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1st World Conference on Breast Cancer 1997

From meetings of International Conference on Advocacy and the World Conference on Breast Cancer, that took place in Canada in June 1997, the following information is offered:

First, a world overview from a talk by Dr. Annie Sasco of The International Agency for Research on Cancer.

Breast Cancer is the number one cancer in women in both the developed and developing world. Deaths in 1997 were close to 400,000 and the estimated number of new cases is almost 900,000 with 500,000 in the developed countries. This represents an almost doubling of cases in the last 25 years.

Iraq: In common with developing nations, breast cancer incidence is increasing and diagnosis is mostly at late stage. A comparative look via pathology at tumors from fine needle aspiration yielded the information that a very high rate of malignant breast tumors in Iraq are aneuploid (poorly differentiated cells). Fine needle aspiration is being done there.

Kuwait: Paget’s disease of the nipple was diagnosed 3.4% of the time during 1985-1995. This is usually an indication of tumor within the breast and could represent an early diagnosis. 72% of the cases had ductal carcinoma while 28% had Stage 0 or DCIS. 40% of the cases had positive lymph nodes. (This is the same ratio we have in the U.S.). Median survival of this group was 46 months. (Ann’s NOTE: I had Paget’s disease in my right breast but in my case (original diagnosis-invasive lobular) there was no tumor. It was a Stage 0 but I had already had a mastectomy thinking it was invasive lobular (known to be likely to spread to the second breast).

Nigeria: (Southeastern) Over 100,000 Nigerians develop cancer annually. The majority of patients arrive at the medical centers at a late stage, resulting in a high mortality rate. Group discussions were held among local women in seven rural areas. The women told that belief in ‘witchcraft’, supernatural forces, fate and reincarnation delayed their going to a hospital. There is no government health plan and Western treatment is completely out of reach to regular people. The wealthy travel to Europe for treatment. Other areas in Nigeria have similar problems. Two doctors I spoke to mentioned that a normal patient load is 150 patients per day. They can only give 5 minutes to each. Women are upset if doctors examine their breasts if they come to the clinic for another reason. Most women believe that cancer is a death sentence. Ann’s NOTE (some studies in the U.S. have indicated that primary care practitioners only give patients 7-12 minutes).

Another view from Nigeria discussed the use by indigenous populations of herbs and medical fauna/flora species. “These communities utilize their wildlife resources for the present and future generations. These resources are being seriously threatened by various environmental practices.” This speaker believes, as do many who look at local plants, that disease treatment may be forthcoming from these endangered herbs and fauna.

Spain: Galicia, an autonomous community in the northwest part of the country has a population of 2.8 million. Breast cancer is the leading cause of death for women. A mammographic screening program has been instituted for women age 50-64 and is covered by National Health insurance. 74% of cancers thus detected were early stage.

China: Recent research indicates that the P53 gene has a more important role in familial breast cancer than non-familial. Two studies were recently produced; one examined serum ferritin (SF) which was found to be significantly elevated among women with tumors. This may serve as a marker for disease when serial assays are done. The second study looked at the addition of BCG auto-tumor vaccine immunotherapy. (NOTE: This is something proposed by Dr. James Holland of Mt. Sinai Hospital in New York also).

Guyana: There are no facilities to treat cancer patients with Western medicine in this country. Fundraising takes place so that individuals can go to other countries (often Trinidad) for Western treatment. There are local herbalists and many concerns about the environment.

United Kingdom: With one of the highest rates of breast cancer in the world, advocates and government have set targets for improving the quality of services. Specific guidelines have been issued for physicians. A training program for advocates is now part of the government initiative. Mortality is high here. Some time ago a neighborhood-based project was begun to identify cancer clusters and see if they could be correlated to environmental pollution.

Netherlands: Health complaints and environmental circumstances are coded and saved in a national database accessible to researchers and institutes.

Africa: As a continent, the frequency of incidence is on the rise everywhere. Cervical cancer had been by far the number one malignancy, now breast cancer is equal to it. It is the 4th leading cause of death in women and the leading cause in ages 45-50. There is a much lower age of diagnosis, women bear an average of five children, breastfeed them all, and start menarche at about age 13. These women have none of the risk factors identified in the developed countries. African women DO NOT have a high fat diet; they use no meat, alcohol or tobacco. Most go to the hospital as a last resort. All over the continent, there lingers a belief in magic-that the cancer victim has been cursed and needs this curse removed to get well again. It was suggested that a way to educate the women was to work through the mother/children protection centers. Women come to them to give birth and are seen about 3 times during each pregnancy. These centers could be used to distribute information, do clinical breast exams and teach BSE.

Mexico: Using local, community-based midwives is the method chosen here. The midwives are taught how to do clinical exams and go into the communities to examine women. Spirituality is very strong among the people and emotional support during disease is stressed.

Brazil: There is not much research into the disease in this country but they are concentrating on early detection (although they call it prevention). “Agents of Prevention” a.k.a. local women are trained to teach BSE and to explain to women that they have the right to visit a health clinic. Men control women’s access and husbands can/do prevent the women from going to medical doctors, usually out of jealousy and misplaced machismo. Various cartoon stories were created to help educate women.

Croatia: 750 women die there each year from the disease. Higher incidence rates are projected, especially among younger women. Since they are a recent war zone, there is not much money for women’s health. This country does have long-standing cancer groups; the one in the capitol city of Zagreb just celebrated its twentieth anniversary. This event was the basis for a nation-wide meeting for cancer support groups. They have also joined Europa Donna, an international organization for women. They have no compulsory screening programs but have recently produced shower cards for widespread distribution. Various women in government are supporting their efforts and the groups are working closely with them to find ways to get awareness increased.

Latvia: Statistics show that survival for Stage I to be about 89-92%, while stage III is at 45% for five years. Overall it is 60% at five years (that would be a ten year figure in the U.S.) BSE has been taught for the last twenty years and both lumpectomy and mastectomy are offered to patients. Herceptin and Taxol are available. Unfortunately, there are many late stage diagnoses. They have managed to screen 10,000 women in recent years, ages 45-65 but this is only a small percentage of the 300,000 eligible women. 7% of those diagnosed are under age 30.

Myanmar: (formerly Burma) about 2000 doctors practice Western medicine here. They are willing to work with Ayer-Vedic and Traditional Chinese medicine doctors. Cervical cancer is the number one malignancy, now closely followed by breast cancer. The diet is low fat, low in animal products; the women are thin and mostly malnourished. Like African women, they do not fit into Western established risk factors. Late diagnosis is common here too. They do have patient support groups and teach BSE techniques. 45% of all breast cancer is among pre-menopausal women, 23% under age 40 and 5% under age 30.

India: There are social taboos, financial problems, expensive and long treatment with side effects and frequent travel to a cancer hospital that cause women to avoid disclosing their condition to family or others. Most are diagnosed at late stages. Very little has been done to increase awareness, although there are now some survivor groups. CHETNA is woman-oriented organization that is helping in this area. There is a shortage of prostheses in India and donations are welcome. (NOTE: Contact this site for more information). Breast cancer screening may be made compulsory for older women but more locations for clinical examinations are needed now. A recent study concluded that partial mastectomy (lumpectomy) is a viable treatment in that country, even for later stage diagnosis. Two different doctors told me that women are not valued in their country and their husbands can decide not to pay for treatment. Some men believe that they will be better off with a new wife.

Romania: High incidence and mortality rates plague this country. Their main objectives are to increase awareness, educate health care providers and impact on earlier diagnoses and more consistent treatment. The Romanian Breast Cancer Centre was created using the knowledge base learned at the 1997 World Conference on Breast Cancer.

Lithuania: Male breast cancer was examined and found to be rare. However, most presented at late stages with poor survival. Invasive lobular was the most common type found in this study.

Yugoslavia: Breast cancer is the leading malignancy in Serbia. The incidence is now 54 per 100,000. 35% of women diagnosed have early stage disease; 14% have metastatic disease. They are attempting to screen high risk women as identified through surveys. These women are taught BSE and asked to participate in mammography screening program as well as having clinical examinations. There are lectures now being given at medical centers and other institutions to help reach women. There was no discussion about patient-run or centered programs.

Uganda: Studies show that breast cancer is affecting younger women than in the West.

Australia: Although there is a strong advocate presence in this country, materials that are culturally sensitive to the indigenous population have not been fully developed. This special population is therefore diagnosed later and there are issues of access and equity now being addressed.

Russia: Moscow-from a prospective study, conclusions were drawn that indicated a special system to motivate women to enter screening programs is needed. Women lack confidence in screening programs so does not participate fully. In another study, 14% of the women were under age 40, many had thyroid pathology.

Georgia: (Former Soviet Republic) Male breast cancer was studied here and it is rare. The results of a retrospective analysis indicate that surgery alone is a reasonable treatment for men. The prognosis can be related to tumor grade and lymph node status.

Slovak Republic: A very small study of patients with Clodronate was discussed. The results found no benefit for this treatment of bone metastasis. (NOTE: Other studies have shown good results).

Philippines: In 1997, the Philippines Breast Cancer Network was established. They received very little help or recognition from health care professionals but managed to create a national conference last October. The second annual conference will be held this year. This group recommends an organic diet as well as both conventional and alternative therapies. A primary goal is to link with other national movements around the world. Separately, a cancer center established an expressive arts workshop to help patients find a therapeutic “avenue for expressing issues deeply affecting cancer patients”.

Ukraine: A rehabilitation center has been established that offers physical and emotional support and hospice care.

Kenya: There is a continuing education program for breast cancer awareness and BSE “with a view to breaking through cultural barriers in the current socio-economic environment. Educating rural women remains a high priority. There is a great need for more mobile clinics offering treatment and education, with systematic, scheduled visits to rural areas. Breast cancer is the leading cause of death among women age 35-50. Most women have very late stage diagnosis. Some Africans are treating breast cancer with cobra snake venom since it contains a chemical that helps stop the spread of a tumor. (NOTE: This is being examined in the U.S. as well). Half the population gets one meal a day.

Puerto Rico: This is the major cause of death for women over age 50. Most breast cancer is detected at a late stage. Several groups have undertaken education programs for early detection and to raise awareness. 95.7% of the women surveyed want information in Spanish. Most women have an education level of less than high school graduation (51.7%). They prefer large size type, simple sentences with no graphs or photos or diagrams. They do want to know about local organizations they can contact. A brochure was developed in response to this and is now available to community groups and physicians.

Switzerland: A physician made a presentation discussing how she has prepared for very educated patient advocates when they contact her. To date, she said there is no organized patient advocacy movement in her country. Another presentation was made on the use of Naturopathy as a (n adjunct) therapy for cancer treatment. This includes herbs and homeopathy among other methods.

Pakistan: There was some discussion of the value of organic foods for dealing with disease. The incidence of breast cancer is rising here as everywhere worldwide. The vast majority of women are malnourished and men control their treatment decisions. There are no female doctors in the country at all, only one mammography machine, one blood culture lab and one radiation therapy machine. The women are frequently married at very young ages. There is much intermarriage among castes and villages. It was also said that people with disabilities were often forced to marry others with disabilities. There is a strong need for a cancer hospital with breast service in each province.

Cameroon: There is a lack of information; the disease is ignored for most. Two years ago delegates received material at a conference and have used this to educate community leaders. These people now go into various rural localities to help train others. There are 2 oncologists in the country. Two private practice physicians offer mammography, it is very expensive and there is a long wait. 90% of those diagnosed are at late stage-survival is about two years.

Ghana: 85% of women are diagnosed at Stage III or IV. Western medicine is very expensive and there is no insurance. There is one radiologist in the country. It has been suggested that the reproductive health centers are good locations to teach BSE and to offer clinical breast exams. The Breast Cancer Support Group is lobbying parliament and other policy makers to create legislation to address and fight breast cancer. They have instituted an awareness and education program nationwide. There are now district and community support groups at a local level. After they demonstrate the value of this activity, more such groups will be established.

Argentina: A breast cancer support group for patients has been formed recently. During 1998, the group concentrated on psychodrama techniques to deal with their disease. Society is prejudiced against cancer and its connotations.

Estonia: There are 37 cases per 100,000 women here. About half are at late stage when diagnosed.

Mongolia: Incidence and mortality continue to rise here. There is an effort underway to teach BSE techniques.

Bangladesh: A cloud of misfortune is cast over any family (extended family structures are common here), which has a member with breast cancer. It is believed that the disease is contagious. The cost of treatment is beyond the reach of most people. There is no free and accessible method of early diagnosis known. Education is needed.

Israel: A program to promote early detection is underway with peer education in the workplace a primary factor. As of 1996, only 20-25% of women over age 50 had had a mammogram. This is expected to increase due to the changes in national health policy. A large number of younger women are diagnosed with breast cancer. Many general physicians and gynecologists do not routinely perform clinical breast examinations. There is no program aimed at younger women. Community breast health promoters are being trained to instruct women about all aspects of their breast health.

Canada: Lots of women complained that their province did not have enough access to information or treatment. Speakers mentioned the problems of rural women, of Black-Canadian women (in Nova Scotia particularly), and of other ethnic groups. First Nations women spoke about the efforts they are making to bring culturally sensitive material to their people. They all agreed that the health system of Canada was good, even if access was limited in areas.

Moldovia: Since 1990 breast cancer morbidity has increased at a rate of 25% up to 1995. It was stable prior to that (compared with 1986-90). Incidence of breast cancer has risen threefold for women age 25-34 (4.9% to 12.3%) and age 35-39 is doubled from 28% to 52.6%). The map of this region with the highest rate correlates with that of the highest radioisotope pollution in the first ten days after the Chernobyl accident. “Specific gravity of concomitant pathology of the thyroid gland increased in young breast cancer patients”. This too corresponds to the isotope pollution. Breast cancer deaths are the number one cause among all cancer deaths at 19.3%. There is no medical insurance currently. The standard of living is the lowest in Europe(mean salary per month is equivalent to $23 USD). There is no organized screening program but they are trying to organize a center where women can come for early diagnosis.

Written by Ann Fonfa, President, The Annie Appleseed Project

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