Breast Cancer and B.C. Women
A Report to the Minister of Health
from the Minister's Advisory Council on Women's Health

Executive Summary

"Every year in British Columbia, breast cancer is diagnosed in approximately 2,500 women and causes more than 500 deaths, second only to tobacco-induced lung cancer as the cause of cancer deaths amongst women."

Provincial Health Officer's Report, 19941

Members of the Minister's Advisory Council on Women's Health determined that further action to address issues surrounding breast cancer is required. We present our recommendations for action around five major headings:

•   Prevention
•   Screening and Diagnostic Services
•   Treatment
•   Information and Support
•   Research

We have used available data to develop our report, but we emphasize what follows comes from a women's health perspective and not from any particular professional or organizational view. We suggest that to date, this analysis, from a women's perspective, has been missing.

Our recommendations are as follows:

1.0	Prevention The advisory council identifies that:
1.1	More research is required to determine the factors that contribute to breast cancer.
2.0	Screening and Diagnostic Services
	The Screening Mammography Program is the major preventive health program for B.C. Women. Currently, between six to eight women out of 10 do not use this program that costs the system more than $6 million per year. We need to make this program work more effectively or reconsider its utility in light of other competing priorities.
2.1	More effort needs to be made to train women community volunteers to teach breast self-exam and to increase the skills of health professionals who conduct annual clinical breast exams.
2.2	More effort has to be made to increase the SMP participation rates of women 50 to 70 years and those groups within this broad group with low participation rates.
2.3	Less emphasis should be placed on recalling women in their 40s to return to the SMP.
2.4	There should be a concerted program to educate physicians and women as to the proper location to obtain a screening mammogram. Furthermore, there should be disincentives to the inappropriate location.
2.5	There should be an external review of the SMP and other diagnostic radiology facilities with regard to ending the inappropriate and costly use of diagnostic mammography for screening purposes.
2.6	Immediate action should be taken to address the lack of progress in the special project with B.C. Women's Hospital and the B.C. Cancer Agency to reduce the wait time between abnormal mammograms and follow-up.
3.0	Treatment
	The advisory council is concerned about two aspects of treatment: women's participation in their own care; and access to breast conserving surgery.
3.1	We recommend that more should be done to help women participate in their own care once a confident diagnosis has been met.
3.2	We recommend that each hospital in the province be asked to provide and monitor the rates for breast conserving and radical surgery.
4.0	Information and Support
	The advisory council recommends that information and support to women with breast cancer be strengthened, with specific recommendations being that:
4.1	A media advocacy campaign be initiated to emphasize that women are living with breast cancer rather than the current press that makes women live in fear.
4.2	A concerted effort be made to promote the availability of the 1-800 cancer information line throughout B.C.
4.3	The Minister of Health ask the B.C. Cancer Society, the B.C. Cancer Agency, and the SMP to review their communications to women with breast cancer, with regards to the new thinking around health determinants.
4.4	The minister ask the regional health boards to assist in the development of peer support groups for survivors of breast cancer throughout the province.
5.0	Research
5.1	We recommend that more research be encouraged on prevention, self-care strategies for coping with cancer and the role of environmental contaminants.

Breast Cancer and B.C. Women

"Every year in British Columbia, breast cancer is diagnosed in approximately 2,500 women and causes more than 500 deaths, second only to tobacco-induced lung cancer as the cause of cancer deaths amongst women."

Provincial Health Officer's Report, 19941

The Minister's Advisory Council on Women's Health was formed in September 1994. In October 1994, coincidentally Breast Cancer Awareness Month, then Minister of Health, the Honourable Paul Ramsey, announced special funding of $750,000 over five years to support improved breast health for B.C. women. The council formed a subcommittee to study this issue in order to be able to better understand the system of care for B.C. women and needed improvements.

Members of the Minister's Advisory Council on Women's Health determined that further action to address issues surrounding breast cancer is required. We present our recommendations for action around five major headings:

• Prevention
• Screening and Diagnostic Services
• Treatment
• Information and Support
• Research

We have limited resources for research and professional analysis but we do have our experiences and our networks and the experiences of our sisters, mothers, grandmothers, nieces, daughters, friends and coworkers who have struggled with breast cancer. We have used available data to develop our report, but we emphasize what follows comes from a women's health perspective and not from any particular professional or organizational view. We suggest that to date this analysis, from a women's perspective, has been missing.

 

1.0	Prevention
1.1	More research is required to determine the factors that contribute to breast cancer. We are dismayed that the only preventive strategies of the current medical thinking are actually secondary preventive strategies such as screening mammography and tamoxifen treatment to high-risk women. Breast cancer is a mysterious, life threatening illness to women and physicians alike. Epidemiological surveys have not identified risk factors that would enable true prevention.
2.0	Screening and Diagnostic Services
2.1	More effort needs to be made to train women community volunteers to teach breast self-exam and to increase the skills of health professionals who conduct annual clinical breast exams. At present, our best preventative strategy is early detection. Women who detect the breast cancer in situ have a 95 per cent survival rate; if it is not detected in the breast and has metastasized to the rest of the body, survival rates are much lower. Although the Canadian Cancer Society emphasizes a three-step process involving monthly breast self-exam, annual clinical breast exam and mammography, the Ministry of Health or the Screening Mammography Program do not monitor the practice of all three aspects of care. Data from the North Shore health unit's 1990 health promotion survey indicated that only 30 per cent of women practice monthly breast self-exam.2 Breast self-exam and clinical breast exam, like cervical cancer screening, are highly personal for most women. They are also technical procedures that are infrequently performed well. The council recommends that for some procedures, access to a qualified woman practitioner may be a significant and essential service. As only about 20 per cent of the province's3 doctors are women, and this percentage is even lower in rural communities, it may be more acceptable to women to train nurses and lay women to teach breast self-exam and to train physicians or other health professionals to do skilled clinical breast exam. The council suggests that if women saw breast self-exam and clinical breast exam as a regular part of well-women care, the door to participation in screening mammography would be opened for many more women.
2.2	More effort has to be made to increase the SMP participation rates of women 50 to 70 years and those groups within this broad group with low participation rates. Screening mammography (a soft tissue X-ray of the breast) is the professional's most important strategy for early detection of breast cancer. Since 1988, the Ministry of Health has been funding the B.C. Cancer Agency to operate the SMP. The 1995/1996 Ministry of Health allocation to the program is $6.6 million. In women's magazines and daily newspapers, women read of the debate as to the efficacy of screening women 40 to 50 years. In essence, the success of SMP in diagnosing cancers seems to vary with the density of the breast tissue which changes as part of the menopausal process. Our recommendations are guided by three major observations:

	i)	A number of large, well-designed randomised controlled trials in North America and Europe have shown that early detection by SMP can reduce breast cancer mortality by at least 20 per cent in women aged 50-70.4
	ii)	By health region in B.C., the percentage of women ages 50 and older who received mammograms in 1992-93 ranged from 20 per cent (Upper Fraser Valley) to 39 per cent (South Central).5 Another way of saying this is, at the present time, between six to eight B.C. women out of 10 do not participate in this publicly-funded preventive health program. At the same time, many women aged 40 to 49 are participating in breast screening, when its value remains unproven to them. A recent study concluded that "making the switch from the low value mammograms in women younger than 50 and older than 75, to the high value mammograms in women between ages 50 and 75 would simultaneously decrease the number of breast cancer deaths by about 33 per cent and reduce costs by about 30 per cent".6
	iii)	Three quarters of all breast cancers are diagnosed in women over 50.7
		We therefore recommend that the promotion of the screening program should be targeted at women over 50. Within this group, we acknowledge that there is reason to suspect that special outreach initiatives will have to be instituted to reach aboriginal, ethno-cultural, disabled or economically disadvantaged women.

2.3	Less emphasis should be placed on recalling women in their 40s to return to the SMP. If women have a family history of breast disease, or any reason that causes breast cancer to be of concern, they should have full access to a screening program. However, the council notes that B.C. is the only publicly-funded screening program where women between 40 and 50 are still recruited. Most researchers in the industrialized world report that pre-menopausal breast tissue is too dense to give accurate readings from a mammogram. Despite this evidence, the B.C. Screening Mammography Program continues to recruit women in their 40s to return to have subsequent mammograms. We suggest that less emphasis should be placed on recalls of women in their 40s and more attention directed towards women 50 and over.
2.4	There should be a concerted program to educate physicians and women as to the proper location to obtain a screening mammogram. Furthermore, there should be disincentives to the inappropriate use of diagnostic mammography for screening purposes.
	At the present time, half of all B.C. women obtaining a yearly screening mammogram do so through a private x-ray facility rather than attending the SMP program.8 This private facility test costs the health care system $73.75, compared to $49.37 for a SMP mammogram.9 The additional money spent on the more expensive private radiology facility mammogram could be directed towards other pressing women's health issues. The advisory council suggests that if B.C. women were made aware of this difference in cost to the health care system, they would go to the less costly facility for the screening mammogram.
2.5	There should be an external review of the SMP and other diagnostic radiology facilities with regard to ending the inappropriate and costly use of diagnostic mammography for screening purposes.
	The SMP is a publicly-funded program that can provide high quality screening to the women of British Columbia. Members of the present executive and board of the program include private practising radiologists, many of whom have financial interests in private radiology facilities. The advisory council suggests that, while it is important to have expert clinical opinion available to the SMP and full participation of community physicians, it is also essential, in the spirit of New Directions, that community-based women with an interest in women's health should be involved in monitoring the effectiveness and efficiency of the major preventive health program for B.C. women.
2.6	Immediate action should be taken to address the lack of progress in the special project with B.C. Women's Hospital and the B.C. Cancer Agency to reduce the wait time between abnormal mammograms and follow-up.
	When a woman's screening mammogram is interpreted as abnormal, she will be contacted and asked to have a more intensive follow-up examination. Women with persistent abnormalities may undergo a biopsy. The average wait time for a woman in B.C. who requires a biopsy for a definitive diagnosis is nine weeks.10 While 97.4 per cent11 of all abnormal screening mammograms subsequently prove to be normal, this wait period of not knowing can be a terrifying experience for any woman. We are confident, if pushed, that the health care system can reorganize to decrease the time it takes to arrive at a confident diagnosis of breast cancer. While we applaud the 1994 funding to the B.C. Cancer Agency and B.C. Women's Hospital to mount a pilot project to address this issue, we are concerned about the lack of progress. Council members have told us women in their communities would prefer a breast health program located at Women's Hospital rather than at the B.C. Cancer Agency, especially when so few abnormal screens turn out to be cancer.
3.0	Treatment
	The advisory council is concerned about two aspects of treatment: women's participation in their own care and access to breast conserving surgery.
3.1	We recommend that more should be done to help women participate in their own care once a confident diagnosis has been met.
	Information is power and research has shown that when patients are fully informed of the risks and benefits of treatment, dramatically different surgical practice follows.12 The council notes that more needs to be done to rebalance the relationship between women and their doctors. We believe that a woman with a cancer diagnosis would truly have choices when she knew her treatment options and the availability of different treatment options in her own community. Conversely, if women knew that choice was not available locally, they might elect to go to Vancouver or Victoria to obtain care. We applaud the use of the 1-800 cancer information line, but note from our perspective that this telephone line is not being marketed adequately to allow for optimum use.
3.2	We recommend that each hospital in the province be asked to provide and monitor the rates for breast conserving and radical surgery.
	The treatment of breast cancer has undergone a number of changes in recent years. First, radical mastectomy was replaced by simple mastectomy because the disfigurement associated with the radical surgery provided no increase in life expectancy. Then, in 1985, a well-designed clinical trial showed that simple excision of a breast tumor (lumpectomy) followed by radiation provides survival rates equivalent to a simple mastectomy.13 We realize that the breast conserving surgery approach is limited to women in those communities (Vancouver and Victoria) where women have access to concurrent radiotherapy. We applaud the ministry's recent decision to provide cancer clinics in Surrey and Kelowna and realize that this will do much to increase B.C. women's access to breast conserving surgery. We also know that patterns of practice are slow to change and we urge the Ministry to monitor the regional rates of surgery and publish the information regarding communities where aggressive surgery is the norm. We feel that the establishment of clinical practice guidelines and the development of continuing education programs for surgeons in the area of breast cancer would be an appropriate start to address the discrepancies in patterns of practice in the province
4.0	Information and Support
4.1	We recommend that a media advocacy campaign be initiated to emphasize that women are living with breast cancer rather than the current press that makes women live in fear. Statistics about breast cancer surround us. The most quoted is the "one in nine" life time chance that a women might experience breast cancer. But we forget that a cancer diagnosis does not necessarily translate into a cancer death. With mammography, deaths among women aged 50 to 70 can be reduced by well over 20 per cent.14 This year in B.C., more than 2,600 women will be diagnosed with breast cancer and 600 will die. Three out of four women with breast cancer live at least five years after their cancer is diagnosed.15 The advisory council acknowledges that many B.C. women experience breast cancer as a private battle. Current emphasis on prostheses, breast reconstruction and implants help to keep the struggle less visible and private. The advisory council suggests that information and support need to be improved for B.C. women. Women should also have access to current information relating to the existence and content of clinical practice guidelines.
4.2	We recommend that a concerted effort be made to promote the availability of the 1-800 cancer information line throughout B.C.. While we believe the development of the 1-800-663-4242 cancer information line for women with breast cancer is very important, we do not believe that the availability of this line is well known. The government's PreventionCare program could be called into action; women's groups throughout the province should be given the information to disseminate; the 3,000 women who attend a yearly fund raising breakfast for breast cancer should be enlisted in the project. This is a networking task for the women of B.C. We acknowledge the work of the members of the B.C. Branch of the Canadian Breast Cancer Foundation in raising the community's awareness of breast cancer as an issue.
4.3	We recommend that the minister ask the B.C. Cancer Society, the B.C. Cancer Agency, and the SMP to review their communications to women with breast cancer, with regards to the new thinking around health determinants. The determinants of health analysis currently advocated by the leaders of health reform would suggest that women who are poor, culturally or linguistically disadvantaged or who live in rural or remote areas are more at risk for of health status and less likely to have access to available programs. With reference to breast cancer, we suggest that resources to inform women are not appropriately targeted. The advisory council would like to see communications to women that are written in plain language, large type and in colours designed to maximize communication to older disadvantaged women. We note that the current colours of the SMP communications (pink and grey) are rated as among the most difficult colour combinations to read. We recommend that survivors be involved in all communication development.
4.4	We recommend that the minister ask the regional health boards to assist in the development of peer support groups for survivors of breast cancer throughout the province. Many women affected by breast cancer experience a sense of isolation and loneliness not effectively addressed by established service providers. Research has proven that support groups improve longevity and quality of life for survivors.16 Support groups provide a continuum of experientially based support from self-help and mutual aid to advocacy in improving the treatment system for other women. While self-help has flourished in coping with other conditions such as mental illness, alcoholism and dementia, the council notes that self-help for breast cancer survivors has been slow to develop in B.C. We applaud what exists; we think there should be more. We believe that there is a strong role for self-help survivors to play in advocating improvements in the breast cancer care system to women. In examining the experience of survivors in Ontario and Quebec, the Council believes there is value in creating a healthy tension between those who provide care and those for whom the care is intended. We would like to see support for more survivor-led initiatives.
5.0	Research
5.1	We recommend that more research be encouraged on prevention, self-care strategies for coping with cancer and the role of environmental contaminants. It has only been since the National Breast Cancer Forum in 1993 that survivors were allowed input into the development of the breast cancer research agenda. As the breast cancer activist Sharon Batt notes in her book, Patient No More, "biological researchers occupy most of the research turf."17 Prevention and research into the emotional aspects of cancer remain relatively less studied. The council would like to see more consumer involvement in determining the research agenda. There seem to be several areas that require more attention. Qualitative studies are important, particularly those noting women's experiences with new treatments and those exploring why so few choose to participate in the screening program. The advisory council would also like to see research on the role of alternative therapies in coping with breast cancer treated by current medical therapies and the long term role of environmental contaminants on the incidence of breast cancer. Of particular concern is the potential role of organochlorines in the development of breast cancer.

Conclusion

This paper represents the work of the Minister's Advisory Council on Women's Health. Because of the magnitude of the problem, and its impact on women's health, we are necessarily critical of the present situation.

We are particularly concerned with the SMP. It represents an annual cost of $6.6 million, being the major preventive health program for B.C. women. We do not believe it is functioning as well as it might. Only 23.5 per cent of women 50 to 69 use the program.¹⁸ Too many screens are performed in the wrong setting, causing the health care system unnecessary costs.

We are also concerned about the lack of progress in implementing the special project to reduce the lag time between a positive screen and a confident diagnosis of cancer.

We acknowledge the hard work of those currently working in the system to address breast health and breast cancer care. Our intent is simply to contribute towards creating better care for B.C. Women.

Footnotes

1. Ministry of Health and Ministry Responsible for Seniors. A Report on the Health of British Columbians. Provincial Health Officer's Annual Report. Victoria, B.C., Canada: Queens Printer, 1994. p 60.
2. North Shore Health Unit (1990). North Shore Health Promotion Survey. North Vancouver, B.C.: Unpublished report.
3. 22.7 per cent of doctors, including specialists, are female. (1,598 out of 7,029 distinct practitioners) Medical Services Plan Fee-For-Service records, 1994/95.
4. Provincial Health Officer's Annual Report. (1994) Op cit. p 61.
5. Provincial Health Officer's Annual Report. (1994) Op Cit. p 62.
6. Eddy (1994) cited in the Provincial Health Officer's Report. (1994) Op cit. p 62.
7. National Cancer Institute of Canada: Canadian Cancer Statistics, 1995, Toronto, Canada, 1995. p 40. Using figures on new cancers for age groups over 50, 13600/17700 = 76.8 %.
8. 1993/1994 Ministry of Health data estimating the number of women receiving screening mammography through SMP and private MSP billing facilities.
9. The cost of SMP bilateral mammograms is given in the 1993/1994 Annual Report of the Screening Mammography Program of British Columbia page 31. The cost of bilateral mammograms done in private facilities and billed to MSP is from the Medical Services Plan current Fee Item records.
10. Summary Report, Quality Improvement Project, Screening Mammography Program, July 21, 1995. p 3.
11. Provincial Health Officer's Annual Report. (1994) Op Cit. p 61.
12. Wennberg, J. "On the status of the scientific basis of clinical medicine." cited in Rachlis, M. and Kushner, C. Strong Medicine. Toronto: Harper Collins, 1994. p 100.
13. Provincial Health Officer's Annual Report. (1994) Op Cit. p 60.
14. Olivotto, Ivo et al, "Who Benefits From Screening Mammography?" B.C. Medical Journal (Vol. 37 no. 7, July 1995): p 469.
15. National Cancer Institute of Canada: Canadian Cancer Statistics, 1995, Toronto, Canada, 1995. p 52.
16. Speigel, D., Bloom, J.R. et al, "Effects of Psychosocial Treatment on Survival of Patients with Metastatic Breast Cancer." Lancet (Oct 14, 1989): pp 888-891.
17. Batt, S. Patient No More: The Politics of Breast Cancer. Charlottetown: Gynergy Books, 1994. p 292.
18. Olivotto. (1995) Op Cit. p 469.

Members of the Council can be contacted by writing to:

Minister's Advisory Council on Women's Health
c/o 6th Floor
1515 Blanshard Street
Victoria, B.C.
V8W 3C8

Phone: (604) 952-1050
Fax: (604) 952-1052

Last Revised: July 21, 2005