Meeting Summaries

World Conference on Breast Cancer

June 5-8, 2002 Victoria, B.C., Canada

This is the third in a series of conferences held in Canada. First held in 1997 in Kingston, Ont, then in 1999 in Ottawa. Tapes of most sessions are available.

The participants are primarily patients and advocates from around the world, gathered to exchange information and experiences with breast cancer.

Wednesday, June 5, 2002

Plenary 1: A look at breast cancer in the 21st century- featured Dr. Annie Sasco, MD, PhD, an internationally-known scientist with the World Health Organization (based in France).

She told the audience that there are now ten million new cancer cases annually with 4.7 million women and 5.3 million men diagnosed. Mortality is around 2.7 million women and 3.5 million men annually. She estimated that about 22 million people are living with cancer.

1,050,000 new breast cancer cases are diagnosed annually worldwide with an estimated 370,000 deaths. Breast cancer has now surpassed the incidence of cervical cancer in the developing world.

The highest rates of breast cancer are found in the Netherlands, U.S.A., Denmark, France, Australia, New Zealand, Belgium, Canada, Sweden and Uruguay. The lowest rates are in Korea, Guinea, Oman, Laos, Congo, Ruwanda and Haiti. Between 1980 and 2000, the number of breast cancer cases has almost doubled.

Dr. Sassco reminded the audience that when women from any of the countries with lower rates move to countries with higher rates, they or their daughters soon catch up to the host country’s levels.

Dr. Papa Toure, MD, Marie Curie Institute, Senegal explained to the audience that the average age of diagnosis in African women is much younger than in developed countries. In fact the early ages in Africa can range from 10-28, in Asia 15-20 versus 50-80 in the more developed countries, although as many of us know women as young as 20 have been diagnosed in the U.S.

Dr. Toure pointed out that most African women have many pregnancies and are generally no older than 20 at their first. They tend to nurse their infants for a long period of time and may have as many as 5 children (6 pregnancies overall). The mean age at menopause is 48. 56% of the population with breast cancer has 4 or more children.

73.5% of the population when diagnosed are at Stage III. 80% are treated with radical mastectomy. One year survival is 76% and 5 year is 10.5%, but as Dr. Toure points out, it is difficult to follow most patients.

He stated that there are lost opportunities in informing women of the symptoms of breast cancer, since women generally do have access to primary care for mother/child. He believes nationwide programs can be instituted through TV, religious groups, charities, and women’s organizations and groups.

Ann’s NOTE: I remember hearing something quite similar at the last conference. I was unable to question Dr. Toure to discover if he felt things had improved from two years or four years ago.

Dr. Eike-Henner, W. Kluge, PhD spoke about Profit, Privacy, Access and Informed Choice. (University of Victoria, Canada).

He pointed out that the World Medical Association accepts that all women must be supplied with information at a level and manner they can understand. And a confident, voluntary choice should be made.

Ann’s NOTE: This is basically what The Annie Appleseed Project stands for. We believe a fully informed treatment decision is the appropriate one, whatever decision that is.

Dr. Kluge also spoke very strongly against the patenting of genes. He said they were elemental and NOT subject to ownership. He received a loud round of applause at that point.

He believes the biotech industry has a right to their products and any modified genes however.

Plenary 2: Lifelong Impact – Personal to Political

Speakers were Dr. Iris Zavales Martinez, PhD from Puerto Rico, Musa Mayer, MS, MFA, Freelance journalist and author, USA, and Helen Lynn, Health Coordinator, The Women’s Environmental Network, UK.

Dr. Martinez ended her talk by showing slides of healthy and nutritious products that patients could use.

Musa Mayer spoke about cure and what it means to patients and others.

Helen Lynn has been working to make environmental connections to breast cancer.

Video presentations were held during the lunch hour and a choice of several very interesting productions were offered. (My Left Breast – Gerry Rogers; Fighting for our Future:Young Women United Against Breast Cancer – Randi Rosenberg, USA; Exposure – Dorothy Goldin-Rosenberg, Canada; Titless Wonders – Kay Larking, New Zealand and Rosa: A Documentary –Danny Meneses, Philippines).

Plenary 3: Primary Prevention featured Dr. Sandy Weeks, MD Flinders Medical Centre, Australia, speaking on Today’s Theories on Risk Factors.

Dr. Weeks discussed the possibility that the insertion of a gene (in genetically-modified foods) could possibly trigger other, unknown changes and this is terrifying.

Dr. Devra Lee Davis was supposed to present on Environmental Impact and Lifelong Exposure, but she was unable to attend. Dr. Annie Sasco spoke from Devra’s slides. A summary of Devra’s talk can be found on our Meeting Summary Page.

Dr. Katherine Wynne-Edwards, PhD, Queen’s University, Canada (a biologist) spoke about the changes in ‘modern’ women versus our hunter-gatherer ancestors. The point of her remarks was that we have so much more exposure to endogenous estrogen than our foremothers. She told the audience that women in New Guinea are not allowed to handle discorea yams since they act estrogenically (in fact serve as the base for some ‘natural’ estrogen). She suggested foods may have been preferentially developed by our early ancestors, to produce estrogen stimulation.

She told us that science can now measure estrogen in our saliva. Technology therefore allows us to look at each individual’s estrogen levels.

She described a project she is working on called “A Partnership Model –Daughters w/o breast cancer”. This will be a Canadian study where girls age 9-17 will ‘spit’ into cotton and place the material into the freezer. The ‘spit’ will be collected and analyzed for risk.

Plenary 4: The Future Through the Eyes of Medicine offered talks by Rowan Chlebowski, MD, Harbour-UCLA Research & Education Institute, USA and

New Directions in Cancer Systemic Therapy by Brian Weinerman, MD BC Cancer Agency, Canada and

Mammography and Beyond by Dr. Sharyl Nass, PhD, Institute of Medicine, USA (whose information can be found on their website).

Workshops were held from 4:45 – 5:45 PM, consisting of a variety of topics related to self-help issues, lymphedema treatment, barriers to cancer education in developing countries, and becoming an effective breast cancer advocate.

Thursday, June 6 Breakfast Roundtables were held at 7:30 AM offered by a variety of presentees from many countries and on many topics. Ann Fonfa presented on Clinical Trial issues.

Concurrent Sessions were held next lasting about 90 minutes each. Topics included environmental issues, patient communication issues, geography as barrier, new ideas and treatments, drug therapies and clinical trials.

Ann Fonfa presented at C6: Clinical Trials and Patient Participation. One of the presentations was on “Stakeholder Input: Preparing the Way for Good Quality and successful Breast Cancer Clinical Trials – The UK HRT Trial Experience.

Presenter Claire Dawson made it clear that the participants wanted lots of information. . It was thought that no one would read ‘too much’ information. But the professionals were confounded in this instance.

Ann Fonfa presented on The Patient Track for Clinical Trials which suggests a series of trials whose goal is to make life easier for patients, understand more about natural products and therapies, and generally answer the questions that matter to patients right now.

The next event was an International Hearing with panel presentations by various Ministers of Health (Angola, Malta, Hong Kong, Iceland, Brunei Darussalam, Uganda and others representing various cancer screening or treatment programs (Barbados, UK, Bangladesh, Canada).

There were questions from the floor on many topics. Then the panel responded to them and to each others’ talks.

Later there was an Open Forum on International Exchange asking how the situation for women could be improved and what the delegates would do when they left the conference and returned home.

Later that afternoon, the workshops were held (repeats of Wednesday afternoon).

Friday had more Concurrent Sessions: Factors in early diagnosis, screening and staging; Psychosocial experiences; Mammography screening-progress and precautions; Risk factors in breast cancer (including light at night and silicone implants); Approaches to treatment to meet the needs of patients; Economic impact of breast cancer.

The evening Concurrent Sessions included: Complementary therapy use by breast cancer patients.

Jimmy Chan, a naturopathic physician from Canada spoke about Naturopathic medicine.

Lynda Balneaves, PhD candidate from Canada spoke about Explaining complementary therapy use by women living with breast cancer. Julie Gralow, MD from the U.S.A. spoke about Combining complementary and conventional therapies in medical practices.

Other sessions included: Genetic testing and breast cancer; Early onset breast cancer; Treatment results and barriers to success in developing countries; Education –an empowerment process and Metastatic breast cancer and quality of life.

Saturday began with breakfast roundtables with the same topics as Thursday.

Concurrent Sessions included: Complementary therapies as part of treatment, speakers included William Jia, PhD, from Canada who spoke on Cytoxicity and Synergistic Effect of Careseng on Breast Cancer, Gail Long, PhD, from Canada on Randomized clinical trial (RCT) to test whether placebo reiki can be standardized for an RCT with breast cancer patients, Sat Dharam Kaur, ND from Canada (we have other reports of her talks) spoke on Hormone balancing in breast cancer prevention and recovery, and Jimmy Chan, ND from Canada spoke on Clinical experience of a novel non-toxic cytotoxic agent found in Panax Ginseng in a variety of breast cancer cases and other cancer types.

Ann Fonfa attended: Does the money speak too loudly? Offering information from a journalist from India, Nitin Bahuguna who made connections on advertisers and topics, stating that women’s health was easily disregarded and under-reported. She also said that there were many local languages and breast cancer issues were not addressed at all in some. She felt that perhaps the use of celebrities in promoting advocacy messages might be helpful, using shows and plays at the village level, and using school-based educational programs might advance the information availability.

Sharon Batt, Professor and author of Canada questioned whether pharmaceutical funding clouded advocates’ perspectives . She suggested that it was ludicrous to imagine an equal ‘partnership between grass-roots advocacy organizations and the most profitable industry on the globe. She suggested that pharmaceutical, chemical tobacco, oil, health treatment or insurance companies would be funders to avoid.

Laura Shea of Prevention First spoke about their grass-roots project to focus on environmental causes. She talked about the way risk reduction is presented in ‘relative’ terms and the benefits of using a drug like Tamoxifen is generally reported as such. The risks of the drug are usually mentioned in absolute terms. This creates a greater difference and makes the advantages sound enormous. She suggested that if the situation was presented in the same terms, it would be as a 47% advantage in reducing recurrence using Tamoxifen and a 200-400% increased risk of endometrial/uterine cancer. Or another way to state this is 15% absolute benefit versus 1% absolute risk of endometrial/uterine cancer. (Ann’s NOTE: This has changes somewhat as the spector of uterine sarcoma risk has now been found. See our section on Tamoxifen on the Breast Cancer Issues page).

Other sessions: Meeting the information needs of women in relation to breast cancer; Systemic and cultural barriers to diagnosis and treatment; Molecular Research, genetics and breast cancer; Early detection and disputed methods.

The next set of Concurrent sessions featured: Sentinel node; Aggressive breast cancer; Promoting breast health and education, Battling dragons: an exercise program to support survivors and Education, treatment and support for women with lymphedema.

Ann Fonfa was one of the speakers on lymphedema (LE). The first speakers talked about a study they had done on patient education for prevention. They surveyed patients and healthcare professionals to understand how much information was known and made available to patients. Unsurprisingly to any with LE, only a few women are fully informed before consenting to either axillary dissection or radiation to the axilla.

Ann was asked to speak about her personal experiences with LE. Those comments (or similar ones) can be found on the Breast Cancer Issues page under Lymphedema, along with lots of advice and information on this chronic problem.

The final Open Forum was held on Life After Breast Cancer.

The final Concurrent Sessions included: Titless Wonders (discussion on film shown on Day 1); Estrogen, hormone replacement therapy and breast cancer risk; Barriers to effective screening and treatment (speakers from the Philippines, Vietnam, Russia and Canada); Family history and breast cancer risk; Bridging the gap: sharing the realities and Empowerment and advocacy for change.

Ann Fonfa was one of the speakers on Advocacy. Danny Meneses from the Philippines discussed how he and his late wife Rosa, began the Philippine Breast Cancer Network. This group strongly believes in the use of natural products and has met great resistance from the local medical community. They are in the process of building a patient retreat.

Another speaker was Ranjit Kaur, BSc from Malaysia. She talked about the personal difficulties of women losing their breasts. Her topic was Breast Cancer: Is it an individual or social issue? This was quite fascinating as she mentioned that men can be taunted by their peers for having a wife with one breast.

Patrick Terry discussed Patient advocacy in the U.S. and discussed his experiences as the parent of an ill child.

Ann Fonfa dedicated her talk to Peggy Landes, a long-time friend and breast cancer advocate who died in May, 2002. She raised many questions and pointed out that the issues raised by speakers from other countries throughout the conference were very similar to issues faced in the U.S. in the past. She stated that it seemed like a continuum of events that leads all in the same directions. Developing nations do not have much access to medical care, the men control women’s access when there are clinics or doctors, women have many children and little power. This was true in the U.S. just 70 years ago. As things change, other problems arise. We must learn from each others’ experiences since we have gone through them or will go through them in our future.

A final plenary was held to discuss the Precautionary Principle and to ask delegates to vote in support of a statement put out by a group of environmentally concerned activists.

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