Parliamentary Research Branch


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.