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MR-117E
BREAST CANCER: NATIONAL FORUM,
MONTREAL, 14-16 NOVEMBER 1993
Prepared by:
Sandra Harder
Political and Social Affairs Division
6 January 1994
TABLE OF CONTENTS
STRUCTURE OF THE NATIONAL FORUM
SELECTED HIGHLIGHTS FROM CONFERENCE PRESENTATIONS
A. Prevention and Screening
1. Environmental Contaminants
2.
Genetic Markers for Breast Cancer
B. Research
C. Treatment and Care
D. Support, Advocacy and Networking
POST-FORUM DEVELOPMENTS
BREAST CANCER: NATIONAL FORUM,
MONTREAL, 14-16 NOVEMBER 1993
In June 1992, the Sub-Committee on the
Status of Women of the House of Commons Standing Committee on Health and Welfare, Social
Affairs, Seniors and the Status of Women released its report Breast Cancer: Unanswered
Questions, the culmination of a seven-month study that explored a range of issues to
do with breast cancer in Canada. Throughout its study, the Sub-Committee heard from
experts in the fields of epidemiology, treatment, research and detection, as well as from
survivors of breast cancer.
The final report made 49 recommendations
aimed at responding to gaps in breast cancer treatment and research. Among the concerns
addressed was the need for a process to facilitate communication and information exchanges
among experts working in all areas of breast cancer care. Moreover, the Sub-Committee,
moved by the experiences and needs of women living with breast cancer, recommended that
the federal government fund a conference for survivors that would allow them to begin to
establish a national network of support and advocacy groups. Health and Welfare Canada, in
its response to the Sub-Committee's report (released in December 1992), agreed to fund
such a conference. The National Forum on Breast Cancer was the result.
STRUCTURE OF THE NATIONAL FORUM
Conference organization was a
collaborative effort by Health Canada, The National Cancer Institute of Canada, the
Medical Research Council, the Canadian Cancer Society and survivor groups. In order to
ensure that the Forum addressed the range of issues identified in the Sub-Committee
report, four Forum Sub-Committees were established: Research; Prevention and Screening;
Treatment/Care; and Support, Advocacy and Networking. Each Sub-Committee was chaired by
someone knowledgeable in the field, who, with a vice-chair, established working groups of
individuals committed to its specific concerns. These Sub-Committees and Working Groups
met over the course of a number of months to identify and discuss issues and to produce a
written summary of their findings.
On the opening day of the Forum, each
working group presented its summary in a plenary session of all 670 persons in attendance.
In addition to other plenary sessions, where international researchers presented papers on
treatment, care and research issues in breast cancer, all those attending participated in
"progressive group discussions." Participants indicated their primary areas of
interest (organized around the four Sub-Committee themes) and remained in the same
facilitated group for the duration of the Forum. During the first phase of discussions,
participants reviewed the points presented by each Sub-Committee and Working Group at the
opening plenary, and identified additional issues of concern. In phase two of the
discussions, participants established priority lists with respect to the identified
issues. In the final phase, the goal was to identify specific action strategies.
Approximately 12 people, chosen from divergent backgrounds, were in each discussion group.
Consequently, these groups proved useful grounds for cross-disciplinary exchanges between
researchers, survivors, physicians, and surgeons.
After each phase of the discussion
process, those participants who were also members of Sub-Committees or working groups
reported back to their respective committees. These committees then used the information
and comments to review and modify their initial research papers so as to make final
presentations at the closing plenary session.
Clearly, the Forum entailed a tremendous
amount of work on the part of participants. Those attending did not merely sit back and
absorb information; rather they were active participants in creating, refining and
reshaping existing knowledge respecting breast cancer care, treatment, and prevention, as
well as developing awareness of the importance of support and advocacy networks.
SELECTED HIGHLIGHTS FROM CONFERENCE PRESENTATIONS
A. Prevention and Screening
1. Environmental
Contaminants
Emerging evidence is sufficiently
diverse to warrant further studies of the relationship between breast cancer and
environmental contaminants such as polychlorinated biphenyls (PCBs) organochlorides (i.e.,
DDT and DDE) and polybrominated biphenyls (PPBs).
Results of a natural history study in
Israel showed a 30% reduction in the breast cancer mortality rate 10 years after the use
of many organochlorides was banned. However, this result may be an overestimation
based on rates of migration in the area.
There is physiological evidence to
support a relationship between breast cancer and environmental contaminants. Some
organochlorides can affect the production of endogenous hormones such as estrogen and
others can compromise the immune system. Fat tissue (such as breast tissue) is the primary
site for storing environmental contaminants; chemicals can remain there for a lifetime.
Researchers in the United States have found that fatty breast tissue from women with
malignant breast tumours contained more than twice as many PCBs and DDEs as the breast
tissue of women of the same age and weight who did not have cancer.
Large studies that control for other
risk factors associated with breast cancer will be needed in order to isolate the
relationship between environmental factors and breast cancer.
2. Genetic Markers for Breast Cancer
Research into the identification of
genetic markers is currently being done in "breast cancer families," where there
are a high number of female relatives with breast cancer. Current thinking in this area
indicates that only 2-5% of current breast cancers may be attributable to single gene
causes. Breast cancer also occurs in women without these genetic differences. Both the AT
gene and the gene identified as BrCa1 are linked to breast cancer. Researchers estimate
that the AT gene is carried by about 1.4% of the population and BrCa1 may be carried by
only 0.5 to 0.25% of women.
There are important concerns with
respect to the use of genetic screening: Should all young women be screened for breast
cancer genes? What should physicians tell young women screened with positive markers about
their potential risk levels? What types of counselling should accompany genetic testing?
What types of longitudinal studies should be undertaken to ensure that early
identification leads to decreased risk?
B. Research
In addition to identifying new areas of
needed research, greater attention should be paid to incorporating research findings into
the clinical practice of breast cancer physicians and surgeons; identifying and
eradicating barriers to such incorporation will make the transmission of new findings more
effective and timely.
Greater attention needs to be directed
to the ways in which health-care professionals provide information on diagnosis and
treatment options to women with breast cancer and women at risk.
The informational needs of women, in
light of their age, culture, language profile, etc., should be identified. Similarly,
aiding patients' decisions, and opportunities for enhancing women's informed choices in
breast cancer treatment, are areas where more research is needed.
The scientific research process should
be more fully investigated. Challenges to the bio-medical model of research and to the
exclusionary nature of the "peer review" model of evaluation of science research
should be taken into account in designing and conducting research into breast cancer.
Research studies that extend the dialogue between women and researchers should be made a
priority.
C. Treatment and Care
Attention needs to be paid to methods
and strategies for developing effective communication and effective listening skills for
physicians and other health care professionals. There was consensus that there should be
such training at the undergraduate, postgraduate and continuing education levels for
health care workers in Canada.
Other areas identified as important to
the overall treatment and care of breast cancer patients included: research into methods
for accurately assessing the risk of further cancer in women whose lymph nodes showed no
cancer at time of surgery; pain management in metastatic breast cancer (cancer that has
spread to other areas of the body); quality control of mammography; lumpectomy versus
mastectomy; and timely access to radiation treatment after a lumpectomy.
D. Support, Advocacy and Networking
Women newly diagnosed with breast cancer
often have extreme difficulty in accessing key information on their disease, including
treatment options. Women feel left out of decision-making with respect to processes that
seek to cure them.
There is an urgent need for greater
accountability on the part of the health care system. Too many women receive inaccurate
diagnosis and many women feel frustrated and unsatisfied with current treatment options,
which they describe as "cut, slash and burn" techniques.
Women need greater access to
survivor-directed support and networking centres where they can share their feelings and
experiences and talk openly about them.
There is support for a national network
of breast cancer survivor groups tied to the principles of independence, broad
representation across the country and autonomy. Such a network would allow women living
with breast cancer to speak with a united voice on issues that affect them directly. These
women also see a role for themselves in lobbying for breast cancer research money, the
direction of research projects and the translation of research results into clinical
practice.
POST-FORUM DEVELOPMENTS
Since the Forum, all the materials
generated in group discussions have been compiled and circulated to the chairs of the four
Sub-Committees. On the basis of this information, Chairs are expected to modify and rework
their initial papers and, working with Health Canada, develop one consensus document. It
is anticipated that this report will form the basis of an "action plan" to help
direct and inform the efforts of the federal, provincial and territorial governments and
others concerned with breast cancer.
Health Canada, the Canadian Cancer
Society, the National Cancer Institute of Canada (NCIC) and the Medical Research Council
of Canada are partners in the Canadian Breast Cancer Research Initiative (CBCRI). The
federal government has committed $20 million over five years to the CBCRI, and the
National Cancer Institute of Canada has committed $10 million with funds raised by
the Canadian Cancer Society. An additional $15 million is expected to be raised
through the Corporate Fund for Breast Cancer, a partnership venture of the Royal Bank of
Canada, the Canadian Breast Cancer Foundation, and the Canadian Cancer Society.
The existence of the CBCRI has, according
to the Co-Chair of its management committee, already significantly increased the number of
applications for money for research on breast cancer. The administration of the initiative
is carried out by the NCIC, which has already received 116 new requests for more than
$12 million in research grants.
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