allergies. Masses of scar
tissue in my lungs and increased mucous
production leave me with only a small
percentage of normal lung function
that, combined with sensitive asthmatic
airways, result in chronic shortness of
breath. Breathing becomes even more
difficult whenever I am tired or stressed
or faced with an asthma trigger, and any
respiratory illness leaves me fighting
for breath and can require immediate
medical intervention.
My cancer has been stable for over two
years now and I have come to think
of it as my second chronic condition.
COPD is a progressive degenerative
condition for which there is no cure,
although it, too, can be held at bay.
Mine is controlled with medication and
learned coping skills, and regular threemonth
medical checks, and as long as I
am rested, well, and not under physical
Two Fronts: Breast
Cancer and Disability
By Twila Woods
or psychological stress, it is still quite
manageable. But the two conditions,
however well managed, do have a
definite impact on one another and on
my experience of both.
The diagnosis of cancer was delayed
five weeks in November, 2004 when
I was hospitalized for a week with a
severe asthma attack. I was too ill to
leave my hospital room, and I missed the
diagnostic mammogram that my doctor
had scheduled when I consulted him
earlier about some puckering on my left
breast. Although a flu bug was certainly
a major contributor to the attack, my
anxiety over the probability that the
puckering was an indication of breast
cancer may have caused an unconscious
level of psychological distress that
affected both my asthma control and my
ability to fight the flu. In this context,
my breast cancer and my disability were
mutually affective even before the cancer
diagnosis was definite.
I celebrated the New Year holiday with a
rescheduled mammogram, a biopsy, and,
a day later, a lumpectomy and auxiliary
lymph node dissection that yielded a five
cm malignant tumour and nine malignant
lymph nodes, all that were taken. My
language came to include terms like
“invasive lobular,” “the margins were
dirty,” and the phrase I was to hear over
and over again, “I have no good news
for you.” Four weeks later, I made the
first treatment choice that was, for the
most part, determined by my disability.
One breast had to be removed and, after
consultation with my doctor and surgeon,
I requested a bilateral mastectomy.
My respiratory disability puts me at
high risk for anesthetic, and having
the other breast removed at the same
time eliminated the risk of a possible
recurrence in the second breast and
the need for even more surgery. I also
decided against surgical reconstruction.
12 Network News Fall 2007

Even aesthetically, COPD affected my
experience of cancer. Prosthetic breast
forms need to be well secured to remain
in place, but because of my difficulty
breathing, I can’t stand to have anything
constrictive around my chest. The result,
of course, is a comfortable but decidedly
flat chest and a distinct pear shape
which doesn’t particularly disturb me,
but does make it challenging to find
clothes that fit.
Neither chemotherapy nor radiation
was an option for adjuvant therapy. I
learned from both my oncologist and
my respirologist that my lungs were
not strong enough to tolerate either
and there would have been serious
risk with very little benefit for me in
the risk/benefit equation. In one of my
more bleak moments I recall telling a
friend how ironic it felt to be too ill to
be treated for a disease that could kill
me. Fortunately, though, my cancer is
ER positive so I am being treated with
hormone therapy and responding well
to Tamoxifen. It is a gentle, palliative
treatment at my stage and in my
situation.
The risk of lymphedema after an
auxiliary dissection is always a concern.
I often have some truncal edema in the
area above where the scar is tight against
my ribs. I have learned how to manage
the swelling with massage but I fear,
unreasonably or not, that this could
hinder the already disrupted flow of
lymphatic fluid from my arm if I were
ever fighting infection. The corticosteroid
medications that best control my asthma
and, to a degree, Tamoxifen with its
aging affect, have caused the skin on my
arms to become thin and easily bruised
or broken, sometimes without my being
aware of it. I am never far from my
antibiotic ointment.
My most formidable challenge now is
fatigue, sometimes waves of it rolling
through me and sometimes a sudden
whomp of it that feels a little like
running into a wall and leaves me
shaking so that I need to sit or lie down
before I fall down. Breast cancer, COPD,
asthma, allergies, and osteoarthritis,
which I also have, are all loaded with
fatigue and each of them increases my
vulnerability to the impact of the others.
Like others who live with breast cancer
or a disability or both, I do what I can
to stay generally healthy, eating well
and trying to find the balance between
enough rest and enough activity.
However, reduced lung capacity,
allergies, and asthmatic airways limit
my ability to exercise. I walk in the
warm weather but am unable to walk
outside at night or in cold weather, or
in the intensely scented malls through
the winter, without greater difficulty
breathing or triggering an attack.
Chlorine is an asthma trigger for me so
I can no longer swim. However, most of
the arm and shoulder exercises for breast
cancer and for lung function are equally
beneficial to both, and also, I have begun
to buy more of the music that inspires me
to dance across my living room. Without
partner or audience, I can stop as I need
to and continue when I’m able.
A diagnosis of cancer added to a
disability certainly focuses attention
on quality of life and the necessity for
lifestyle compromises. At the time of
my diagnosis, I was a part-time student
at the University of Victoria and loving
the work. However, for many months
following my flu and asthma attack,
breast cancer diagnosis and surgeries, I
had no strength or intellectual acuity and
I felt both physically and emotionally
battered and unable to continue. I hope
to go back, although with my ongoing
difficulty with fatigue and still diminished
concentration, I am reluctant to make
the commitment. There are other things,
too, that I want to do while I’m still well
enough to do them, and both energy and
budget must be carefully allocated.
In the past two years I have been able
to travel with my husband to Scotland
to attend our daughter’s wedding, to
satisfy a life-long desire to spend some
time in Andalusia, and to spend a lovely
Mother’s Day weekend in New York with
my two daughters, a good friend, and
her daughters. Long-distance travel itself
is difficult and exhausting and my travel
plan must include an increase in asthma
medication and opportunities to rest and
recover. “Wheelchair in the airport” is
part of my language of disability now
and the condition on which I’m able to
travel; I have finally accepted my need
to book one when I book my ticket.
Because I am so quickly exhausted and
increasingly physically intolerant to dutyfree
perfumed air and the low quality,
partly recycled aircraft air, I can no longer
make it through a large airport on foot.
It seems like wishful thinking to call
myself well when I live with these two
threatening chronic conditions, but
it feels melodramatic and attentionseeking
to discuss them or call myself
ill when I feel so well, for the most part,
and have no pain. I am somewhere in
between and learning the many layers
of meaning in the language of the “new
normal.” I choose to think of myself as
well, for the moment I’m stable in both
conditions, and I’m enjoying my life.
Last year my husband and I celebrated
our fortieth anniversary with a party and
we’re looking forward to having another
when we reach our fiftieth. Since my
cancer diagnosis, family and friends have
enclosed me in a caring circle and I have
come to feel charmed, protected from
harm. Breast cancer survivors themselves,
Jan, Judith, Marlene, and Carol, have
lit my way through the labyrinth and
listened patiently when I’ve said all these
things before. I cope mightily and I fight
gently, but not alone.
Twila Woods was born and grew up
in Manitoba and met her west-coast
husband, Cal, when they were both
working in Yorkton, Saskatchewan. Cal
was a member of the RCMP and Twila
enjoyed the adventure of meeting new
friends and finding new opportunities
for personal growth through postings
in Regina, Vancouver, Fort Smith,
Yellowknife, Edmonton, and Prince
Albert, working in television writing,
producing, promotion, and sales along
the way. She just as happily settled in
Victoria when she and Cal took early
retirement. They have four children
and five grandchildren. Twila is in the
process of becoming a volunteer with
the CancerConnection program through
the Canadian Cancer Society.
Network News Fall 2007 13

My Experience with
Inflammatory
Breast Cancer
By Debbie Duerden McDonald
Even though breast cancer is becoming
much more curable for most women
who are diagnosed, it is a disease that
is frightening for anyone to contemplate.
No one ever wants to hear the words
“You have breast cancer.” In my case, as
a family doctor, I sometimes had to be the
one to tell a woman she had breast cancer,
and it was definitely hardest when the
woman was close to my age.
One 34-year-old patient in particular
stands out in my mind. In 2000, I was
just a bit younger than her when I had
to break the news that she had breast
cancer, and it was devastating. She had
two young children and was thriving in
her job. Faced with her life-threatening
diagnosis, she made some significant life
changes and also became an advocate for
breast cancer education. I was impressed
by her courage and remember distinctly
thinking “there but for the grace of God
go I.” Little did I know how prophetic
those words would become, even when I
changed my licence plate to read “Carpe
Diem” (seize the day).
My patient succumbed to breast cancer
after five years of fighting as hard as she
could. Before she died, I was able to tell
her that she had a profound influence on
me and that I would always remember
her. Her example taught me to make sure
that I was living the life meant for me.
She helped me realize that I needed to
make some significant life changes of my
own, including a divorce from my first
husband. In October 2002, I met the love
of my life (now my husband) and I thank
her for showing me that life can be too
short to wait for things to change.
Just over two years after she died, in April
2006, after about a month of noticing
unusual changes in my left breast, I heard
the words “You have breast cancer.” I was
41-years-old and my situation was (and
still is) terrifying: I have a particularly
aggressive form of breast cancer called
Inflammatory Breast Cancer (IBC), which
presents rapidly, often without a lump,
and is not subtle. My left breast swelled
painfully, with a bright red rash that
looked like sunburn and dimpling of the
skin (called Peau d’Orange because it
resembles the peel of an orange).
When I was diagnosed, my IBC was
already at Stage IV (the worst). I had
metastases to my liver, spleen and bones.
My liver stretched across my abdomen,
about twice its normal size, and the initial
abdominal ultrasound showed liver
lesions “too numerous to count.” It took
me a long time before I could look at my
first CT scan. In fact, I waited until I had a
second CT scan that showed improvement
before I would look at the first one.
After the initial shock and panic had time
to sink in, for some reason I did not think
“Why me?” as much as “Now what?” I
had been in the military, through some
pretty rigorous basic training, so I felt that
I could be strong. I decided to fight the IBC
as hard as I could. I even labelled myself
“Debbie Princess Warrior,” after Xena, the
television heroine. My partner Jamie asked
me to marry him and I continued my
journey into IBC territory with him by my
side. Friends, family and co-workers joined
to support me along the way.
I went public shortly before my wedding
in July 2006 to try to raise awareness of
IBC, which is quite uncommon. I e-mailed
a local newspaper and television station
and was contacted to do a local radio
interview for CBC Mainstreet. I think this
is something I might not have done if I
had been older, because I might have felt
more self-conscious or ashamed of the
disease.
I have learned that for me, going public
to help others by increasing awareness
of IBC has helped me to cope with this
formidable disease. The support of my
friends and family has been invaluable.
In November 2006, three friends and I
dressed in full Pink Warrior Princess gear
to attend the annual Titz’n Glitz function
in Halifax. I had been asked to speak at
the event, and my talk focused on helping
each other out. Although the reason
for the event was sombre, it felt like a
celebration of life, with all its challenges.
Going public brought some interesting
results. A lot of old friends, former
patients and co-workers contacted me
to offer support, which was amazing.
However, there was a very difficult side
to it as well. I remember two women who
contacted me, thanking me for bringing
attention to IBC, which is so different
from “usual” breast cancer. They were
happy to know that they weren’t alone.
Unfortunately, both of them died within
months of telling me their stories, before
we even had a chance to meet. One
woman was in her thirties, with young
children, and I remember feeling helpless.
The gravity of my own situation sunk in
even deeper.
This was not what I was expecting at
42-years-old. I was looking forward to a
long life, perhaps drifting into Alzheimer’s
disease like my paternal grandmother, or
gradually succumbing to “old age” type
problems, like my maternal grandparents.
If breast cancer hit, it was supposed to
be the type you hear about being caught
early by mammogram and with a great
cure rate. Even that would have been
devastating enough, but my case is a
good deal different. But, I have no choice.
This is how it is. As my 97-year-old stepgrandmother
says, “It is what it is.”
Even though I still battle this disease and
have been told there is no real chance for
a cure, I consider myself lucky in some
ways. I am young enough that I can
tolerate many of the treatments better
14 Network News Fall 2007

than I probably would if I were older,
and I am outspoken enough to push for
more aggressive treatments than a person
in my situation might normally receive. I
also have access to lots of information via
the Internet that simply wasn’t available
too many years ago. I have to admit that
my younger husband has done most of
the research, since he’s more computer
savvy and I just couldn’t do it myself,
especially at first. My medical background
has helped me weed out some of the less
useful information and it helps me cut
through a lot of jargon during medical
appointments. I am also lucky that medical
treatment has advanced from where it
was even five years ago, so that I seem to
be responding to treatments in a positive
way. Potential side effects from treatment
are taken very seriously, so that they can
be minimized as much as possible.
My course of treatment was as follows: I
had chemotherapy from April to August in
2006, and then took medications to put me
into menopause. This kept the IBC at bay
until December 2006, when my left breast
began to swell again. I had a Left Modified
Radical Mastectomy (L-MRM) in March
2007, followed by 20 sessions of radiation
therapy. In April, the lymph nodes under
my left collarbone began to grow, and I
began a different chemotherapy in May
2007. I also started 10 more sessions of
radiation therapy in June 2007.
In the meantime, I have tried to keep
living as fully as possible: why fight so
hard to live if I don’t “Seize the Day?” I
haven’t worked since I was diagnosed,
because I can afford not to, since I was
hounded enough by a persistent Disability
Insurance salesman to purchase expensive
private disability insurance (and yes, I
thank my lucky stars for him!!!). And if
I’m going to die soon, I want this to be my
retirement. I figure that if things work out,
I can always return from early retirement!
Our wedding in July 2006 was a true
celebration of life. We were surrounded
by loving friends and family, delicious
food and a live band, with dancing
until the wee hours. In lieu of gifts, we
asked people to donate to the Canadian
Breast Cancer Foundation. I wore a long
cashmere scarf with the pink ribbon
on it, and our disposable cameras were
from Avon’s breast cancer campaign,
but otherwise, breast cancer almost took
a back seat that day. It might have been
easier had I had hair!
My husband and I went on our first
cruise together in September 2006 for
our honeymoon. We got excellent prices,
probably because of all the hurricanes the
previous September. We only had one
rough sea day – the rest of the trip was a
blast.
I feel like I am at an “in-between” age, so
that some of the realities of aging were
beginning to make their presence known
before my diagnosis. However, I was
at a really good place in my career and
in my life, and hadn’t yet let go of the
sense that I had all the time in the world.
That changed quickly the day I heard my
diagnosis.
There are things about being young with
breast cancer that make it especially
difficult. Many of these things are obvious,
and perhaps not unique to being younger,
such as, “Will I see my 15-year old son
graduate from high school?”, “How will
my husband cope if I die?”, and “Is my
will going to be adequate to ensure that
my needs are met?” But some of them are
more quirky: “Why did I spend so much
time putting money into RRSPs if I may
never get to use them?”, “Is putting on so
much weight from chemo good for me?”
and “What the heck do I do with one
breast in public? Am I old enough that
people don’t look or do I have to provide
a substitute?” and “Why don’t I FEEL like
I have a terminal disease… is it possible I
can beat this?”
I guess no matter how old we are or
what challenge we are faced with,
we usually have some measure of
choice in how we cope. I really believe
that there’s something to be said for
positive, proactive realism: the kind
that makes you learn about all of your
test results so that you know exactly what
you’re dealing with (when you’re ready –
I certainly wasn’t ready immediately); find
out about all of the available treatments
you can find; drill your medical team with
questions about things they may not have
heard about and expect them to report
back after they’ve done their research;
gather all the positive support you can
find – inner and outer, and then take some
time to stop and smell the roses. We all
end up the same way in the long run.
Sometimes that’s the thing that makes me
stop short and recognize that it’s not how
you die, it’s how you LIVE that’s so vital!
I was born and raised in Halifax, Nova
Scotia. Always the energetic Aries, I
graduated from Dalhousie Medical School
the day after my son was born. I served
as a Canadian military physician, ending
my term of duty after working through
some of the Swiss Air crash aftermath
in 1998. I then went into private family
practice for five years, after which I joined
Dalhousie University’s Department of
Psychiatry, where I worked until I was
diagnosed with Inflammatory Breast
Cancer in April 2006. Since then, I’ve
focused on looking after my health and
trying to increase awareness of IBC.
Network News Fall 2007 15

Celebrating
L i f e
By Chris Ross
“I’m having a party,” I informed my
husband in November of last year.
“A party?” he responded. “You’re not
up to throwing a party!”
“Not right now I’m not, but I’m having
one heck of a party when this craziness
is behind me!”
And I did. On Sunday, June 24 of this
year, Peter and I hosted a “Celebrating
Life – Yours and Ours” BBQ for one
hundred plus family members and
friends of all ages. It was magical! The
lilacs were in full bloom and they put
on a stunning show while our guests
drank in the fragrance that wafted
over them. The skies, which had been
threatening rain and making good
on that threat with intermittent sun
showers, cleared to a vibrant Mariner’s
blue. As our remarkable, unfailinglyloyal
family, friends, and students
and their families poured onto our
property, I was there to hug each and
every one and to tell them how much
they have meant to me, especially
during the past ten months. I am
beholden to this network of people
from points around the world who
reached out to me and held me up.
Any strength of character and peace of
mind I have is for the most part due to
them.
When I was told by my family doctor
in September, 2006 that the breast
biopsy performed in August revealed
cancer, it wasn’t a huge shock. My
right breast had been “wonky” for
nearly 13 years. I was examined by
approximately ten doctors by 2006,
including a breast surgeon and a
radiologist who performed two
ultrasounds. When I discussed with
them performing breast self-exams to
become familiar with my breasts, I was
always at a loss about what to judge
as “normal.” I’d declare, “My girls are
complete strangers to me! Why is the
left one so supple and the right one so
lumpy and dense?” I was concerned,
and for good reason.
My mom, Inez, died from metastatic
cancer in 1987. She chose not to
share her pathology reports with her
children (three daughters and one
son), but we later discovered that her
metastatic cancer was so advanced that
the report stated that the origin of her
cancer was unknown. I decided to err
on the side of caution and surmised
the cancer had originated in her breast.
I became proactive about my own
breast health, requesting and receiving
a base-line mammogram in 1990.
A second mammogram was ordered
in 1994 after I discovered a lump in
the areola of my right breast, directly
above the nipple. The breast surgeon to
whom I was referred in 1995 advised
that the lump was not a concern and
that the needle biopsy I requested was
unnecessary. A 2001 mammography
was reported as normal, but the
nagging suspicion that my right
breast was far from normal weighed
heavily in my mind. By 2004 the
lump in my right breast had grown,
and the area above it felt like thick,
fibrous, striated tissue. My family
doctor (the fourth in 16 years due to
a turnover of physicians at our local
medical centre) ordered an ultrasound.
The radiologist who performed the
ultrasound reported “no solid or cystic
lesions demonstrated in either breast,
no primary or secondary signs of
malignancy in the right breast.” But by
2006, I was a fortress under siege and
the enemy was cancer.
A 2006 mammogram revealed “the
focal asymmetric density in the
right breast appear[ed] not readily
classifiable as benign or malignant;
additional views with possible
ultrasound recommended for the focal
asymmetric density.” Following up
on that recommendation, my family
doctor ordered an ultrasound of the
right breast. The same radiologist who
had conducted the 2004 ultrasound
executed another and reported that
it “fail[ed] to demonstrate the lesions
seen on the mammogram suspicious of
malignancy [and] surgical consultation
and, if necessary, [a] biopsy [was]
recommended.” My doctor examined
my right breast again and stated that,
in her words, one of the lumps “just
didn’t feel right.” On her orders,
and in an ironic twist, on my 50 th
birthday I had another mammogram
and ultrasound at the region’s breast
clinic. A month later a biopsy was
completed and the resulting diagnosis
– “ductal infiltrating carcinoma of the
right breast” – was conveyed to Peter
and me with great compassion and
tenderness by our family doctor.
Within a week, I shared the diagnosis
with family, friends and the parents
of the children I tutor. I wanted to
cushion the blow by ensuring they
heard the news directly from me. Also,
as anxious as I was, I wanted them to
know that I was fighting for my life,
and that I needed an army of friends
to fight with me. To a person they and
literally hundreds of others joined me
on the front lines as I marched into the
breach.
The first battle came early on in the
war. I was referred to the surgeon I’d
seen in 1995 and told him I wanted to
be aggressive and have a mastectomy.
His advice was that the carcinoma,
as well as the lump from before,
could be removed through the more
conservative lumpectomy surgery. I
consented. The post-operative report
16 Network News Fall 2007

did not allude to a second mass;
however, I was told at the postoperative
consultation that the lump
in the areola above the nipple was
DCIS. Battle number two: there was
no question in my mind, nor has there
ever been since that moment, that I
would have a mastectomy of the right
breast and a prophylactic mastectomy
of the left breast. It was the right
course of treatment for me, the only
choice, and I knew it, but I had to
“prove” that I was fully aware of what
I was requesting.
Peter, my buddy Joan, and my Nurse
Case Manager and I brought out the
big guns for the ensuing discussion
with my physicians. I was adamant
that the bilateral mastectomy was
the only option that would make me
confident I was doing everything I
could to lick this disease. I especially
knew I’d made the best choice
when the post-bilateral mastectomy
pathology reported a third tumour
in the excised right breast tissue.
If I’d conserved my left breast, I’d
have fretted for the rest of my life,
however long or short it might be
that the cancer would recur there. But
the bilateral surgery, a chemotherapy
regimen of four A/C every second
week, followed by four Taxol every
second week, some rugged battles
against pain waged and won during
that time, and my much-loved friends
who give me hope for tomorrow
have allowed me to be tremendously
optimistic about my future.
In April of this year, my cousin on my
mother’s side phoned me to ask how
I was feeling. Although we share a
mutual friend, it was the first contact
I’d had with her in a few years. What
she said knocked me for a loop: not
only had she survived breast cancer,
something I hadn’t known, she knew
at the time that Mom had breast cancer,
even though my sisters and I didn’t
know it. (I can’t speak for my brother
as he died from pancreatic cancer in
2000.) I also learned that our aunt was
a survivor. I immediately passed the
information on to my nieces, along
with a plea that they be aggressive
regarding their breast health. I believe
if there was a national registry of
breast cancer patients, one that family
members could access, I wouldn’t have
fallen through the medical cracks as
it were, a thing not easy to do for a
gregarious 82 kilogram woman!
By the way, if you’re curious as to
what we ate at the BBQ, I kept the
fare simple: homemade potato salad
and coleslaw, hamburgers, hot dogs,
veggie burgers, turkey burgers, water,
juice and cake. And what a cake it
was! A huge slab of butter pound cake,
topped with butter icing on which
was piped a breast cancer ribbon and
the word “Yippeeeeeeeeeeee,” the very
word I’d used in March to let everyone
know that the chemo treatments were
We are all paddling through the pain
By Clare Barry
finished and I was back in action. My
life truly is a do-over. I am blessed
with the world’s best friends and
am grateful for having a take-charge
attitude. Indeed, I am grateful to be
one of the lucky ones.
Christine Elizabeth (Hawthorne)
Ross (Miss Chris) is thriving in New
Brunswick, along with her husband
Peter and their four-legged children,
Abby-dog and Mme. Souris-kitty.
Chris and Pete are blessed with
several dear nieces and nephews, the
world’s truest, most generous, loving
and fun-loving friends and, through
Chris’s work as a private tutor/mentor,
perfect, brilliant-all students whom she
declares have taught her more about
life than she has ever taught them.
We are all paddling through the pain.
Some of us have paddled longer and further.
Others are beginning the journey.
Some have taken a first step into the dragon boat.
Some can paddle no longer.
The stroke seat sets the rhythm and timing……… in together, catch
together…………
Eyes up…………ready and reach……
We have all faced the white bone truth of reaching for life,
choosing life with our eyes focused up and forward.
One great truth holds through all this…
We need each other.
The boat is only as steady as the occupants, aware of each other, mind and body.
Without unity there is no forward motion, no surge through life,
no race to the finish, no dock to rest at safely.
The heart of the dragon can only beat with strength if
we are all pulling together, supporting each other.
Let us not lose sight of our purpose and our inspiration.
My name is Clare Barry and I am a 2 year “survivor.” I am a member of the
Island Breaststrokers Dragon Boat Team and wrote this poem last year when I
first started paddling. Being in the boat with so many incredible women has been
an inspirational experience. The words “LIFE,” “HOPE,” “STRENGTH,” and
“SPIRIT” screamed loud and clear as I watch these women of all ages move on
through life with determination and a positive outlook.
Network News Fall 2007 17

My name is Deb Cooke. Although I receive news from the Canadian Breast Cancer
Network Outreach Newsletter, I am indeed a Canadian at large, living in Scotland.
After a long stay in Yellowknife, NT, (which I miss dearly), we relocated to Inverness,
four years ago, to have an big adventure and be closer to my husband’s home. Though
we thought of being here for only a few years, this has changed due to the fact, we
absolutely love it and feel settled once again the north, but this time, in the Scottish
Highlands. Unfortunately, my breast cancer, (I was diagnosed in 2000, at the age of 40),
has also played a factor. It recently metastasized to my bone marrow. As a result, my
husband (who speaks with a thick Scottish accent) and I, continue to make the most of
everyday, enjoying living on a farm surrounded by sheep, cows and our veggie patch.
Meanwhile, I have immersed myself in art and try to feed my soul.
Holding On
By Deb Cooke
Holding on
Hand and hand.
Our grip
Solid,
Tight,
Unwavering and
United.
Holding on
To each other,
For strength,
Comfort and
Protection.
Its getting
Harder
For both of us.
Holding on
To time.
Every minute counts,
But they are slipping
Away
Too quickly.
Holding on
To hope.
Grasping,
Clinging,
To what?
I’m not sure,
It’s not clear enough.
Holding on
For dear life.
I love it,
I want it,
Forever
And
Ever.
May 2007
How will you remember me?
With a bald
Round
Head?
Sunken eyes,
Ravaged
And dimmed
By the barrage
Of drugs?
Will you picture me
Lying on the couch,
Unable
To jump up
With all my
Heartfelt joy,
To welcome you home
After a day
Of work?
Will you only picture
Me
Climbing the stairs
Like a woman
In her late old age;
Slowly,
With no energy
Or stamina?
Remember Me?
By Deb Cooke
I am afraid
You
Will only remember
Me
In this disease
Ridden
Body,
And forget
Just who
Is inside.
It’s Me!
In here!
My heart,
My soul,
Still
Thriving,
Still
Breathing,
As I always do,
With Life
And desire,
And determination.
I am
Full
Of happiness,
Contentment,
And joy,
Being your partner
And being
Me.
Remember,
I am
More than
My body;
This shell.
I am deeper
Than
That.
Always remember
Me,
There is no one like me
Inside or out.
I have
Heart.
I’m full
Of love
For you,
For my Lord,
My family
And for
Life.
May 2007
18 Network News Fall 2007

Checking It Out:
The Challenge of Raising Breast Health
Awareness with Young Women
Diane Buhler, Executive Director, Parent Action on Drugs
“Health is much more than the absence
of disease” – this is an apt piece of
wisdom when it comes to the issue
of breast cancer. Health promotion
strategies enable people to increase
control over and improve their health.
But how do these accepted tenets
translate when we are focusing on girls
and young women? A more appropriate
reference might be the 90’s song, “Girls
Just Want to Have Fun.” The answer is:
it’s a challenge, but one that is doable
and necessary!
In 2005, Parent Action on Drugs (PAD)
received funding from the Canadian
Breast Cancer Foundation – Ontario
Chapter to work in collaboration with
youth and health promotion partners
in English and French communities in
Ontario on an assessment and planning
project called Check it out/A voir. The
project was to find out what young
women, ages 16 to 20, think about
alcohol, nutrition and physical activity
and the risks for breast cancer.
Project Background
Our route to this project was somewhat
circuitous. As an organization concerned
with issues around youth and their use
of alcohol and other drugs, we have
spent more than two decades meeting
and discussing with youth ways to
decrease the harms and problems
associated with their drinking and drug
use, and giving them the information
to make their own decisions about this
issue. Our concern with young women
and their use of alcohol, in particular,
began around 2000, when surveys
revealed young men were showing
significant decline in both their drinking
prevalence as well and their heavy
drinking patterns. Young women were
not. The 2005 Ontario Student Drug Use
Survey reported that young women ages
16-20 were drinking at levels identified
by the World Health Organization as
hazardous, meaning already impacting
their health, with nearly 30% of girls
in Grades 11 and 12 in Ontario were
drinking at hazardous levels.
At the same time, our work with young
women showed that they were concerned
with gender specific information – both
physiological and social-emotional.
Women process alcohol somewhat
differently than men. This impacts on
their levels of intoxication as well as their
potential for chronic diseases.
By 2003, the link between alcohol and
breast cancer had emerged, with studies
by Babor et al and Aronson showing
alcohol as a risk factor for breast cancer.
When we put this information forward
to young women, they were very
surprised – but interested. In a note
of disclosure, many of the associates
at Parent Action on Drugs are female,
mothers of young women, and (like so
many others) have personal and family
concerns with breast cancer. We felt a
need to get this information out to our
audience of concern – young women,
and particularly, young women drinkers.
An original submission to the Canadian
Breast Cancer Foundation – Ontario
Chapter was rightly met with the
response to do our homework! We
needed to consolidate our partnership
with young women, expand our
concerns to other lifestyle issues which
have a relationship to disease prevention
and increased health, and connect with
organizations with established credibility
in the field of breast cancer support and
prevention. The connection we were able
to establish with the Canadian Breast
Cancer Network (CBCN) has been most
helpful as we have proceeded with this
work. But most of all, we needed to
find out whether young women were
interested in the link between breast
cancer and lifestyle issues. And, if so,
what are the best avenues to reach
them and what formats will provide
information to them in a way they will
accept?
Assessment and Planning Project
With a small “Assessment and Planning”
grant from the Foundation, PAD
was able to work with a project team
representing physical activity, nutrition
and alcohol concerns, as well as CBCN
and young women themselves. Together
we developed an assessment tool to
ascertain young women’s interest in
and knowledge of the impact of alcohol,
nutrition and physical activity on the
risks for breast cancer and on breast
health. A key part of the project was to
assess young women who were both
in high school and post-secondary
situations in Ontario, and to provide all
assessment tools in both English and
French. Following the participation of 40
young women in four focus groups, we
developed an on-line survey and then
proceeded to disseminate it through
schools, health promoters, web links,
networks, word of mouth – by any means
we could! We asked questions about their
perceptions of their current use of alcohol,
levels of physical activity, and eating
patterns, their expectations about these in
five years for themselves and their peers,
their knowledge of the three different
lifestyle connections to risks for breast
cancer, their interest in these links, and
how they would like to see information
presented to make it meaningful to
them and their peers. The analysis of the
information from the survey presented
us with fascinating information. We
provided space for comments as much as
possible in order to hear what they had to
say, in their own words.
Network News Fall 2007 19

Survey Results
Respondents
• 355 young women, evenly distributed
across the age range (16 – 20)
• The largest representation was
from Toronto and the South West
of Ontario, but all regions were
represented
• The completion rate was 75%, despite
the length of the survey
• Only 8.6% used the French language
survey, which may be accounted for
by the bilingual capacity of many
Francophones in Ontario
• 29% reported having a close relative
with breast cancer
Lifestyle and Attitudes
• Included drinkers and non-drinkers
(16%)
• Drinkers reported they drink “a lot,”
but aren’t worried about it and don’t
plan to change
• 81% saw “heavy drinking” as a
pattern in their age group, but not
their own drinking
o I think I’m in the safe range
o When I do decide to “party” I
make the most of it
o I’m young and want to have fun
• 80% saw reduced physical activity as a
pattern with women their age
• 2/3 felt they should be more
physically active
• Large majority saw poor nutrition as a
pattern for their age group
• Large majority saw their nutrition and
physical activity patterns improving in
five years
Lifestyle Factors and Increased Risks
for Breast Cancer
• They knew more about the links with
physical activity and nutrition than
alcohol
• 51% had not heard of the link with
healthy eating, 68% had not heard of
the link with physical activity and 84%
had not heard of the link with alcohol
• More than 80% rated the information
as important
• They would be interested in getting
this information if it gave them
lifestyle choices
• They felt that breast cancer survivors,
peers, mothers and teachers would
be appropriate for conveying the
information
Challenges for the Message and
the Messenger
Although the project team feels it is
important to respond to the results of
the assessment project with a program
for informing young women about
the links between lifestyle factors and
breast health, we recognize the many
challenges in doing so. At the forefront
is the fact that breast cancer is a chronic
disease, a delayed possibility, one that
is in the future and does not impact the
immediate world of young women. The
possible negative consequences of their
current lifestyle choices are too far off to
have an impact, and young women are
not willing to compromise their fun:
Breast cancer seems very far away in the
future, so one night at a party is not going to
impact it.
Women my age don’t listen to anything. We
want to do our own thing.
Young women are cautious and
distrustful of propagandizing. They want
to have “proven links:”
I have never heard of this correlation
The facts are not proven enough by scientists
Je voie pas le lien entre l’alcool et le cancer
du sein
The concept of risk is difficult. We
are not positing a directly causal
relationship between one thing and
another – rather an increase in the
potential to get breast cancer. And
even with the current evidence there
are many unanswered questions about
whether the relationships with alcohol,
eating patterns and physical activity are
different for women at different stages
of their lives, different for those who
already have breast cancer and multiple
other variables. The issue of cancer itself
is one that invites denial – “everything
causes cancer anyway,” is a phrase we
heard very often.
Finally, we are sensitive about how
possible messages could turn into a
‘blame the victim” type of mentality. We
know people with breast cancer who are
overweight, or not that physically active,
or who drink alcohol a little or a lot. We
also know people with breast cancer who
“did everything right.” And we know
that’s not why – or why not – they got
breast cancer.
Breast cancer seems
very far away in the
future, so one night
at a party is not
going to impact it.
Moving Forward
Such challenges do not abnegate our
responsibility as health promoters,
mothers and caring adults to provide
information to young women.
As Diane Karnay, a member of the Pink
Tulip Foundation, a new charitable
organization of breast cancer survivors,
mothers and other women concerned
with breast cancer prevention, states:
“I believe that it is important to reach out to
girls and young women on a prevention vein,
because without knowledge and awareness of
the factors that increase breast cancer risks,
and the factors that decrease such risks, there
is less opportunity for these girls and young
women to make informed lifestyle choices.
Although it is possible to make lifestyle
changes at any time, establishing a healthy
lifestyle early in life carries with it a greater
potential for a healthy life, free of cancer
(and other diseases). Since cancer is touching
great numbers of our population all the time,
these girls and young women are curious and
puzzled – what can they do to minimize their
own personal risk? And the adults involved
in these girls’ lives want them to have the
answers.”
The Planning and Assessment Survey
provided us with a clear message that
despite the challenges, it is necessary to
move forward. Clearly, young women
20 Network News Fall 2007

want to maintain a healthy lifestyle.
Gaining information allows them to
make informed choices. Our messages
should be non-judgmental of their
current lifestyle and show confidence
that they will act in their own best
interest. We need only to listen to
young women’s recommendations:
• This information aids in my decision to
watch the amount of alcohol I consume
• Express the fact that lifestyle changes
are easy and not to panic
• Focus on how it can be prevented
• Have more “maybe” options instead of
just yes/no
• Just talk about the importance of
healthy lifestyles
• Let the young women ask the questions
they want to know
• Start the education early, so that we
can have a chance to make the right
lifestyle choices from an early age
Rebecca Brown was an organizer of
and participant in one of the focus
groups held for Brock University
students in 2005, when she was
19 years old. She was surprised at
how candid her peers were in the
discussion, particularly around
what constitutes “heavy” or “binge
drinking” and their concerns about
feeling pressured to drink a lot.
For her and her peers, five or more
drinks on a single occasion was the
norm at that stage in their lives. The
opportunity to talk openly about
drinking and other health and lifestyle
issues was illuminating. Now, at age
21, she says, “I personally can’t speak
for the others [in the group], but I
have chosen not to drink as much.
That’s not necessarily linked to a
specific health hazard -- maybe it’s a
result of getting older.”
Young women have the capacity to
understand complicated information
and learn from each other, to check
out their choices and their behaviours
– as long as it made clear to them that
this information is important for their
lives and their futures.
We can provide an early start for
breast health.
Finding reliable
health information
to support decisions
By Cheryl Arratoon, Knowledge Broker,
the Canadian Cochrane Network and Centre
Making decisions and choices
about your health care can
be difficult, with profound
consequences for yourself, family and
friends. It is therefore important to
consider the best knowledge available.
In this information age it is up to you
to be aware that information comes
in different forms and is not always
reliable.
So what are you supposed to do?
The Cochrane Collaboration is an
independent information source
that you may want to explore. The
Cochrane Collaboration prepares,
maintains and promotes systematic
reviews of the effects of healthcare
treatments. Our reviews answer
questions such as, “What treatment
options do I have?” and “What are
the benefits and harms of these
treatments?” For example, one review
examines how effective Chinese
medicinal herbs are in relieving
the side effects associated with
chemotherapy. Abstracts of reviews
related to breast cancer can be found at
http://www.cochrane.org/reviews/
en/topics/52.html.
Why is Cochrane a reliable source of
reviews?
Systematic reviews synthesize the
research available on a topic using
strategies that limit bias and random
error. Because they summarize, or
sometimes pool the results of many
studies, they are less biased than
relying on the results of one individual
study. We have a strict conflict of
interest policy about involvement by
industry in our reviews. Cochrane
reviews are based on extensive searches
of the literature, and we are regarded
as the leaders in developing the
methodology for systematic reviews.
The majority of the people who make
up the Collaboration are not paid to
review the literature, but are enthusiasts
who recognize the urgent need to
provide accurate, updated information
so that ultimately patients may receive
the best available treatment.
Your input is important!
The Breast Cancer Review Group is
currently looking for women who have
personal experience of breast cancer
who would be interested in working
with them and contributing to the
protocols and reviews they produce.
Your input on Cochrane reviews is
vital to ensuring that the perspective
of the patient is brought forward. For
anyone interested in contributing we
can provide some mentoring with
experienced consumers as a learning
tool.
Please look at the Breast Cancer
Group website for more information
Network News Fall 2007 21

about what we do http://www.ctc.
usyd.edu.au/cochrane/index.html.
The Cochrane Consumer Network
website also provides information for
consumers wanting to get involved
with The Cochrane Collaboration
http://www.cochrane.org/consumers/
sysrev.htm. If you would like to find
out more, please contact Sharon Parker
sparker@ctc.usyd.edu.au.
Some recent Cochrane reviews
Treatment
Sequencing of chemotherapy and
radiation therapy for early breast
cancer
The issue: Chemotherapy and
radiotherapy are usually performed
after surgery for early breast cancer,
but there is uncertainty as to whether
they should be issued at the same time,
or one after the other. The concern is
that the effectiveness of the treatment
could be affected.
What the evidence says: This review
included three well-conducted
randomized trials (1097 women total)
evaluating the order of treatments on
survival, distant metastases or local
recurrence. Results suggest that the
chance of the cancer returning, as well
as the overall patient outcome, remains
roughly the same regardless of the
order given.
Positive chemotherapy for women
with operable breast cancer
The issue: It is believed that the early
introduction of treatment before
surgery can shrink tumor size, making
it easier for physicians to perform more
breast-conserving surgery on patients.
This review evaluated the effectiveness
of preoperative chemotherapy in
women with operable breast cancer
compared to chemotherapy given after
surgery.
What the evidence says: The results of 14
randomized controlled trials involving
5,500 women, showed no major
difference in survival rates for women
receiving either forms of treatment.
However, adverse effects such as
cardiotoxicity and serious infection
occurred less with preoperative
chemotherapy. It also makes more
breast conserving surgery possible
due to shrinking the tumour before
surgery.
Support after treatment
Chinese medicinal herbs to treat sideeffects
of chemotherapy in breast
cancer patients
The issue: It is not uncommon for
cancer patients to practice alterative
medicine to relieve side effects
associated with chemotherapy. This
review assessed the efficiency and
safety of Chinese medicinal herbs in
alleviating these ailments.
What the evidence says: The results
are based on seven low-quality
randomized controlled trials involving
543 participants. Using six different
herbal remedies, each study compared
using Chinese medicinal herbs
with chemotherapy against using
chemotherapy alone. The limited
evidence suggests that herbs with
chemotherapy or Chinese medicinal
herbs alone may enhance marrow
suppression, immune system function
and quality of life. More research is
needed to determine whether they are
safe.
Exercise for women receiving
adjuvant therapy for breast cancer
The issue: Exercise is becoming more
popular among breast cancer patients
as it is thought to help manage
treatment-related side effects. This
review evaluated the effects of physical
exercise on women receiving adjuvant
therapy for breast cancer.
What the evidence says: Included were
nine controlled clinical trials of 452
patients who practiced aerobics,
resistance training or a combination
of both. Results suggest that exercise
improves physical function, even
during cancer treatment, thus
improving the capacity to do activities
of daily life. There is still not enough
evidence about the effects of exercise
on things such as fatigue, immune
function, or weight gain. Adverse
effects (lymphedema and shoulder
tendonitis) were observed in two trials.
Predicting risk
Cancer genetic risk assessment for
individuals at risk of familial breast
cancer
The issue: The recognition that there
is an inherited component to breast
cancer has led to an increase in
demand for information, reassurance,
and genetic testing, resulting in the
creation of genetics clinics for familial
cancer. The first step for patients
referred to a cancer genetic clinic is a
risk assessment. This review assessed
the effect of genetic risk assessment
services on those at risk of familial
breast cancer.
What the evidence says: This review
is based on the results of three trials
of 1,252 participants. The analysis
suggests that these services, such as
counseling, specialist screening and
genetic testing can help to reduce
distress, improve the accuracy of the
individual’s perceived risk of breast
cancer and increase knowledge about
breast cancer and genetics. As yet,
there is limited data to determine the
best way to deliver these services, as
well as who should deliver them.
Follow up strategies for women
treated for early breast cancer
The issue: Follow-up examinations
are commonly performed after
primary treatment for women with
breast cancer. They are used to detect
22 Network News Fall 2007

ecurrences at an early stage
before symptoms are apparent.
However the effect of different
strategies on mortality,
morbidity and quality of life is
unknown.
What the evidence says: Four
RCTs involving 3,055 women
with breast cancer (clinical stage
I, II or III) were examined. The
review found that follow-up
programs based on a regular
physical exam and yearly
mammogram appear to be as
effective as the more intensive
approaches that include tests
such as liver scans, tumour
markers, chest X-rays and blood
and liver function tests. This
was measured by detection of
recurrences of cancers, overall
survival and quality of life.
Cheryl Arratoon spent
several years doing bench
and policy research after
graduating with an
MSc. During time at
home with her children,
through volunteer work
in schools and women’s
health organizations, she
realized her interest in
communicating health
information to non-scientists.
She then spent 10 years at
the Canadian Agency for
Drugs and Technologies
in Health where she held
various management
positions leading production,
communications and
knowledge transfer activities
and CADTH’s national
liaison outreach program.
In her current role with the
Cochrane Centre, she works
with health professional and
patient groups to increase
the use and understanding of
Cochrane reviews.
If you have cancer and feel
fatigued, you’re not lazy, or crazy.
And you’re certainly not alone.
About four out of five cancer patients
experience fatigue, described as a
“total lack of energy” or “extreme
tiredness” that does not go away,
even after rest or sleep. The problem
of fatigue, and the number of patients
it affects, is significant. Almost nine
out of 10 cancer patients who have
fatigue report that it keeps them from
doing their everyday activities, such
as shopping, showering, or cooking.
For three out of five patients, fatigue
is their single most difficult side
effect, worse than nausea, pain, and
depression.
Anemia
What Every Cancer Patient
Should Know about
Fatigue and Anemia
By Durhane Wong-Rieger, PhD, President & CEO, Anemia Institute
Anemia is a
condition in which
your body does not
have enough red
blood cells.
Although fatigue in cancer has a
variety of causes, a common one
is anemia. Anemia is a condition
in which your body does not have
enough red blood cells. Red blood
cells contain hemoglobin, which
carries oxygen throughout your
body. If you do not have enough red
blood cells, your body may be oxygen
deficient and you may therefore feel
fatigued.
In addition to fatigue, anemia may also
cause dizziness, shortness of breath,
weakness, inability to concentrate,
forgetfulness, and difficulty making
decisions.
What Causes Anemia?
Anemia in cancer has a number of
causes. The most common cause of
anemia in cancer is chemotherapy
drugs. These are designed to kill
rapidly-dividing cancer cells but also
destroy other rapidly-dividing cells,
including the bone marrow cells
that produce red blood cells. As a
result, many cancer patients receiving
chemotherapy develop anemia.
Loss of red blood cells can also result
if cancer causes bleeding, even in very
small amounts.
How is Anemia Diagnosed?
Anemia is diagnosed through blood
tests that measure levels of hemoglobin,
the oxygen-carrying protein in red
blood cells. Because chemotherapy
can reduce the number of red blood
cells in your body, it is important that
these be measured through blood tests
prior to treatment. If you are anemic
and your red blood cell count (or
hemoglobin) falls too far below normal,
you may not receive your full dosage of
chemotherapy on schedule. To prevent
this from occurring, your doctor may
suggest several options to avoid or
treat anemia.
If you are interested in knowing your
hemoglobin count and whether you
Network News Fall 2007 23

are anemic or not, ask your oncologist
or family doctor. You may also ask
for copies of your blood tests so you
can keep track of the changes in your
blood counts yourself.
Normal hemoglobin levels are:
120 – 160 g/L for women
140 – 180 g/L for men
A diagnosis of anemia depends on
hemoglobin levels.
To fully develop
and carry oxygen
effectively, red
blood cells need
iron and other
nutrients (B 12
and
folate).
intravenous injections. Likewise, B 12
may be taken orally or by injection.
However, before supplements are
taken, it is important that your doctor
tests and confirms that these nutrient
levels are low. It is also important
that the levels are monitored to be
sure the supplements are working.
It is not recommended that you
take these supplements without
instruction from your doctor.
Option 2: Medication to Increase
Red Blood Cell
Production
Your body regularly produces red
blood cells. Normally, when the
red blood cell count drops, the
kidneys produce a hormone called
erythropoietin, which travels to the
bone marrow to start the production
of new red blood cells. Cancer and
chemotherapy may disrupt this cycle,
and your body may not make enough
red blood cells.
any medication, there are risks and
side effects, and your doctor will
advise if this is the right treatment
option for you.
Erythropoietin therapy is covered by
almost all private or workplace drug
plans. It is also covered by public drug
plans in some provinces, including
Ontario, Quebec, Manitoba, and
Alberta.
Option 3: Blood Transfusion
If your hemoglobin falls very low, you
may require a blood transfusion. A
blood transfusion is the most effective
way of raising your red blood cell
count rapidly. While all transfusions
carry some risk, current methods
of screening and testing are highly
effective and donated blood in Canada
today is among the safest in the world.
Talk to your doctor to decide the most
appropriate treatment for you.
Option 1: Iron and other Nutritional
Supplements
To fully develop and carry oxygen
effectively, red blood cells need iron
and other nutrients (B 12
and folate).
If your anemia is due to lack of iron,
your doctor may prescribe iron
supplements. These are usually taken
orally but can also be in the form of
If your red blood cell count begins
to fall during chemotherapy, your
doctor may prescribe a medication
to increase the production of red
blood cells. This erythropoeisis
stimulating agent, works just like the
naturally occurring erythropoietin to
stimulate red blood cell production.
It is effective for moderate to severe
anemia but is most effective when
prescribed before red blood cell
counts have fallen too low. As with
Advertise in Network News!
CBCN is now offering the opportunity to advertise in
Network News. If you have an upcoming conference or event
or offer services to the survivor community, please consider
placing an ad. Our rates are quite reasonable, given that
you will reach over 3,000 groups and individuals across
Canada. For more information, contact Jackie Manthorne at
1-800-685-8820 ext. 222 or e-mail jmanthorne@cbcn.ca.
Find out more by contacting the Anemia
Institute at info@anemiainstitute.org,
1-877-992-6364, or www.anemiainstitute.org
Durhane Wong-Riegers, PhD, is
President and CEO of the Anemia
Institute & Institute for Optimizing
Health Outcomes. As president of
the Canadian Hemophilia Society
from 1994 to1998, she advocated
on behalf of consumers infected
through Canada’s tainted blood
system. She was the consumer
representative on the federal/
provincial/territorial committee
to establish an independent blood
agency and was named to its Board
of Directors as well as the National
Blood Safety Council. From 1984
to 1999, Durhane was professor
of psychology at the University of
Windsor. She is author of two books
and many articles and a frequent
lecturer and workshop leader.
24 Network News Fall 2007

Post-mastectomy
Sexuality
in Young Women Who Have
Survived Breast Cancer
By Carole Suzor
Receiving a breast cancer diagnosis
is one of the most profound and
all-encompassing experiences a
woman can have. Many aspects of her
life will be affected, including her social,
personal, familial and professional life.
Also, because this disease affects an
important part of a woman’s body, it can
have a deep impact on her sense of self.
Judging from the experiences of young
women living with breast cancer, if there
is one facet of the disease that literature
and conferences often overlook, it is
sexuality. As the Canadian Breast Cancer
Network included sexuality as one of
the potential article topics for its special
September issue, it is my pleasure to
share with you some of the results and
conclusions of my research on breast
cancer. In the context of a Master’s in
Sociology, I carried out interviews with
12 women who had undergone a total
mastectomy after being diagnosed with
breast cancer. Nine of these women were
50 years old or younger, and among these
nine, six were 45 or younger. One of them
was 35 years old and 38 weeks pregnant
when she found out she had cancer; she
underwent a breast removal one week
before the delivery.
The main theme of my study was
sexual identity and intimacy in women
who have undergone a breast removal:
women with and without spouses,
and women with and without breast
reconstruction. It is important to note that
for the purposes of my research, the word
“spouse” indicates a steady heterosexual
partner who lived in the same residence
as the women diagnosed with breast
cancer, both during and after the total
mastectomy. During the interviews,
the participants welcomed me not only
into their homes, but into their hearts,
into the intimacy of their private lives.
Participants addressed several aspects of
their breast cancer experience, varying
from the discovery of the abnormality
that compelled them to seek medical
attention, to their first post-mastectomy
sexual interaction, coming face-to-face
with the new reality of their bodies.
In today’s society, a disproportionate
level of importance is placed on physical
appearance, and breasts quite often
play a paramount role in advertising.
Breasts serve not only a nutritive
purpose for infants, but as a means of
sexual identification for the woman
herself. As soon as we hit puberty, our
breasts become an integral part of our
identities. Some consider them to be the
perfect symbol of femininity, sensuality,
eroticism and sexuality. Pondering
such ideas sparked my interest in the
experiences of women who undergo a
complete mastectomy after breast cancer.
Let’s bear in mind that all of the women
in my study have above all else chosen
life. They have prioritized LIFE above the
loss of a breast, because it was “important
to live.” It was often only after the
operation, perhaps while the woman
was still in the hospital but usually when
she had returned home, that she truly
came face-to-face with the new reality
of her body. It was then that the mirror
reflected an image of a mutilated woman.
For most of the participants, mirrors
were completely banished, as after their
operations the women could see only
their scars. For some women, their altered
bodies were symbolic of LIFE because
they survived, but for others, they were
a constant reminder of the cancer and
the sickness they suffered. In this light,
some participants opted for breast
reconstruction in an effort to avoid the
daily pain of seeing themselves, as they
put it themselves, “single-breasted.”
The succession of significant physical
changes resulting from various
treatments caused some women to
question themselves in terms of their
beauty, femininity and sexual appeal.
One participant who felt less beautiful
on the outside decided to work on herself
to become beautiful on the inside. Some
women felt less like women for a few
months, even a few years; another young
woman stated that, frankly, she felt like
a “half-woman,” but a “whole mother.”
One participant asked herself bluntly:
“What’s left of the woman in me?”
Another broached this issue of “feeling
like less of a woman,” declaring that
she was “more than a pair of breasts.”
She still felt like a woman, albeit a less
attractive one.
To be clear, not all of the women in
my study felt less beautiful, less like
women, or less attractive. Thus, well
before engaging in any form of sexual
interaction, the participants were shown
images of a disfigured, asymmetrical
body. For some, their sense of beauty,
femininity and sexual appeal were
altered as a result of the breast cancer.
The younger they were, the more they
were affected by these images. Their
relationships with their bodies, with
nudity, with clothing and with themselves
had been transformed. Such images and
ideas can alter or inhibit the future sexual
interactions of young women who have
had a complete mastectomy. How can a
woman who has undergone a mastectomy
reach the stage of sexual encounter with
a spouse or potential partner, if she is
not comfortable with her body, no longer
proud of it, ashamed of it, no longer finds
herself beautiful, feminine, or attractive?
At this point, a woman can turn to
various support groups, professional
help, and the support of loves ones, as
well as the reconstructive powers of their
spouse or a potential sexual partner. In
her partner’s loving, all-embracing gaze,
a woman’s self-esteem can be restored.
Sometimes, of course, it is the woman
herself who must look deep inside herself
to find acceptance and self-love, for others
can be destructive!
At this point it is important to distinguish
between the women with spouses and the
Network News Fall 2007 25

women without spouses at the time of
the mastectomy. When the women with
spouses came home after the operation,
their partners were of course already
aware of the women’s condition. Before
allowing themselves to approach their
spouses or to be approached sexually, the
women had to readjust to interacting in
an everyday manner. This routine intimacy
may have been marked with indifference,
anxiety, compassion, friendship or love,
depending on the case, and depending
on what kind of emotional relationship
existed before the cancer and how the
cancer had affected it. The situation
was very different for women without a
spouse or steady sexual partner. Initially,
when they got home, the single women
didn’t have to worry; they didn’t have
to wonder how they were viewed in
the eyes of their spouse, because they
didn’t have one. However, deep down
they knew that if they wanted to have a
sexual relationship with a man one day,
they would have to approach someone
or allow themselves to be approached
to establish a certain communicational
or relational intimacy before reaching
a point of sexual intimacy. For a young
breast cancer survivor, revealing to a
potential partner that she had a total
mastectomy invokes an enormous fear:
the fear of rejection. If rejection is indeed
the case, a woman’s self-esteem and selflove
must to be strong enough to help her
overcome it, allowing her to move on and
try to find someone else.
As far as the participants of my study
were concerned, one woman set forth
and called an ex-boyfriend, asking
him to “make love” to her because she
had to “make sure of a few things.”
This participant had gone through
some intense self-reflection about
what remained of her as a woman. She
wanted to be sure of how she felt in
her new body. She bought some pretty
bras and when she wore them for this
ex-boyfriend, he lifted them up and
kissed her scar. She found this gesture so
touching that she began to cry. This act
was essentially a complete acceptance of
her new body and of her entire self as a
person. He said to her: “Every part of you
is feminine - not just your breasts, all of
you.” The words of this man, along with
those of another woman’s lover, who told
her, “Every inch of you is beautiful,” are
testament to the reconstructive powers
of a woman’s partner, who sees, instead
of one part missing from the woman,
the totality of her being. All the same,
it is important to note that women with
spouses did not report hearing similar
remarks. Their spouses made comments
such as “I didn’t marry you for your
breasts,” or, “One breast, two breasts,
it’s all the same to me.” The women did
not believe them or were irritated by
such maladroit remarks; however, they
recognized the love and sympathy that
their spouses had for them.
The woman who called her ex-boyfriend
was seeking confirmation of her female
sexual identity. Not all of the women
reacted in this manner; some felt that
after their mastectomy they were no
longer “in the game,” or “ready to start
looking.” Two participants felt that the
playing field was no longer level as a
result of their new physique. It is mainly
during sexual play that difficulties
arose, at least in the initial stages of
contact with the sexual partner. A case
in point is the difficulty of wearing sexy
underwear, because without prosthesis,
as one participant pointed out, “it just
doesn’t fit.” Some women go through a
period of mourning, as it is impossible
to wear “an enticing little jacket with
only one breast.” The women call their
own attractiveness into question. Some
women are no longer proud of their
bodies; they would be ashamed to show
their body to a man; they wouldn’t
want him to see their scars because
they would feel humiliated. However,
two women were pursued by men who
knew of their physical condition and still
wished to enter into a relationship with
them. Neither woman accepted. One of
these women, despite having undergone
a breast reconstruction, had made a
decision not to start a relationship with
any man, and she stuck with it.
The participants of my study used
surgery, behavioral strategies and
wardrobe tricks to cope with their
insecurities about their bodies. While
having sexual intercourse with their
spouses, lovers or boyfriends, some
women kept their nightdress on for a
long time before allowing their partner
to remove it. Others, despite their initial
reluctance, ended up removing their own
nightgown or bra during the interaction.
In day-to-day life, the women showed
less skin around their spouses than they
had before the mastectomy, and turned
around while changing their clothes.
They also preferred softer lighting than
they had in the past. Those who had
slept nude before the mastectomy wore
nightclothes afterwards.
It goes without saying that lymphedema
and vaginal dryness can also create
difficulties when it comes to sexual
expression or expressiveness in women
who have had a breast removed. In
terms of sexual positions, certain
compromises or adjustments have to be
made. Positions in which the woman’s
partner is facing her scar, for example,
can be uncomfortable. At first, being
looked at or touched by her spouse, or
even having him caress her scar can
cause discomfort for a woman, and this
discomfort comes in two varieties. It
can be either physical, in the form of an
unpleasant, even irritating sensation for
some women, or psychological, because
the woman is not ready to be touched
in that area. One participant explained,
however, that once she had allowed her
spouse to touch her scar, she ceased to
worry about it and became more open to
full sexual expression. Some found that
foreplay was briefer, and one allowed
herself to be touched less but touched
her partner more. Sometimes the spouse
would involuntarily move as if to take
the two breasts together, a gesture which
could result in laughter or discomfort,
depending on the couple’s level of
acceptance and adaptation and how much
time had passed since the operation and
since sexual activity had recommenced.
In summary, of the six women aged 45
years or less, one chose not to have sex
anymore while the other five continued
to engage in sexual activity. Five of
the six had reconstructive surgery.
The reconstruction did not necessarily
improve the sexual act itself, but
rather restored physical symmetry and
consequently the simple ability to wear
seductive clothing, which contributed to
increased sexual expressiveness.
26 Network News Fall 2007

The Art and Science of Prosthetic Bra Fitting:
Feeling comfortable, looking great
By Christine Lackan
Of all the women who come
into my store, the most
rewarding ones to help
are the women who come in for a
Post Mastectomy Bra. Many who
are unsure about the processes also
struggle to feel feminine again. They
are self-conscious about whether
or not people notice that they had
surgery. As a Certified Prosthetic
Fitter and Certified Bra Fit Specialist,
my job is to try to relieve some of
this added trauma and show them
that this is not another painstaking
procedure.
There are a variety of places women
can go to for a prosthetic fitting;
hospitals, pharmacies, and medical
supply shops are good places to start.
There are also boutiques where the
setting is more intimate and fitters
can address concerns more privately.
Stores that also specialize in fit are
very important. Assuring that bras are
worn correctly under clothes will help
restore confidence in how you look.
They will also likely have the latest
styles in post mastectomy lingerie,
including sports bras, everyday
seamless and alternative strap bras.
Regardless of where you go, it is
important that you feel comfortable
both in the environment and with
those offering the service.
For women who have experienced
a mastectomy, a Certified Prosthetic
Fitter can be a lifesaver. In order to
receive this designation, individuals
must first qualify as a Certified
Bra Specialist. This knowledge is
important as fit can affect posture
and spine alignment. Today, this
certification is not mandatory to sell
prosthetics so if this is important to
you, make sure to inquire about the
designation.
The art and science of a prosthetic
fitting has many components. Here
are some tips:
Speak out: When going in for a
prosthetic and/or bra fitting, look
for a store where you feel safe and
comfortable and where you can start
to make decisions about the options
that are available. The fitter will first
assess you to evaluate what is needed
based on the type of surgery and
incision. Being able to communicate
with your fitter about comfort is
necessary to ensure the right fit.
Don’t be afraid to discuss your
concerns and how you want to look.
Only you can describe how you feel!
Make it fit: Here is where having
a Certified Bra Specialist really
helps. She will measure you for the
right sized bra. This is important
because you want the prosthesis to
fit perfectly within the pocket of the
mastectomy bra.
Stand tall: If women are not fitted
correctly, or do not use a prosthetic
at all, their spine and balance can
be thrown off. The fitter will look
at your posture and will make
suggestions regarding comfort and
alignment.
Look for good symmetry: A good
fitter will assess the symmetry of
your current prosthesis. This ensures
that it matches your natural breast.
It is important to do this yearly as
women’s breast size and density
change as they get older. The fitter
For women who
have experienced
a mastectomy, a
Certified Prosthetic
Fitter can be a
lifesaver.
will make suggestions for which
prosthetics and bras are most
appropriate for individual shape
and body type. A good fitter will
be knowledgeable about the latest
breast prosthetic technology and
will keep clients up to date.
Christine Lackan is the owner of
Brava Boutique. Celebrating its
10 th anniversary, Brava Boutique
offers exclusive European &
Canadian lingerie and speciality
garments to the downtown
Toronto core. Owner Christine
Lackan has over 17 years of
experience in the intimate apparel
industry. The sole Certified Fit
Specialists and Certified Prosthetic
Fitters in the heart of the financial
district, Christine and her team
have fit over 50,000 women,
many of whom are breast cancer
survivors. Private, personalized
consultations are available upon
request. Product sizes range from
32A to 52JJ. Brava Boutique
is located at 25 King St. West,
Commerce Court North,
416-363-1843.
Network News Fall 2007 27

Breast Tattooing:
Is it for you?
Having breast cancer is without
a doubt a life-altering journey.
There are many decisions
to make along the path to recovery,
and for women who decide on breast
reconstruction as part of their treatment,
there are a few more steps in their
passage back to wellness. The effects of
breast surgery can impact a woman’s
feelings of wholeness and completeness.
There can also be a sense of loss for the
removed breast(s) and a sense of lost
womanhood. Breast reconstruction can
help to improve the satisfaction a woman
feels about her body after breast cancer,
and if offers options to those who do not
wish to wear a prosthetic breast and to
those who want to create something more
permanent to give their bosom shape.
While breast reconstruction can restore
some of those feelings of femininity
or womanliness, there are many
women who have expressed that their
reconstructed breast did not completely
feel or look like a “real” breast. It was
because of these women that our Breast
Health Centre, located at the Victoria
General Hospital, Vancouver Island
Health Authority, decided to look
into the feasibility of offering a nipple
/ areola tattooing clinic. A need was
identified, and we began to offer women
who have had breast reconstruction
the service of nipple/areola tattooing.
Such tattooing is seen as a means of
completing the reconstruction process –
from breast surgery and reconstruction
to nipple reconstruction, and finally
to nipple/ areola tattooing. For some
women this final procedure offers them
the finishing touches or the “icing on the
cake,” so to speak.
Nipple/ areola tattooing or
micropigmentation is carried out by
applying iron-oxide pigments through a
series of needle injections to the dermal
By Joanne Maclaren, RN, BSN
layer of the skin. While some of the
pigment is expected to fade initially,
tattooing is considered a permanent
marking of the skin. For nipple / areola
tattooing, pigments are selected based
on a woman’s skin tone, comparison
to the other nipple / areola, and the
woman’s colour preference. Due to the
healing process, the initial pigment
application partially sloughs off and
may require some additional touch up.
While the pigment can be applied prior
to the nipple reconstruction, for optimal
success it has been our preference to wait
at least eight to 12 weeks following the
nipple reconstruction before tattooing the
breast tissue.
Many women have expressed a
significant degree of emotional distress
or discomfort about having to expose
their reconstructed breast(s) in nonhealth
care settings (tattoo parlors)
for tattooing procedures, and to
non-healthcare professionals who
do not understand what they have
been through. Given this, it seemed
a natural fit to have the nurses in our
Centre learn the art of tattooing and
to expand the services we offer to our
breast cancer patients. As Breast Health
Patient Navigators, our responsibilities
include providing emotional support,
information, education, and patient
navigation services to women and their
families, as well as liaising with hospital
and community partners to ensure
continuity of care and to achieve optimal
clinical outcomes and client satisfaction.
As well, we act as a clinical resource
for physicians and other health care
professionals and students, and provide
community outreach education.
Nipple / areola tattooing is yet one more
service we offer, and it has been very
well received by our patients since the
program’s inception a year ago. Patients
have expressed immediate joy as they
peer down and view their tattooed
breast, giving them a sense of realism
and completeness once again. Many
women have indicated that they feel
“whole” and can look at their breasts,
which, in their own words, now look
like breasts and not just “a bump on the
chest.” While our program has not yet
done any formal evaluation, there have
been studies to indicate long-term patient
satisfaction with the tattooing procedure.
Spear & Arias (1995) conducted a study
on 151 patients who received nippleareolar
tattooing by an experienced
nurse tattooist over a six-year period,
using the Permark Micropigmentation
Device. Patient satisfaction was assessed
by asking patients if they were happy
with their tattoo. 83% of patients
said yes. When asked if they would
choose tattooing again under similar
circumstances, 86% of the patients said
yes.
If women are interested in learning more
about nipple / areola tattooing, they
are encouraged to seek out information
from their local hospital or breast health
centre.
Joanne Maclaren is a Breast Health
Patient Navigator in the Breast Health
Centre, at Victoria General Hospital,
Vancouver Island Health Authority.
She has been nursing for 18 years with
a special focus on women’s health and
has been working in the centre for
the past five years. She would like to
acknowledge her two colleagues Cathy
Parker & Dorothy Yada, whom are
also now trained in the art of nipple
/ areola tattooing. She would also
especially like to acknowledge Shaney
Weirich, Winnipeg Health Sciences &
Pan Am Surgical Centre, Winnipeg,
Manitoba, for sharing her expertise &
wisdom in the field of nipple/ areola
micropigmentation.
References:
Spear, S. & Arias, J. (1995). Long term
experience with nipple-areola tattooing.
Annals of Plastic Surgery. 35: 232 – 236.
28 Network News Fall 2007

Research Studies of Interest to
Young Women
Younger Women’s Experience with Distress at
Time of Breast Biopsy and Diagnosis
Carole Mayer, PhD Candidate
from Memorial University in
Newfoundland and Clinical
Leader & Administrative Manager for
the Supportive Care Program, Regional
Cancer Program of the Sudbury
Regional Hospital, is currently
conducting a study with younger
women who require a breast biopsy
for a breast detected abnormality. The
purpose of her research is to have
a better understanding of women’s
experience with distress from the time
they are informed of a breast detected
abnormality requiring biopsy until
a diagnosis is confirmed. Her study
focuses on women who are under the
age of 50 and who are pre-menopausal.
Women under the age of 50 are not
formerly recruited into organized
breast screening programs; hence their
recommendations for breast health
may vary depending on their family
physician. Given that breast cancer
is a disease that affects older women,
younger women often experience
more difficulties to have their breast
symptoms taken seriously resulting
in delays to diagnosis. A U.S.A. study
demonstrated that most breast cancer
malpractice litigation cases were won
by younger women (mean age 40) who
experienced delays with their diagnosis
(Kern, 1992). Once a diagnosis is
confirmed, younger women face other
challenges as highlighted in a report
published by the Canadian Breast
Cancer Network and the Ontario Breast
Cancer Community Research Initiative
(Nothing Fit Me: the Information and
Support Needs of Young Women with
Breast Cancer, 2002). Younger women
experience difficulty accessing
information specific to their age group;
there is a need for both emotional
support and practical/instrumental
support with childcare, homemaking
and financial assistance. Access to
professional and peer support is
limited. Young women struggle with
the changes to their bodies, the impact
the illness has on their families and
they also experience major financial
burdens.
Evidence is emerging
on the relationship
between the
development of
pre-menopausal breast
cancer and both active
and passive smoking
among young women.
The lens that Mayer has chosen
to guide this qualitative study is
through feminist epistemologies. She
is also using a participatory action
research (PAR) framework for this
study, creating a collaborative process
between participants and researcher
that builds on the principal of
empowerment. Interviews are being
conducted before breast biopsy, after
breast biopsy and the women are
participating in focus groups three
months or more after their experience.
Mayer hopes the results can lead to
better interventions to reduce distress
at initial time of diagnosis.
Contact Information: cmayer@hrsrh.
on.ca or 1-877-228-1822 ext 2700.
Messages for Young Women about
Tobacco: Exposure and Breast Cancer
A New Project
Evidence is emerging on the
relationship between the development
of pre-menopausal breast cancer and
both active and passive smoking
among young women. To date,
messages regarding this risk are rarely
targeted towards young women, and
even fewer efforts exist regarding
smoking prevention and intervention
to raise young women’s awareness of
tobacco smoking as a risk for breast
cancer.
What is the study about?
Our national research team aims to
increase knowledge and understanding
of young women as an audience for
messaging regarding breast cancer
and smoking. Your participation in
this project will help health experts
create messages about health for
young women that are easy to
access and informative. This will be
accomplished by conducting focus
groups with young women and key
informant interviews with identified
stakeholders.
The main outcome of this pilot
project is to develop a national study
identifying effective messaging
strategies for young women about the
risks of tobacco and breast cancer.
What is involved in participation?
Participants will be assigned to a
focus group based on their age and
smoking status. Each focus group
will have four to eight young women.
Participants will be asked to complete
a brief questionnaire prior to the
group discussion. The focus groups
will be conducted by two trained
facilitators and will last approximately
two hours. Each participant will
receive a $30 honorarium for their
involvement. Approximately one week
after the group discussion, the project
coordinator will contact participants
Network News Fall 2007 29

y telephone to gather any additional
comments about the topics discussed.
Who is eligible to participate?
• Young women aged 15-24 (if under
the age of 19, participants will need
their parent/guardian’s consent)
• Smokers and non-smokers
• Young women that reside in
Kelowna, British Columbia or
Fredericton, New Brunswick
If you would like more information,
or would like to be involved please
contact:
Erin Ptolemy
Research Assistant
eptolemy@interchange.ubc.ca
250-807-8072
Faculty of Health & Social
Development
University of British Columbia
Okanagan
Joanne Carey
Research Coordinator
Joanne-carey@ubc.ca
250-807-8034
Faculty of Health & Social
Development
University of British Columbia
Okanagan
Team Biography
The team is made up of researchers
from coast-to-coast and includes:
Dr. Joan Bottorff at the University of
BC-Okanagan; Dr. Ken Johnson at the
Centre for Chronic Disease Protection
and Control Public Health Agency of
Canada, Toronto. Co-Investigators:
Dr. Lynne Baillie, Prevention Program,
BC, Cancer Agency, Kelowna; Dr.
Roberta Ferrence, Ontario Tobacco
Research Unit, University of Toronto;
Dr. Alison Brazier, Dr. Chizimuzo
Okoli, & Dr. Rebecca Haines, School of
Nursing, University of BC Vancouver;
and Ms. Julie Easley, Department of
Graduate Studies, Interdisciplinary
Program, University of New Brunswick.
This research is supported by the
Canadian Breast Cancer Research
Alliance.
support the work of the
Ca n a d i a n Br e a s t Ca n c e r Ne t w o r k
Make a difference in the life of someone with breast cancer.
How can you help?
Become a member or renew your membership with CBCN,
and consider making a tax-deductible donation to support our work.
We need you to get involved!
Membership costs $25 per year (for both individuals and organizations).
However, this fee will be waived on request.
Mail your cheque to:
CBCN
300-331 Cooper Street, Ottawa, ON K2P 0G5
Include your mailing address for a tax receipt and to receive Network News and
your e-mail address to receive CBCN program notices and news.
To pay by Visa or Mastercard or to request a waiver, call us at:
Tele 1-800-685-8820 • 230-3044 (in Ottawa) • Fax 613-230-4424
Email cbcn@cbcn.ca • Web site www.cbcn.ca
We would also be pleased to discuss sponsorship opportunities.
30 Network News Fall 2007

Members, Friends, Funding Partners
and Corporate Friends
CBCN gratefully acknowledges the following individuals
and organizations for their financial contributions.
Member ($25-$99)
• The hundreds of individuals and groups
across the country.
Friends of CBCN ($100-$499)
• Alwyn Anderson, Medicine Hat, AB
• Anonymous (13)
• Augusta Productions, St. John’s, NF
• C. Scott Findlay, Chelsea, QC
• Carol Ann Cole, Halifax, NS
• CKCO, CTV Television Inc.
• Clinique de radiology St. Pascal, Québec, QC
• Convergys Customer Management Inc.,
Ottawa, ON
• CPAC and Staff, Ottawa, ON
• Darlene Halwas, Calgary, AB
• Dianna Schreuer, Dartmouth, NS
• Dr. Brian Doan, Toronto, ON
• Dr. Joan Worth, Nanaimo, BC
• Dr. Lisa Campfens, Calgary, AB
• Dr. Pamela Gillies, Saskatoon, SK
• Elaine Dean, Ottawa, ON
• Encana Cares Foundation
• Mrs Eva Bereti, AB
• Helen Elsaesser, Parry Sound, ON
• Hope Cancer Help Centre, Saskatoon, SK
• Isabel Burrows, Ottawa, ON
• Jackie Manthorne, Ottawa, ON
• Jan Zwicky, Victoria, BC
• Jennifer Canham, Toronto, ON
• Karen DeKoning, Chatham, ON
• Knot A Breast Dragon Boat Team,
Burlington, ON
• Linda Briskin, Toronto, ON
• Margaret Ireland, Jean Marie River, NT
• Mary Rogers
• Maureen Jackman, Toronto, ON
• Ratna Ghosh, Montreal, QC
• Sunnybrook and Women’s College Health
Sciences Centre, Toronto, ON
• Volkswagen Canada Inc.
Bronze Level Supporters
($500-$4,999)
• Anonymous (2)
• AstraZeneca Canada Inc.
• Bell Canada Employee Volunteer Program
• Belyea Bros (West) Ltd
• Breast of Canada
• Canadian Gift Concepts
• CUPE National Office
• Gowlings
• Hummingbird Ltd.
• Telus Communications
Sliver Level Supporters
($5,000-$24,999)
• CURE Foundation
• J.P. Bickell Foundation
• London Life Employee Charity Trust
• Ortho Biotech Inc.
• Roche
• Temerty Family Foundation
• The Harold Crabtree Foundation
Gold Level Supporters
($25,000-$99,999)
• Canadian Breast Cancer Foundation –
Ontario Chapter
• GlaxoSmithKline
• Pfizer Canada
• Rethink! Breast Cancer
• Schering Canada Inc.
Government
• City of Ottawa, Ottawa Partnership for Jobs
• Human Resources and Skills Development
Canada
• Public Health Agency of Canada
• Service Canada, Canada Summer Jobs
Corporate Sponsors
• Aquamedia
• National Fundraising Network
• Pizzazzing You
• Sassy Sam’s
Board of Directors,
2007
Canadian Breast
Cancer Network
Lise Bélanger, Treasurer, New Brunswick
•
Nina Burford, Labrador
•
Eva Bereti, Alberta
•
Diana Ermel, President, Saskatchewan
•
Francine Gervais, Member-at-Large,
Quebec
•
Jennifer Harkness,
GTA (Greater Toronto Area)
•
Dianne Hartling, Ottawa-Gatineau
•
Dianne Moore, Ontario
•
Meeka Mearns, Nunavut
•
Janis Murray, British Columbia
•
Carol Rinella, Manitoba
•
Doris Rossi, Ontario
•
Dianna Schreuer, Past President,
Nova Scotia
•
Mercedes Sellars, Newfoundland
•
Diane Spencer, Vice-President,
Nova Scotia
•
Marion Storm, Northwest Territories
•
Vanessa Turke, Secretary,
British Columbia
Network News Fall 2007 31

Canadian Breast Cancer Network Partners
National Partners
• Breast Cancer Society of Canada
• Canadian Breast Cancer Foundation
• Canadian Breast Cancer Research Alliance
• Canadian Cancer Society
• National Cancer Institute of Canada
• National Ovarian Cancer Association
• Willow Breast Cancer Support and Resource Services
• World Conference on Breast Cancer
Provincial/Territorial Networks
• Alberta Breast Cancer Network
• Alliance for Breast Cancer Information and Support, British
Columbia and Yukon
• Breast Cancer Network Nova Scotia
• Breast Cancer Action Saskatchewan
• Manitoba Breast Cancer Information and Support Network
• New Brunswick Breast Cancer Information Partnership
• North West Territories Breast Health/Breast Cancer Action
Group
• Nunavut Breast Cancer Project
• Ontario Breast Cancer Information and Exchange Project
(OBCIEP)
• Prince Edward Island Breast Cancer Information Partnership
• Purple Lupin Partnerships of Newfoundland and Labrador
• Qulliit, Status of Women Council
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 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
• First Nations Breast Cancer Society
• FLOW
• Hereditary Breast & Ovarian Cancer Society of Alberta
• Manitoba Breast Cancer Survivors Chemo Savvy Dragon Boat
Team (Winnipeg)
• Miles to Go Healing Circle - Six Nations (Ontario)
• New Brunswick Breast Cancer Network
• Ontario Breast Cancer Community Research Initiative
• 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