Matters

family

O n t a r i o Fa m i l i a l B r e a s t C a n c e r R e g i s t r y

Time to FOLLOW-UP

ITS

true that OFBCR research

worry, your answers will be kept strictly confi-

is only as good as the infor-

dential and not shared among family members.

mation weve collected, so

Have questions or concerns? CONTACT Ms. Elaine

its extremely important for us to touch base,

Maloney, OFBCR Coordinator toll-free at 1-800-832-

person to person, every couple of years to

5949 Ext 4413 or email OFBCR@cancercare.on.ca

make sure our records reflect natural changes

Introducing our friendly

FOLLOW-UP voices:

to your health and family history.

If you are an OFBCR participant (male or

Leigh-Anne Ward joined the OFBCR as an inter-

female) who was diagnosed with breast cancer in

1996, 1997 or 1998, we will be calling

viewer in February 2007 after com-

you and your participating relatives

pleting her Honours Bachelor of

over the next few years to complete

Science degree in Biology at York

a Follow-up Interview by telephone.

University. She has had a great deal

We will ask questions about

of experience at Princess Margaret

your breast and ovarian cancer

Hospital in Toronto, working for

screening practices, surgeries,

four years as a patient flow coordi-

medications, new disease, and

nator for the chemotherapy and

lifestyle factors, as well as update

transfusion outpatient units. She

Leigh-Anne Ward

your family history of new births,

deaths and cancer diagnoses.

loves traveling, reading, and playing

soccer and plans to pursue a

Your answers will be combined

Masters degree in Epidemiology in

with information you gave us previ-

the future.

ously to help scientists better esti-

Rohini Gosai is a Data Analyst who

mate cancer risks and possibly

joined the OFBCR back in October

develop more effective strategies to

2001 after completing her Honours

prevent and treat breast cancer.

Bachelor of Science degree in

Biology at the University of Toronto.

We know youre busy, so your

She brings a passion for research

Follow-up Interview will be comRohini Gosai

pleted at a time most convenient

and healthcare experience gained

for you (mornings, evenings or weekends) just

through volunteering at North York General

let your telephone interviewer know what works

Hospital and working with the elderly in long term

best, if you agree to complete it. Other things

care. She is involved in many aspects of the reg-

you might like to know are that where possible,

istry, including the follow-up. Spare time is spent

the same telephone interviewer will contact all

enjoying her family, cooking, doing Yoga, and

participating members of your family; but dont

enjoying movies and music.

Inside
This Issue
Volume 2
2008

2
3

Your Place
Personal stories

OFBCR Research
Update

LEGACY Studying
breast cancer before
it develops

Prophylactic
Mastectomy Study

OFBCR Past,
Present, Future
In 1995, the National Cancer
Institute (NCI) of the U.S.
National Institute of Health
funded the creation of six
Breast Cancer Family Registries
including our very own
OFBCR.
Your unstoppable loyalty
and commitment over the
past 12 years, has enabled the
OFBCR to become a valuable
resource of information and
samples, attracting breast
cancer researchers worldwide.
In 2006, the OFBCR received
good news of 5 years of additional NCI funding. Since then,
weve restructured and refocused and are pleased to bring
you the exciting plan of whats
happening in 2008 and beyond.
First off, our team has been
busily preparing to get back in
touch with you and your family
to update Registry records
through our telephone Followup Interview. Completing this
interview together over the
phone means fewer questionnaires for you to fill out and
remember to mail back!
In this issue of familyMatters,
youll hear from one supportive
teen who stood by her aunts
side through her battle with
breast cancer, meet a handful
of innovative Canadian Researchers who are taking their
quest for answers to the next
generation, and hear from
ongoing local studies using the
OFBCR resource to uncover
important findings.

Tell us what you think of

FamilyMatters
1-800-832-5949
OFBCR@cancercare.on.ca

Please Say
Yes to
Blood Donation
Ontario Familial Breast Cancer Registry

Matters

family

YourPlace
A grade 12 student reflects on her
aunts journey with breast cancer

IT

was a typical December day

eight years ago. She never thought it could happen to her. She

Personal stories from

women and men
with breast cancer and
their caregivers

her life, she chose not to. She remained optimistic and completed an amazing journey.
She met new and amazing people who were
dealing with the same things she faced.

wasnt a smoker and there was no history of

Even though her family and friends had

it in her family. It was just a lump to be rem-

been there to support her every step of the

oved; surely it would show up benign. Life

way, she discovered that the best thing

would go on; but it didnt go exactly like that.

was talking to someone who had been

Even though she hadnt been persistent

through the same thing. It created a sense

about self-breast examinations and had only

of belonging and allowed her to realize

one mammogram in her life, she wasnt wor-

that she was not alone, that many others

ried. It couldnt be cancer. Within two weeks

were facing the same thing.

of finding that lump, she had met with her

She learned to not worry about things

doctor and was scheduled for surgery. But

outside her control, that a positive outlook

the deciding factor was the needle biopsy.

helps each day become enjoyable, just how

The results were words no one would ever

much her family and friends loved her, how

want to hear malignant. It was cancer.

much she loved them, and that its the small

The emotions ran high. She was angry,

things that people do that really matter.

frightened and thought her world had

Whether a funny card, a phone call, or some-

stopped. But even though she was feeling

one just being there by your side through a

all this, she was determined to beat it. She

didnt fully understand cancer and how

treatment, it was the little things that

wasnt going to let cancer take over her life.

powerful it was. But we had a great day.

brought light to the darkest moments.

The results of the surgery were in.

The tumour was cancerous but had not

My aunt hasnt forgotten this day either.

It has been eight years this December

A few weeks after the surgery, Aunt

since her diagnosis and she has remained

spread anywhere else; all 13 lymph nodes

Helena met with her oncologist. He had

cancer free. She has become a stronger

were clear. She was out of the hospital in

analyzed the type of cancer she had, and

person from her journey and continues to

one day and began the road to recovery.

his recommendations hit my aunt hard. She

help fight for those who have the disease.

The drainage tubes and surgical dressing

thought the surgery was all she would need,

For the last three years she has joined

required continual care. She wore loose-

but the form of cancer she had was very

thousands of people for a weekend in

fitting clothing to remain comfortable but

aggressive and given the fact that it grew so

the fall for a 60-km walk to fight breast

still made her way up north for Christmas.

rapidly, an aggressive treatment of

cancer. This disease may be gone from

She continued to live as she always had.

chemotherapy and 25 radiation treatments

her body, but it has not left her heart.

She brought me back to the city with her

was recommended.

and my uncle on Boxing Day, as they had

She remained positive throughout this

Submitted by Stephanie Pierre, niece of

got me tickets to see the Nutcracker. I

whole ordeal. She continued to work, took

Helena Taylor, valued OFBCR participant

remember the day of the production.

each day one at a time and researched

since 1997

I was sitting on my aunts bed as she

and read about the disease as much as she

went in and out of her walk-in closet trying

could; she wanted to know what to expect.

Share your story

on different sweaters and blazers, seeing

She bought a wig and went to her hairdresser

which one was the most comfortable and

and got her head shaved after one morning

was able to hide the drain. I wasnt scared at

in the shower when lumps of hair began

all. The drain and drainage didnt scare me.

coming out. She wanted to be ahead of the

It still surprises me that it didnt have a huge

situation; no unexpected occurrences.

in 500 words or less.Tell us how

breast cancer has affected your life.
Mail to Family Matters, c/o Danielle Hanna,
OFBCR, 610 University Ave. Rm 8-502A,
Toronto, ON M5G 2M9 or e-mail
danielle.hanna@cancercare.on.ca.

effect on me as I was only 9 years old and

pessimistic about what was happening in

O nt a r i o Fa m i l i a l B re a s t Ca n ce r R e g i s t r y

Even though she could have been

Matters

family

LEGACY

DR

Irene Andrulis, Director

Studying breast cancer

of the OFBCR, and her

team of researchers have

before it develops

The Early Breast Health Study

Inviting daughters to get involved.

begun piecing together the early stages of an

Dr. Cara Mulhall and her team from

exciting, new, internationally, collaborative

Cancer Care Ontario, Mount Sinai

research study called LEGACY (Lessons in

Hospital and the Hospital for Sick

Epidemiology and Genetics of Adult Cancer

Children are leading the Early Breast

from Youth).

Health Study through the OFBCR.

LEGACY is the first breast health study in

The Early Breast Health Study will:

Canada planning to look to the next genera-

Test a safe, new, pain-free technique

tion for answers by following daughters as

using light to measure early breast

young as age 5 through 17 years, whose

mothers or aunts have had breast cancer.

development.
daughters giving a mouth swab or blood

Help us better understand how

LEGACY involves sensitive and chal-

sample to look at hormone levels and

young girls grow and develop into

lenging work, but studying girls while still

common genetic changes (not testing

healthy women.

young and developing may be the key to

BRCA1/BRCA2 genes).

Lead to improved ways to prevent

finding potential risk factors and habits,

64% of parents welcomed the idea

and detect breast cancer in women.

that if caught early, could result in ultimately

of a physical breast exam to determine

Help us plan future, larger research

fewer diagnoses of breast cancer.

their daughters pubertal stage of breast

studies with young girls and their parents.

What do parents think about LEGACY?

development if performed by a trained

WHO's invited? Over 300 daughters

The first step in designing a breast health

professional.

(between the ages of 7 to 17) of OFBCR

study involving daughters, ages 5 to 17 years,

Parental thoughts and considerations

participants living in the greater Toronto

was to ask mothers and fathers what they

Parents would respect their daughters

area will be mailed personal invitations.

think of the idea. With funding from the

decision about whether or not they would

WHAT? & WHERE? Daughters and par-

Canadian Breast Cancer Foundation, we

participate in the study.

ents or legal guardians will be invited to

interviewed a total of 85 parents (mostly

Parents want to be the key people dis-

Princess Margaret Hospital, downtown

mothers who had breast cancer), 47 of

cussing enrollment and aiding in the collec-

Toronto, for a single, one-hour visit,

which who were participating in the OFBCR

tion of data from their daughters so they

where our registered nurse will measure

and the rest from the Breast Cancer

could gauge their comfort level and under-

height, weight and breast development

Registries in Utah and Northern California.

standing of the study.

and ask for a small blood sample. We

Results

Parents understood that their daughters

will also ask questions about daily exer-

Parents demonstrated a high level of inter-

potential worries about health or pubertal

cise, other health related factors, and

est in the LEGACY study and would support

awkwardness would need to be minimized

invite daughters to tell us in their own

their daughters decision to take part, believing

by study design and the availability of sen-

words, what they think about being in

LEGACY may increase the understanding of

sitive professional staff.

the Early Breast Health Study.

breast cancer as well as benefit their daugh-

Parents practical suggestions

Contact Lara Spiteri, Registered Nurse

ters future health by encouraging the pursuit

LEGACY may want to provide female staff

and Early Breast Health Study

of a healthy lifestyle.

for the collection of sensitive data, use expe-

Co-ordinator at 416-946-4501 Ext.5226

92% of parents welcomed the idea of LEGA-

rienced blood takers, create easy to under-

or e-mail: lightstudy@cancercare.on.ca,

CY collecting questionnaires about daughters

stand study materials for parent and child

to learn more.

birth information, exercise and diet patterns,

and allow participants to complete only the

details of illnesses and current health status,

parts of LEGACY their daughter feels com-

and said they would be happy to help their

fortable with. Weve listened carefully and

daughters fill them out.

taken all parental suggestions seriously in

87% of parents welcomed the idea of their

creating The Early Breast Health Study.

This important work is supported by grants from

the Susan G. Komen Breast Cancer Foundation,
the Canadian Breast Cancer Foundation (Ontario
Chapter), the Ontario Centres of Excellence, and
through generous donations from local businesses

O nt a r i o Fa m i l i a l B re a s t Ca n ce r R e g i s t r y

Matters

family

OFBCR
Research Update
Breast Screening Study

ith support from the Canadian

Breast Cancer Research
Alliance and the National

BREAST SCREENING STUDY STAFF: (from left to right): Elizabeth Arbour, Lindsay Stewart,
Sheetal Nanda, Anna Chiarelli ABSENT FROM THE PHOTO IS: Jennifer Kohn

Cancer Institute of Canada, Dr. Anna

Chiarelli and team of telephone interviewers

and breast exams? to over 1500 women,

intermediate risk; and 56.5% from the

at Cancer Care Ontario are asking the ques-

from 848 OFBCR families, where a female

lowest risk group.

tion, Do you go for regular mammograms

family member has had breast cancer

Participants will be followed for two

diagnosed between the years 1996 to 1998.

more years, with a questionnaire completed

The studys purpose is to compare

each year to collect additional information

Prophylactic Mastectomy Study

FACT: Women carrying a BRCA1 or BRCA2

breast screening behaviours and risk

on changes in screening practices. Final

gene mutation have a higher chance to devel-

perceptions among women with at least

results will be available once the study

op breast cancer. Prophylactic (preventative)

one first degree relative with breast and/or

is finished. The Breast Screening Study

mastectomy is one option available to consider-

ovarian cancer. Dr. Chiarelli hopes to

thanks all the wonderful women and their

ably lower breast cancer risk.

learn how routine breast screening among

relatives for participating and making the

WHOS ELIGIBLE: Any woman with a

women with different degrees of family

study a great success so far.

BRCA1 or BRCA2 gene mutation, who has made

history can be beneficial by finding benign

How you can help

the decision to have prophylactic mastectomy.

breast conditions or breast cancers earlier.

Our biggest challenge has been finding

STUDY PURPOSE: To identify future targets

Results so farWith 85% of women

women who have moved! If you or your

for breast cancer treatment and detection by

contacted by the study having finished

participating relatives have a new address,

looking for differences in breast tissue from

their first interview, early findings suggest

please call and let us know and encourage

mastectomy samples taken from high risk

that a womans screening behaviour may

your relatives to do the same.

women compared to the general population.

be influenced by her risk. After classifying

Please drop your pink consent form

WHERE: Mount Sinai Hospital and Princess

women into three risk groups (high,

in the mail ASAP using the supplied

Margaret Hospital,Toronto, Canada

intermediate and low) based on family

envelope, if you havent already done

For more information contact:

history of breast, ovarian or bilateral

so. If you have misplaced either,

Ms. Seema Panchal, Genetic Counsellor,

breast cancer and ages at which relatives

wed be happy to send a replacement.

at 416-586-4800 Ext.4856 or email

were diagnosed, we can see that 75% of

Contact the study coordinator:

SPanchal@mtsinai.on.ca

women at highest risk had a mammogram

Ms. Lindsay Stewart at 416-217-1228

in the past 3 years; compared with 73% at

or toll free at 1-866-989-0031.

Please Say Yes to Blood Donation

Each and every blood sample donated to OFBCR research is
like gold! Using blood samples along with questionnaire data

The Early Breast Health Study THANKS

the following businesses across the Greater
Toronto Area for their generous donations:

you have already provided is the only way the OFBCR can

Boston Pizza

McDonalds

answer important questions about the role of genetics and

Cause & Affect

Mr. Greek

lifestyle factors in the development of breast cancer.

If youve already donated your blood sample, THANK
YOU! For those of you who are still not sure, we encourage
you to contact Jennifer Batchelor to learn more.
Call toll-free at 1-800-832-5949, Ext 5224.

Jennifer Batchelor has been with the OFBCR for more

than 7 years! She is the OFBCRs go to person for all things administrative and a
key member of the FOLLOW-UP team of telephone interviewers. Jennifer especially
enjoys her summers at the family cottage, going hiking and fishing.

(Keyring of Hope)

Ms.Toni Prinss (art)

Ganz (Webkinz)

Rogers Video

Kens Picture

Scholastic books

Frames (art)

Silvercity Yorkdale